Lupus FAQ

Question:

I think I do most of my sleeping on weekends. I need longer days. I’m too slow to get everything done that needs it. The basics seem to take too long so I just keep getting "behinder!" LOL Bev. "Grace Casselman" <gr…@casselman.net> wrote in message

news:3E6525EF.A3134D2B@casselman.net… – Hide quoted text — Show quoted text -> I know that a /good night’s sleep/ is important for everyone. But I find > it makes a HUGE difference in how I feel the next day. If I don’t get > some decent sleep, I’ll not only be tired, but I tend to be really achy > in my muscles and joints. > I haven’t slept through the entire night solidly since before my > diagnosis. But things have improved over the last several months, so I > usually get four or five hours of solid sleep, and then some more > intermittent sleep… > I don’t take any specific sleeping drugs, but I have on occasion taken > Tylenol or Ibuprofin before bed, if I have a thought I might need extra > help… > How are others out there doing with their sleep? Do you too find it’s SO > SO important to sleep well, to feel passably the next day? > Grace.

Response:

I have Soma also and it does help when I am just in too much pain. The asceptic meneingitis was so painful they gave me soma and I get charlie horses as well as muscle spasms. I have never had any dependency problems with my meds. Maybe a little tolerance build up but I only take them when I really need them I never hardly took tylenol before Lupus I just don’t like to take pills and I get indegestion so easy from all of them. So anyway it (soma) does help and I am not groggy in the morning like real sleep meds can do to you. Cindy W. – Hide quoted text — Show quoted text -J wrote: > Grace Casselman wrote: > > > ll.  I find that Soma helps me get better sleep, but it’s still > > > not enough, and with the pain and pred I think I don’t sleep as well as > > > I should. > > Sharon: > > What is Soma? Do you think it’s at all addictive? > > I’ve been warned that if I take anything to sleep, soon I’ll NEED that, to be > > able to sleep. And I’m hesitant to take yet another drug… > It’s a muscle relaxant Grace, > The euphoria side effect sounds great > It’s metabolized in the liver and excreted by the kidney. > I forget some of the notables on it, (not for people with porphyria is one) > but if you click on each tab (at the top) here, you can read all the details > about it. > http://www.rxlist.com/cgi/generic/carisop_wcp.htm > Hugs > J

Response:

"Grace Casselman" <gr…@casselman.net> wrote in message

news:3E6525EF.A3134D2B@casselman.net… – Hide quoted text — Show quoted text -> I know that a /good night’s sleep/ is important for everyone. But I find > it makes a HUGE difference in how I feel the next day. If I don’t get > some decent sleep, I’ll not only be tired, but I tend to be really achy > in my muscles and joints. > I haven’t slept through the entire night solidly since before my > diagnosis. But things have improved over the last several months, so I > usually get four or five hours of solid sleep, and then some more > intermittent sleep… > I don’t take any specific sleeping drugs, but I have on occasion taken > Tylenol or Ibuprofin before bed, if I have a thought I might need extra > help… > How are others out there doing with their sleep? Do you too find it’s SO > SO important to sleep well, to feel passably the next day?

Yes, but I think it’s also important not to over-sleep.  I feel awful when I sleep too much, and just drag all day.

Response:

Thank heaven for naps! "Ward" <jcwar…@earthlink.net> wrote in message

news:3E652E30.2A3760FD@earthlink.net… – Hide quoted text — Show quoted text -> Your right Grace is just not always easy. Fortunately I have finally taught > myself if I can and I feel the need I nap. That was a hard one to learn. > I have also been on so many steroids the last 3 years that sleep , real > sleep that is a difficult thing. > Anyway now I am down to 30 mls pred no extras and sleep bout 4 hours a > night an improvement cause is all at once. Then some naps during the week. > (0: > Cindy W. > Grace Casselman wrote: > > I know that a /good night’s sleep/ is important for everyone. But I find > > it makes a HUGE difference in how I feel the next day. If I don’t get > > some decent sleep, I’ll not only be tired, but I tend to be really achy > > in my muscles and joints. > > I haven’t slept through the entire night solidly since before my > > diagnosis. But things have improved over the last several months, so I > > usually get four or five hours of solid sleep, and then some more > > intermittent sleep… > > I don’t take any specific sleeping drugs, but I have on occasion taken > > Tylenol or Ibuprofin before bed, if I have a thought I might need extra > > help… > > How are others out there doing with their sleep? Do you too find it’s SO > > SO important to sleep well, to feel passably the next day? > > Grace.

Response:

Grace Casselman wrote: >>ll.  I find that Soma helps me get better sleep, but it’s still >>not enough, and with the pain and pred I think I don’t sleep as well as >>I should. > Sharon: > What is Soma? Do you think it’s at all addictive? > I’ve been warned that if I take anything to sleep, soon I’ll NEED that, to be > able to sleep. And I’m hesitant to take yet another drug… > Grace.

Soma (aka Carisoprotol) is a muscle relaxer, similar to Flexeril, but I find Soma works a bit better than Flexeril for me.  I do think you can build a tolerance to Soma, but I know those who do take a week’s break from Soma and take Flexeril for that week to lower their tolerance again.  That’s what I’m gonna do if I find it stops working.  Not sure if it does break the tolerance, but I also know people who haven’t built up a tolerance after years of being on it, and there are those who said they needed to move on to Zanaflex, which is even stronger than Soma. Guess it depends on the individual. Will let you know if I find myself having any troubles with it, or if I can’t seem to sleep without it after being on it for a while.  Maybe you can ask your doc about it.  I remember some people mentioning that their docs don’t like to use it, and some docs don’t mind using it at all.  My GP uses it himself when he needs a muscle relaxer, so he didn’t mind giving my hubby some for his RLS, and that’s how I found out about it. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Joy~ If the sight of the blue skies fills you with joy, if the simple things of nature have a messsage that you understand, rejoice, because your soul is alive.                                       -Eleonora Duse

Response:

- Hide quoted text — Show quoted text -Grace Casselman wrote: > I know that a /good night’s sleep/ is important for everyone. But I find > it makes a HUGE difference in how I feel the next day. If I don’t get > some decent sleep, I’ll not only be tired, but I tend to be really achy > in my muscles and joints. > I haven’t slept through the entire night solidly since before my > diagnosis. But things have improved over the last several months, so I > usually get four or five hours of solid sleep, and then some more > intermittent sleep… > I don’t take any specific sleeping drugs, but I have on occasion taken > Tylenol or Ibuprofin before bed, if I have a thought I might need extra > help… > How are others out there doing with their sleep? Do you too find it’s SO > SO important to sleep well, to feel passably the next day? > Grace.

I find a good night’s sleep is IMPERATIVE for feeling human the next day.  The aches and pains are definitely so much worse when I don’t sleep well.  I find that Soma helps me get better sleep, but it’s still not enough, and with the pain and pred I think I don’t sleep as well as I should. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Joy~ If the sight of the blue skies fills you with joy, if the simple things of nature have a messsage that you understand, rejoice, because your soul is alive.                                       -Eleonora Duse

Response:

Grace Casselman wrote: > > ll.  I find that Soma helps me get better sleep, but it’s still > > not enough, and with the pain and pred I think I don’t sleep as well as > > I should. > Sharon: > What is Soma? Do you think it’s at all addictive? > I’ve been warned that if I take anything to sleep, soon I’ll NEED that, to be > able to sleep. And I’m hesitant to take yet another drug…

It’s a muscle relaxant Grace, The euphoria side effect sounds great It’s metabolized in the liver and excreted by the kidney. I forget some of the notables on it, (not for people with porphyria is one) but if you click on each tab (at the top) here, you can read all the details about it. http://www.rxlist.com/cgi/generic/carisop_wcp.htm Hugs J

Response:

> ll.  I find that Soma helps me get better sleep, but it’s still > not enough, and with the pain and pred I think I don’t sleep as well as > I should.

Sharon: What is Soma? Do you think it’s at all addictive? I’ve been warned that if I take anything to sleep, soon I’ll NEED that, to be able to sleep. And I’m hesitant to take yet another drug… Grace.

Response:

Geez What I wouldn’t give for 12 solid hours of sleep… I watch my remaining 2 cat sleep all day and they look so D*** comfortable… LOL That is something I do miss bout my old fella he would follow me around till I sat down and cuddled him not sure if he did it more for him or me at times (0: Anyway the other part is I grew up on a little farm in upstate NY and my mom and grama were like drill sergeants daytime sleeping was unheard of for females. So it was hard to break that train of thought. I am just glad to have the advantage to do it if I need to. Cindy W. – Hide quoted text — Show quoted text -Shelagh wrote: > Absolutely yes, nighttime sleep is a huge factor for quality during the > day! I must have my 10 – 12 hours each night! I sleep sound as a board > and don’t take any pills to sleep with. > I don’t need any pills LOL! As soon as my head hits the pillow my eyes > get so heavy that even reading a chapter in my book (which is also a > must at night… just something I have always done is all) is almost > impossible some nights. When the lamp goes out so do I, like a switch > has been hit. I have always slept alot and well… My mother said since > I was born I needed minimum of 12 hours a night and took a 2 hour nap in > the afternoons until schoolage- grade 1 -and apparently fell asleep in > class through grade 1, after lunch quite often <g>! > Just a kid at heart when it comes to my sleep, although I don’t nap in > the daytime at all. > I will lie down with my book but never sleep in the day unless I am in a > major flare; even then I sleep my 12 hour night too! > And if I do get kept up at night?! (eg: when kids were growing up etc.) > It is guaranteed that I will have an impossibly hellish following day! > — > Hugs from Shelagh > http://continue.to/lupus > "Grace Casselman" <gr…@casselman.net> wrote in message > news:3E6525EF.A3134D2B@casselman.net… > > I know that a /good night’s sleep/ is important for everyone. But I > find > > it makes a HUGE difference in how I feel the next day. If I don’t get > > some decent sleep, I’ll not only be tired, but I tend to be really > achy > > in my muscles and joints. > > I haven’t slept through the entire night solidly since before my > > diagnosis. But things have improved over the last several months, so I > > usually get four or five hours of solid sleep, and then some more > > intermittent sleep… > > I don’t take any specific sleeping drugs, but I have on occasion taken > > Tylenol or Ibuprofin before bed, if I have a thought I might need > extra > > help… > > How are others out there doing with their sleep? Do you too find it’s > SO > > SO important to sleep well, to feel passably the next day? > > Grace.

Response:

Ward wrote:

Fortunately I have finally taught > myself if I can and I feel the need I nap.

Hi Cindy: Yeah, it’s not a "moral loss" if I go for a nap during the day; I’m not "giving in to my illness." I don’t know why I fight feeling like a bit of a failure (or at least an all-out "sickie") if I sleep during the day. Hmm… Lately, I’ve been so busy, it’s more rare for me to take daytime rest time, and I’m doing okay, which is good. When I’m doing better, it may make sense for me just to save sleeping for night, to try and get some solid sleep time. But other times, I just need periodic rest — and so I need it! Grace.

Response:

Your right Grace is just not always easy. Fortunately I have finally taught myself if I can and I feel the need I nap. That was a hard one to learn. I have also been on so many steroids the last 3 years that sleep , real sleep that is a difficult thing. Anyway now I am down to 30 mls pred no extras and sleep bout 4 hours a night an improvement cause is all at once. Then some naps during the week. (0: Cindy W. – Hide quoted text — Show quoted text -Grace Casselman wrote: > I know that a /good night’s sleep/ is important for everyone. But I find > it makes a HUGE difference in how I feel the next day. If I don’t get > some decent sleep, I’ll not only be tired, but I tend to be really achy > in my muscles and joints. > I haven’t slept through the entire night solidly since before my > diagnosis. But things have improved over the last several months, so I > usually get four or five hours of solid sleep, and then some more > intermittent sleep… > I don’t take any specific sleeping drugs, but I have on occasion taken > Tylenol or Ibuprofin before bed, if I have a thought I might need extra > help… > How are others out there doing with their sleep? Do you too find it’s SO > SO important to sleep well, to feel passably the next day? > Grace.

Response:

Absolutely yes, nighttime sleep is a huge factor for quality during the day! I must have my 10 – 12 hours each night! I sleep sound as a board and don’t take any pills to sleep with. I don’t need any pills LOL! As soon as my head hits the pillow my eyes get so heavy that even reading a chapter in my book (which is also a must at night… just something I have always done is all) is almost impossible some nights. When the lamp goes out so do I, like a switch has been hit. I have always slept alot and well… My mother said since I was born I needed minimum of 12 hours a night and took a 2 hour nap in the afternoons until schoolage- grade 1 -and apparently fell asleep in class through grade 1, after lunch quite often <g>! Just a kid at heart when it comes to my sleep, although I don’t nap in the daytime at all. I will lie down with my book but never sleep in the day unless I am in a major flare; even then I sleep my 12 hour night too! And if I do get kept up at night?! (eg: when kids were growing up etc.) It is guaranteed that I will have an impossibly hellish following day! — Hugs from Shelagh http://continue.to/lupus "Grace Casselman" <gr…@casselman.net> wrote in message

news:3E6525EF.A3134D2B@casselman.net… – Hide quoted text — Show quoted text -> I know that a /good night’s sleep/ is important for everyone. But I find > it makes a HUGE difference in how I feel the next day. If I don’t get > some decent sleep, I’ll not only be tired, but I tend to be really achy > in my muscles and joints. > I haven’t slept through the entire night solidly since before my > diagnosis. But things have improved over the last several months, so I > usually get four or five hours of solid sleep, and then some more > intermittent sleep… > I don’t take any specific sleeping drugs, but I have on occasion taken > Tylenol or Ibuprofin before bed, if I have a thought I might need extra > help… > How are others out there doing with their sleep? Do you too find it’s SO > SO important to sleep well, to feel passably the next day? > Grace.

Response:

I know that a /good night’s sleep/ is important for everyone. But I find it makes a HUGE difference in how I feel the next day. If I don’t get some decent sleep, I’ll not only be tired, but I tend to be really achy in my muscles and joints. I haven’t slept through the entire night solidly since before my diagnosis. But things have improved over the last several months, so I usually get four or five hours of solid sleep, and then some more intermittent sleep… I don’t take any specific sleeping drugs, but I have on occasion taken Tylenol or Ibuprofin before bed, if I have a thought I might need extra help… How are others out there doing with their sleep? Do you too find it’s SO SO important to sleep well, to feel passably the next day? Grace.

Response:

Question:

Maybe she could try some roller skating padding? Knee pads, elbow pads, etc. Bev "Janers" <rojak…@bright.net> wrote in message

news:ZSiY9.7111$37.811432@cletus.bright.net… – Hide quoted text — Show quoted text -> Lyndal. > I told you to wrap in bubble wrap and then have hubby pop a bubble once in > awhile.  What you doing falling like that?  I am happy the doctor, even > though you hated it, I think he did the right thing by admitting you. > Better safe than sorry,and with your track record this past week, you > needed to be. > Now heparin injections?  man oh man, talk about tough luck lady.  I am so > so sorry you had to go through all that and then end up with heparin post > discharge…crap > Elevate that knee and ice too.  Good job doc..I mean, not the fall, the > care of the knee..LOL > YOu stay put now.  And honest to Mighty, get some bubble wrap just in > case…please LOL > take care and good luck > huggie > janers

Response:

Lyndal Parker-Newlyn and Phill Newlyn wrote: <snip> > well,there’s the update gang… > From the hopping and bruised one > Lyndal

((((((Lyndal)))) Feel better, and don’t take off that bubble wrap until you have a healed knee, ok?  Feel better! -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost.                                 -M.H. McKee

Response:

Not to make light of your problems, but I fell on my right knee too (the one with the TKR) and have a matching big purple lump. It was interesting in Aquasize that it actually went down and felt better. Sure hope you get straightened out soon, and that the fires are dying down – all that smoke isn’t good. "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in message news:DQhY9.32370$jM5.82573@newsfeeds.bigpond.com… – Hide quoted text — Show quoted text -> Well my INR on Thursday was 18!!!  I had an appointment to see Roman the > rheumy God in Wollongong so went up and…he wouldn’t let me go home.  He > admitted me to hospital up there for Vitamin K to bring it down.  I probably > could have got away with it but I fell and landed heavily on my right > knee…in his office!!   After that he wasn’t letting me go anywhere.  So > Phill went to Kmart and bought me PJs and toothbrush etc (Wollongong is > about 80kms from home)  Roman admitted me and I had re-check that it wasn’t > a false result, then 1mg of IV Vitamin K.  hat worked too well, so Friday > morning my INR was 2!!!  So I’m home now, but would you believe on heparin > injections until the Vit K wears off!!!  I saw Raj the haematologist and > peter the gastroenterologist and they think I may have some kind of gut > malabsorption that’s mucking up my warfarin….so more tubes in orifices to > come. > The only prob now is my knee…as my INR was 18 when I fell I have had a big > internal bleed into the joint and it is just incredibly painful. I’m really > surprised by how much it hurts..and it is FAT..so ice and rest (and I am > just so good at rest  ha ha ha ) > As for the rest of the illness it was interesting to hear Roman ring the > haematologist and explain "…she’s pretty complicated, has antiphospholipid > syndrome, had two CVA’s last year and some seizures…yeah..yeah…we’re > pretty sure she has an overlap syndrome too..yeah…lupus I think…yeah… > yeah.."  I guess that’s as close as I’m going to get to a diagnosis? > I was pleased though he’d ta;ked about swapping to methotrexate, but he > wants to stick with Imuran a bit longer first.  Once my bloods are stable we > are going to try and increase Imuran to 150. > well,there’s the update gang… > From the hopping and bruised one > Lyndal

Response:

Doctors make such good patients and follow orders so well!  Guess you should have wrapped up in the bubble wrap! Glad you were someplace that got you immediate help when you took your fall. But sure sorry that you are going through all of this. Stay down, rest, and be a good girl! Hugs, Sherry "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in message news:DQhY9.32370$jM5.82573@newsfeeds.bigpond.com… – Hide quoted text — Show quoted text -> Well my INR on Thursday was 18!!!  I had an appointment to see Roman the > rheumy God in Wollongong so went up and…he wouldn’t let me go home.  He > admitted me to hospital up there for Vitamin K to bring it down.  I probably > could have got away with it but I fell and landed heavily on my right > knee…in his office!!   After that he wasn’t letting me go anywhere.  So > Phill went to Kmart and bought me PJs and toothbrush etc (Wollongong is > about 80kms from home)  Roman admitted me and I had re-check that it wasn’t > a false result, then 1mg of IV Vitamin K.  hat worked too well, so Friday > morning my INR was 2!!!  So I’m home now, but would you believe on heparin > injections until the Vit K wears off!!!  I saw Raj the haematologist and > peter the gastroenterologist and they think I may have some kind of gut > malabsorption that’s mucking up my warfarin….so more tubes in orifices to > come. > The only prob now is my knee…as my INR was 18 when I fell I have had a big > internal bleed into the joint and it is just incredibly painful. I’m really > surprised by how much it hurts..and it is FAT..so ice and rest (and I am > just so good at rest  ha ha ha ) > As for the rest of the illness it was interesting to hear Roman ring the > haematologist and explain "…she’s pretty complicated, has antiphospholipid > syndrome, had two CVA’s last year and some seizures…yeah..yeah…we’re > pretty sure she has an overlap syndrome too..yeah…lupus I think…yeah… > yeah.."  I guess that’s as close as I’m going to get to a diagnosis? > I was pleased though he’d ta;ked about swapping to methotrexate, but he > wants to stick with Imuran a bit longer first.  Once my bloods are stable we > are going to try and increase Imuran to 150. > well,there’s the update gang… > From the hopping and bruised one > Lyndal

Response:

Poor Lyndal! Broken toe, broken knee. You really do need the bubble wrap. It’s great that you only had to stay one night in the hospital, but you really need to take care of yourself now. Please, please try. Suzie "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in message news:DQhY9.32370$jM5.82573@newsfeeds.bigpond.com… – Hide quoted text — Show quoted text -> Well my INR on Thursday was 18!!!  I had an appointment to see Roman the > rheumy God in Wollongong so went up and…he wouldn’t let me go home.  He > admitted me to hospital up there for Vitamin K to bring it down.  I probably > could have got away with it but I fell and landed heavily on my right > knee…in his office!!   After that he wasn’t letting me go anywhere.  So > Phill went to Kmart and bought me PJs and toothbrush etc (Wollongong is > about 80kms from home)  Roman admitted me and I had re-check that it wasn’t > a false result, then 1mg of IV Vitamin K.  hat worked too well, so Friday > morning my INR was 2!!!  So I’m home now, but would you believe on heparin > injections until the Vit K wears off!!!  I saw Raj the haematologist and > peter the gastroenterologist and they think I may have some kind of gut > malabsorption that’s mucking up my warfarin….so more tubes in orifices to > come. > The only prob now is my knee…as my INR was 18 when I fell I have had a big > internal bleed into the joint and it is just incredibly painful. I’m really > surprised by how much it hurts..and it is FAT..so ice and rest (and I am > just so good at rest  ha ha ha ) > As for the rest of the illness it was interesting to hear Roman ring the > haematologist and explain "…she’s pretty complicated, has antiphospholipid > syndrome, had two CVA’s last year and some seizures…yeah..yeah…we’re > pretty sure she has an overlap syndrome too..yeah…lupus I think…yeah… > yeah.."  I guess that’s as close as I’m going to get to a diagnosis? > I was pleased though he’d ta;ked about swapping to methotrexate, but he > wants to stick with Imuran a bit longer first.  Once my bloods are stable we > are going to try and increase Imuran to 150. > well,there’s the update gang… > From the hopping and bruised one > Lyndal

Response:

Hi Lyndal, I can see that my concern about your absence was well founded. What a mess, and a worry for all of you. You know what you have to do now. Follow the instructions you would give one of your patients who was in your condition. Take care. Be well. BJ-in ruddy cold Sk. Canada "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in message news:DQhY9.32370$jM5.82573@newsfeeds.bigpond.com… – Hide quoted text — Show quoted text -> Well my INR on Thursday was 18!!!  I had an appointment to see Roman the > rheumy God in Wollongong so went up and…he wouldn’t let me go home.  He > admitted me to hospital up there for Vitamin K to bring it down.  I probably > could have got away with it but I fell and landed heavily on my right > knee…in his office!!   After that he wasn’t letting me go anywhere.  So > Phill went to Kmart and bought me PJs and toothbrush etc (Wollongong is > about 80kms from home)  Roman admitted me and I had re-check that it wasn’t > a false result, then 1mg of IV Vitamin K.  hat worked too well, so Friday > morning my INR was 2!!!  So I’m home now, but would you believe on heparin > injections until the Vit K wears off!!!  I saw Raj the haematologist and > peter the gastroenterologist and they think I may have some kind of gut > malabsorption that’s mucking up my warfarin….so more tubes in orifices to > come. > The only prob now is my knee…as my INR was 18 when I fell I have had a big > internal bleed into the joint and it is just incredibly painful. I’m really > surprised by how much it hurts..and it is FAT..so ice and rest (and I am > just so good at rest  ha ha ha ) > As for the rest of the illness it was interesting to hear Roman ring the > haematologist and explain "…she’s pretty complicated, has antiphospholipid > syndrome, had two CVA’s last year and some seizures…yeah..yeah…we’re > pretty sure she has an overlap syndrome too..yeah…lupus I think…yeah… > yeah.."  I guess that’s as close as I’m going to get to a diagnosis? > I was pleased though he’d ta;ked about swapping to methotrexate, but he > wants to stick with Imuran a bit longer first.  Once my bloods are stable we > are going to try and increase Imuran to 150. > well,there’s the update gang… > From the hopping and bruised one > Lyndal

Response:

Lyndal. I told you to wrap in bubble wrap and then have hubby pop a bubble once in awhile.  What you doing falling like that?  I am happy the doctor, even though you hated it, I think he did the right thing by admitting you. Better safe than sorry,and with your track record this past week, you needed to be. Now heparin injections?  man oh man, talk about tough luck lady.  I am so so sorry you had to go through all that and then end up with heparin post discharge…crap Elevate that knee and ice too.  Good job doc..I mean, not the fall, the care of the knee..LOL YOu stay put now.  And honest to Mighty, get some bubble wrap just in case…please LOL take care and good luck huggie janers

Response:

Well my INR on Thursday was 18!!!  I had an appointment to see Roman the rheumy God in Wollongong so went up and…he wouldn’t let me go home.  He admitted me to hospital up there for Vitamin K to bring it down.  I probably could have got away with it but I fell and landed heavily on my right knee…in his office!!   After that he wasn’t letting me go anywhere.  So Phill went to Kmart and bought me PJs and toothbrush etc (Wollongong is about 80kms from home)  Roman admitted me and I had re-check that it wasn’t a false result, then 1mg of IV Vitamin K.  hat worked too well, so Friday morning my INR was 2!!!  So I’m home now, but would you believe on heparin injections until the Vit K wears off!!!  I saw Raj the haematologist and peter the gastroenterologist and they think I may have some kind of gut malabsorption that’s mucking up my warfarin….so more tubes in orifices to come. The only prob now is my knee…as my INR was 18 when I fell I have had a big internal bleed into the joint and it is just incredibly painful. I’m really surprised by how much it hurts..and it is FAT..so ice and rest (and I am just so good at rest  ha ha ha ) As for the rest of the illness it was interesting to hear Roman ring the haematologist and explain "…she’s pretty complicated, has antiphospholipid syndrome, had two CVA’s last year and some seizures…yeah..yeah…we’re pretty sure she has an overlap syndrome too..yeah…lupus I think…yeah… yeah.."  I guess that’s as close as I’m going to get to a diagnosis? I was pleased though he’d ta;ked about swapping to methotrexate, but he wants to stick with Imuran a bit longer first.  Once my bloods are stable we are going to try and increase Imuran to 150. well,there’s the update gang… From the hopping and bruised one Lyndal

Response:

Question:

Yes, I have some on my arm and legs. I didn’t know what they were until one broke out at the dermo dr. visit. but I have no brusing. "KCat" <kcdoc…@ghg.net> wrote in message

news:dtgv8ucu6da17gieelov6nrgocd173q3fb@4ax.com… – Hide quoted text — Show quoted text -> On Wed, 13 Mar 2002 13:07:48 -0600, "BJ" <B…@sk.nojunk.ca>  wrote: > >Hi Everyone, > >Have any of you had blood vessels in your fingers that self destuct? > yup. > >I have > >had episodes of this for a number of years. It has happened a lot again > >lately. I feel a ping, my area gets hot, and a bruise appears on my finger. > yup yup yup > >Sometimes the end of that finger will get numb. > nope. > >One can see the bruising > >spead gradually and then it just stops. > yup. > >You are all so smart. > *ss. > >I am sure > >someone will know why that would happen. > nope. > but I’m assuming it’s weakend (uh…weakened) vessels due to > inflammatory effects. I can usually tell that something has actually > caused it but it takes very little – slightly torquing my finger while > writing or brushing my hair or whatever.  nice little pop, then sting, > then blue. > >BJ-with three blue fingers > trying to think of something humorous in response to that but failing. > perhaps because I’m 45 mins over my allotted time again! > toodles. > kcat

—–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

Hi Cindy, I turn blue on my neck too! I didn’t think that happened to anyone else. It is at the base of my neck. It gets deep purple down to my collar bone. It is darkest on the left side. It occurs mostly when I am in a flare. I have always thought that it has to do with poor oxygen transport. Who knows. It is weird. That’s all I can say. We must be twins. BJ-SK. Canada "wards" <jcwar…@earthlink.net> wrote in message

news:3C93DF35.632AB2FC@earthlink.net… – Hide quoted text — Show quoted text -> Hi BJ I have this alot  always a blue finger or two. Same as you describe I > have 2 right now. > Also  back a little over a year ago maybe longer I had an odd thing. The > back of my neck turned would turn bright blue. the back of it and down my > left shoulder. My daughter called me a Smurf lol. > No one could come up with a reason od explanation. It would feel same as my > fingers but would just completely disappear. > Have always wondered bout that on > Cindy Smurf (0: > BJ wrote: > > Hi Candi, > > I think of it happening in my brain too. I said that to a doctor once. He > > made no comment. He just shrugged. It made me think that it was a > > possibility. > > BJ-hoping it is just fingers > > "Candi Bowen" <reen…@earthlink.net> wrote in message > > news:zfIk8.23885$Vx1.2047133@newsread1.prod.itd.earthlink.net… > > > Me too! It’s the weirdest thing; you explained it perfectly tho. I just > > pray > > > it doesn’t happen in my brain. > > > Two years ago it happened in my foot & caused vascular cellulitis; my > > whole > > > foot was red, swollen & hot. Two red streaks were snaking up my ankle & > > they > > > were talking about amputation !!! I couldn’t walk for weeks, it was SOO > > > painful. Massive pred took care of it, thank God. > > > Candi

Response:

Hi BJ I have this alot  always a blue finger or two. Same as you describe I have 2 right now. Also  back a little over a year ago maybe longer I had an odd thing. The back of my neck turned would turn bright blue. the back of it and down my left shoulder. My daughter called me a Smurf lol. No one could come up with a reason od explanation. It would feel same as my fingers but would just completely disappear. Have always wondered bout that on Cindy Smurf (0: – Hide quoted text — Show quoted text -BJ wrote: > Hi Candi, > I think of it happening in my brain too. I said that to a doctor once. He > made no comment. He just shrugged. It made me think that it was a > possibility. > BJ-hoping it is just fingers > "Candi Bowen" <reen…@earthlink.net> wrote in message > news:zfIk8.23885$Vx1.2047133@newsread1.prod.itd.earthlink.net… > > Me too! It’s the weirdest thing; you explained it perfectly tho. I just > pray > > it doesn’t happen in my brain. > > Two years ago it happened in my foot & caused vascular cellulitis; my > whole > > foot was red, swollen & hot. Two red streaks were snaking up my ankle & > they > > were talking about amputation !!! I couldn’t walk for weeks, it was SOO > > painful. Massive pred took care of it, thank God. > > Candi

Response:

Hi Candi, I think of it happening in my brain too. I said that to a doctor once. He made no comment. He just shrugged. It made me think that it was a possibility. BJ-hoping it is just fingers "Candi Bowen" <reen…@earthlink.net> wrote in message

news:zfIk8.23885$Vx1.2047133@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Me too! It’s the weirdest thing; you explained it perfectly tho. I just pray > it doesn’t happen in my brain. > Two years ago it happened in my foot & caused vascular cellulitis; my whole > foot was red, swollen & hot. Two red streaks were snaking up my ankle & they > were talking about amputation !!! I couldn’t walk for weeks, it was SOO > painful. Massive pred took care of it, thank God. > Candi

Response:

In article <u96tg3j83l5…@corp.supernews.com>, BJ <B…@sk.nojunk.ca> wrote: >Hi Candi, >I think of it happening in my brain too. I said that to a doctor once. He >made no comment. He just shrugged. It made me think that it was a >possibility.

It can.  We’re pretty sure I’ve had at least one cerebral hemmorhage. Problem is, there’s not much way to tell between a hemmorhage and a stroke or TIA unless you have a CT scan done immediately.  Sometimes pooled blood will show up on CT.  Joy oh joy, I seem to have joined the club again.  I have bruises all over my lower legs again, and I haven’t been doing anything to bump them.  I got flaky about taking my vitamin K supplement.  It usually takes about a week to go back to bruising and bleeding everywhere. — Lee M.Thompson-Herbert        l…@retro.com            KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995).  Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"

Response:

Me too! It’s the weirdest thing; you explained it perfectly tho. I just pray it doesn’t happen in my brain. Two years ago it happened in my foot & caused vascular cellulitis; my whole foot was red, swollen & hot. Two red streaks were snaking up my ankle & they were talking about amputation !!! I couldn’t walk for weeks, it was SOO painful. Massive pred took care of it, thank God. Candi

Response:

In article <dtgv8ucu6da17gieelov6nrgocd173q…@4ax.com>, KCat <kcdoc…@ghg.net> wrote [ >trying to think of something humorous in response to that but failing. >perhaps because I'm 45 mins over my allotted time again!

Helping others doesn't count! -- Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

Funny you would bring that up….that is how I was diagnosed…a weird case of an odd number of blue fingers…got a diagnosis of a  Raynauds symptom from my gp and onward to a rheumy for a lupus workup and diagnosis with all the history I had and lab work it was no contest….a classic case of severe sle! (all over blue fingers!) Shelagh at ‘Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus/index.html Lupus Information and Support Contact for Everyone. "BJ" <B…@sk.nojunk.ca> wrote in message

news:u8vau05fogvsec@corp.supernews.com… | Hi Everyone, | Have any of you had blood vessels in your fingers that self destuct? I have | had episodes of this for a number of years. It has happened a lot again | lately. I feel a ping, my area gets hot, and a bruise appears on my finger. | Sometimes the end of that finger will get numb. One can see the bruising | spead gradually and then it just stops. You are all so smart. I am sure | someone will know why that would happen. | BJ-with three blue fingers | |

Response:

On Wed, 13 Mar 2002 13:07:48 -0600, "BJ" <B…@sk.nojunk.ca>  wrote: >Hi Everyone, >Have any of you had blood vessels in your fingers that self destuct?

yup. >I have >had episodes of this for a number of years. It has happened a lot again >lately. I feel a ping, my area gets hot, and a bruise appears on my finger.

yup yup yup >Sometimes the end of that finger will get numb.

nope. >One can see the bruising >spead gradually and then it just stops.

yup. >You are all so smart.

*ss.   >I am sure >someone will know why that would happen.

nope. but I’m assuming it’s weakend (uh…weakened) vessels due to inflammatory effects. I can usually tell that something has actually caused it but it takes very little – slightly torquing my finger while writing or brushing my hair or whatever.  nice little pop, then sting, then blue. >BJ-with three blue fingers

trying to think of something humorous in response to that but failing. perhaps because I’m 45 mins over my allotted time again! toodles. kcat

Response:

> Have any of you had blood vessels in your fingers that self destuct?

Yup. Has happened since high school, usually in my right thumb somewhere. More annoying than painful. I don’t recall the heat, but the purple blood pooling into the break is pretty spectacular. Dunno what causes the ‘explosion.’ Ooo! Three blue fingers? Ow.

Response:

Hi Everyone, Have any of you had blood vessels in your fingers that self destuct? I have had episodes of this for a number of years. It has happened a lot again lately. I feel a ping, my area gets hot, and a bruise appears on my finger. Sometimes the end of that finger will get numb. One can see the bruising spead gradually and then it just stops. You are all so smart. I am sure someone will know why that would happen. BJ-with three blue fingers

Response:

Hi BJ:))) BruceOn. ; hmmm male thought on this , tis so cold there you are like frozen water pipe ? sounds like a cap refill problem , " if you gently pinch a nail on one hand between thumb and index of the other hand then let go , does it stay white longer than 2-3 sec. before refilling to blue , if so this may have something to do with it. " just my idea you can do to tell dr. if it is slow. "BJ" <B…@sk.nojunk.ca> wrote in message

news:u8vau05fogvsec@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Everyone, > Have any of you had blood vessels in your fingers that self destuct? I have > had episodes of this for a number of years. It has happened a lot again > lately. I feel a ping, my area gets hot, and a bruise appears on my finger. > Sometimes the end of that finger will get numb. One can see the bruising > spead gradually and then it just stops. You are all so smart. I am sure > someone will know why that would happen. > BJ-with three blue fingers

Response:

Question:

Nell: You are too funny!! My rheumy said, you have CREST, Lupus and MCTD,UDMCTD, yadda, yadda, and you are very difficult to be with, because you are allergic to everything! I think I may just be allergic to him! Stay warm, Wende

Response:

Hi, Tim!  There’s lots more posts here than some other times, so hang in there.  There’ve been several times a doctor has made a change or suggestion I’m not sure of.  Sometimes I think we’re an experiment for them, but what else can they do?  There’s so little they know about the disease.  They keep trying, at least.  Fortunately I have great old friends who have hung in there despite everything.  I think if your friends have deserted them you being sick, they weren’t really friends.   It’s hard to make new ones when you’re stuck inside being sick, but that’s one nice thing about the internet – don’t have to go out to meet some really nice people! – Hide quoted text — Show quoted text -Tim DuVal wrote: > Hi,  my name is Tim.  I,ve been here for many years and I,ve been unhappy > with the lack of postings.  There are many things here to discuss. I like > you have SD.  It’s not much fun but we don’t have much choice .  If any . > We do have a choice in how we handle it.  Now do you have a child or a > grandchild  that makes your day?   It just might make my day to here it. > Are your old friends all of the sudden not calling you?  Has your Md. > changed something or made a suggestion that you are not sure of ?  I could > go all night but I think that you have the idea.  As for myself I’m quite > guilty of not posting because of all the wonderful people that have passed. > Anne Y. is the only person that I know from the posts.  Now I would like to > share this with all of you.  I was on the phone with my daughter and my 3 > year old grandson wander another hotdog.  I told her to tell him I’d give > him a knuckle sandwich.  He  said ok after he had his hotdog.  Sweet Dreams > All   Tim

Response:

I have twin daughters, turning 27 in June (one loves it, the other is bummed out about getting older!) and 4 grandchildren; 3 from the bummed out one<g>. The "only" (5) was grounded because he went to a lagoon near his house without an adult. I talked to him on the phone about it. "You’re grounded, huh?" He said, "No, I just can’t go anywhere." He sounds like he has the logic of his great-great uncle who said to me "I’ve been member of this family all my life and I don’t like it." I pointed out that I’d been a member of this family all my life, too. I couldn’t top his rejoinder–"But I’ve been a member of it longer!" I was dx’d in 1997 with CREST, SD, and MCTD (or UCTD, never can remember which) with overlaps of lupus. The process of diagnosis had been going on since that summer but the capper was an ulceration (which I thought was frostbite, occuring in December as it did). I was in denial for some time but pretty much more or less accept it now. I’m not wishy-washy, am I?<g> Generationally, my family has bad nerves and depression (the uncle I spoke to has to take medication for his nerves; I take Celexa for depression) so I didn’t need SD for depression; already had it. It’s mostly my late mother’s family (uncle being her brother). Really, except for a famous cousin, not a whole lot in my dad’s family. Meriweather Lewis, a few removes from me, suffered depression and his death is still talked about today. Was he murdered or did he commit suicide? That Starrs guy wants to dig him up but where he’s buried has since become a national park so no go. Starrs was the fella who dug up Jesse James. Say the word family and I’m off and running! LOL Would it surpise anyone for me to say I’m into genealogy? I doubt it.<g> "Genealogists don’t die; they just lose their census." Nell

Response:

I also was wondering the same thing-why there are not more discussion here on this newsgroup. True Scleroderma is not our choice-but we do have a choice to give our support, understanding and friendship to others. Yes, I have 2 Grandsons and each are a gem to myself and my hubby. We are leaving tomorrow to visit our son and his family-where everyone of them enrich our lives each time we visit. Joshua our Grandson I know has things planned for us to do with him-he is 6 soon to be 7. Upon our arrival he always looks in the suitcase for some treats that his Mawsie-that is me brings along for him. His major treat is to get to sleep with me on the weekends when he has no school. Since i need to sleep with so many blankets, it is his opportunity to play outerspace. He also looks forward to his Baltimore Baloney as he calls it. I have found him to be great therapy for me and he does keep me hopping as much as I can. Not only his he my Grandson but has turn out to be a big part of my life and my battle with Scleroderma. My oldest Grandson Eric who is 12 has taught me loads of things also-he is just so funny at things he says to me. Both are great therapy for me. Have a great day all Doris http://www.toad.net/~dreichard/

Response:

Hi,  my name is Tim.  I,ve been here for many years and I,ve been unhappy with the lack of postings.  There are many things here to discuss. I like you have SD.  It’s not much fun but we don’t have much choice .  If any . We do have a choice in how we handle it.  Now do you have a child or a grandchild  that makes your day?   It just might make my day to here it. Are your old friends all of the sudden not calling you?  Has your Md. changed something or made a suggestion that you are not sure of ?  I could go all night but I think that you have the idea.  As for myself I’m quite guilty of not posting because of all the wonderful people that have passed. Anne Y. is the only person that I know from the posts.  Now I would like to share this with all of you.  I was on the phone with my daughter and my 3 year old grandson wander another hotdog.  I told her to tell him I’d give him a knuckle sandwich.  He  said ok after he had his hotdog.  Sweet Dreams All   Tim

Response:

Hi, Tim! I have heard from you previously, I have a really great family, complete with four grand children ranging from 18 to 8. We have four children ranging from 40 to 22! The neat part is we started young, so we are still in our 50’s. We have two Doberman Pinchers that keep us amused. I have CREST and Lupus, and Sjorgrens. It seems that quite a few people that have one of the above, usually have a few others to keep it company! You gave me the information on the drug for motility. Thank you. I agree with Amy, You don’t have to go outside in the cold to meet friends. You can do it here.    Several of these people have been very kind to me, from the time I was first diagnosed (A year or so ago) to present. I was not only very angry, but I was very depressed, having been very active outside. I love to fish, swim, just mess around outside with my dogs. I thought  I was the only one with all of these problems. Boy was I surprised!     When I first discovered my GI tract including my esophagus was shot I was highly indignant,  like to eat, then I lost 30 lbs. That wasn’t too bad, new clothes!  My husband was very surprised, that clothes for women cost so much! I think what he said was something like good grief, I can buy a suit for the cost of two of your outfits, and still have material left over! ( He is a big guy) So if we are quiet sometimes, we are just lurking. Take care, stay warm. Wende

Response:

Hi Tim: There are lots of us around who read the posts but don’t post. I have had MCTD a form of SD for 25 years and all of my children are grown up. I was working when I first found out I had it and continued although it was hard until I was 62 and then retired on disability because I had Lung fibrois and it was too hard to continue working. I have had many ups and downs over the years and met a few really good friends on this board. Welcome feel free to talk about anything……..Gigi << Hi,  my name is Tim.  I,ve been here for many years and I,ve been unhappy with the lack of postings.  There are many things here to discuss. I like you have SD.  It’s not much fun but we don’t have much choice .  If any . We do have a choice in how we handle it.  Now do you have a child or a grandchild  that makes your day?   It just might make my day to here it. Are your old friends all of the sudden not calling you?  Has your Md. changed something or made a suggestion that you are not sure of ?  I could go all night but I think that you have the idea.  As for myself I’m quite guilty of not posting because of all the wonderful people that have passed. Anne Y. is the only person that I know from the posts.  Now I would like to share this with all of you.  I was on the phone with my daughter and my 3 year old grandson wander another hotdog.  I told her to tell him I’d give him a knuckle sandwich.  He  said ok after he had his hotdog.  Sweet Dreams All   Tim  >>

Response:

Question:

hi I have been diagnosed with lupus as far as blood test and my heart doctor  and I am wonder what some good sites to get good advice on what to do I am 54 years young with a bad heart  and now this but I don’t know that much about other than I have a constant pain in both hips any help would be appreciated B.S.Montag ga…@webtv.net

Response:

Good Evening B, I am sorry to hear about your diagnosis, but you are most welcome here. I can give you a good basic site, and some of the others will be able to help more with that. Try www.lupus.org. It has a section on the different problems of lupus. I think you will find people here to be friendly and helpful. We talk about anything, so feel free to jump in with questions or problems. Regards, BJ "B.S. MONTAG" <ga…@webtv.net> wrote in message

news:27591-3BF05D6B-702@storefull-285.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> hi > I have been diagnosed with lupus as far as blood test and my heart > doctor  and I am wonder what some good sites to get good advice on what > to do I am 54 years young with a bad heart  and now this but I don’t > know that much about other than I have a constant pain in both hips any > help would be appreciated > B.S.Montag > ga…@webtv.net

Response:

In article <27591-3BF05D6B-…@storefull-285.iap.bryant.webtv.net>, B.S. MONTAG <ga…@webtv.net> wrote >hi >I have been diagnosed with lupus as far as blood test and my heart >doctor  and I am wonder what some good sites to get good advice on what >to do

[] Try mine, and the links on it. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

On Mon, 12 Nov 2001 16:38:19 -0700 (MST), ga…@webtv.net (B.S. MONTAG)  wrote: >hi >I have been diagnosed with lupus as far as blood test and my heart >doctor  and I am wonder what some good sites to get good advice on what >to do I am 54 years young with a bad heart  and now this but I don’t >know that much about other than I have a constant pain in both hips any >help would be appreciated >B.S.Montag >ga…@webtv.net

Along with Andy’s site and the many links it has, if you are in the US, contact your local LFA chapter and they *should* be more than happy to send you some info to get you started.  The LFA site also has contacts for international lupus organizations. www.lupus.org

Response:

Question:

hi my name  is kathy   , i have inching , also pain in my back that feel like a snag os sliped disc , my doctor told me i had fybromyalgia and sent me to someone who knew more they said you would have to out rule lupus and scleroderma first , i have looked up everything i think it is scleroderma myself .

Response:

Sounds like you’re doing the right thing, seeing a doctor.  It’s the only way to get a clear diagnosis.  I hope it’s something that’s treatable. "A. Rausch" <5…@dbscorp.net> wrote in message

news:3bb5ec9a$1_1@athena.netset.com… – Hide quoted text — Show quoted text -> hi my name  is kathy   , i have inching , also pain in my back that feel > like a snag os sliped disc , my doctor told me i had fybromyalgia and sent > me to someone who knew more they said you would have to out rule lupus and > scleroderma first , i have looked up everything i think it is scleroderma > myself .

Response:

Question:

Andy wrote: > Glad he was decisive!

Me too!  He’s puzzled as to the cause.  The MRI showed pancreas divisum, but no strictures.  At that point in the discussion, he brought up the lupus again.  He said he would keep after it.  It took him two years to make a diagnosis of lupus on another patient. – Hide quoted text — Show quoted text -> [] > >I am to return in two weeks to see if all the changes were of any help. > Let’s hope so. > — > Andy [Editor, Austrian Philatelic Society] > For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> > For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> > For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

Response:

On Fri, 21 Sep 2001 13:27:32 -0400, "John W. Johnston, Jr." <wes…@microconnect.net>  wrote: >Now for the stuff that counts around here, doctor visits. >I saw my nephrologist today in the transplant clinic.  He spent over an >hour with me, as promised.  Here is what he came up with: >I do indeed have pancreatitis,

just another day in paradise eh, Wes? You are in my thoughts.  i’m glad you got some answers and hope that the future holds treatment that will make thing better. take care, kcat

Response:

Thanks KCat.  Do they make one of those wax buckets big enough to soak my head in? – Hide quoted text — Show quoted text -KCat wrote: > just another day in paradise eh, Wes? > You are in my thoughts.  i’m glad you got some answers and hope that > the future holds treatment that will make thing better. > take care, > kcat

Response:

<<The immunofluorescence of the kidney biopsy came back unclear for lupus.  It could not be ruled in or out.>> Sounds like the story of your life lately. <<  The electron microscopy study was not back yet.  It should be more definitive.  >> I hope it answers the questions once and for all.  It would be nice for you to know. <<He told me to continue to behave as one who has lupus, i.e. stay out of the sun, etc.>> Sounds like good advice. Take care, Sandra

Response:

Hi J, No biopsies of the mouth ulcers.  We covered so much ground today that I did not want to push my luck.  That’s the rheumy’s job anyway, but he didn’t do it either. – Hide quoted text — Show quoted text -J Wootton wrote: > Hello Wes, > Thanks for update. We’ll be watching for your updates and hoping for good > news at the two-week checkup. > As an aside, heard on our local news that laproscopic nephrectomy has > recently been started at one of our hospitals. > They featured a couple (hubby gave a kidney to wife). > So hopefully this will encourage others to do similar or the same. > I know my sister-in-law donated to her sister, but that was some years ago > and involved doing the surgery the hard way..both are doing well so what a > gift eh? > Did they do biopsies of the mouth ulcers too? > Hugs > J > "John W. Johnston, Jr." wrote: > > Now for the stuff that counts around here, doctor visits. > > I saw my nephrologist today in the transplant clinic.  He spent over an > > hour with me, as promised.  Here is what he came up with: > > I do indeed have pancreatitis, and he is going to inform my PCP that > > there is no doubt about that.  Amylase and lipase continue to rise.  He > > prescribed pancrease to try with every meal, and he is going to talk to > > the gastroenterologist to see if he wants to do one right away, or wait > > to see if things settle down. > > I am holding at least 15 pounds of fluid in my abdomen, legs and back > > due to renal malfunction and pancreatitis.  He doubled my dose of lasix > > to 80 mg. twice a day.  He also doubled my dose of Cozaar to 50 mg. > > twice a day for blood pressure control and help with proteinuria. > > The immunofluorescence of the kidney biopsy came back unclear for > > lupus.  It could not be ruled in or out.  The electron microscopy study > > was not back yet.  It should be more definitive.  He was able to see the > > sores on the roof of my mouth.  They have been acting up lately.  They > > looked like the crater type ulcers caused by lupus.  He told me to > > continue to behave as one who has lupus, i.e. stay out of the sun, etc. > > I am to return in two weeks to see if all the changes were of any help.

Response:

In article <3BAB7884.DA26F…@microconnect.net>, John W. Johnston, Jr. <wes…@microconnect.net> wrote >Now for the stuff that counts around here, doctor visits. >I saw my nephrologist today in the transplant clinic.  He spent over an >hour with me, as promised.  Here is what he came up with: >I do indeed have pancreatitis, and he is going to inform my PCP that >there is no doubt about that.  

Glad he was decisive! [] >I am to return in two weeks to see if all the changes were of any help.

Let’s hope so. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

Response:

Hi BJ, I’m sleeping pretty well, as long as I eat carefully.  Hopefully, I’ll be able to add more foods into my diet now.  They know me by name at the clinic now, and that’s not exactly a good thing.  I was happier when they saw me but once a year. – Hide quoted text — Show quoted text -BJ wrote: > Hi again Wes, > I am glad to hear that they are sure about the pancreatitis, in the sense > that they are treating. I hope that will make a big difference in how you > feel. Let us know how you progress. I think about you lots. My husband knows > you by name now. Are you sleeping? > Fond Regards, > BJ > "John W. Johnston, Jr." <wes…@microconnect.net> wrote in message > news:3BAB7884.DA26F57F@microconnect.net… > > Now for the stuff that counts around here, doctor visits. > > I saw my nephrologist today in the transplant clinic.  He spent over an > > hour with me, as promised.  Here is what he came up with: > > I do indeed have pancreatitis, and he is going to inform my PCP that > > there is no doubt about that.  Amylase and lipase continue to rise.  He > > prescribed pancrease to try with every meal, and he is going to talk to > > the gastroenterologist to see if he wants to do one right away, or wait > > to see if things settle down. > > I am holding at least 15 pounds of fluid in my abdomen, legs and back > > due to renal malfunction and pancreatitis.  He doubled my dose of lasix > > to 80 mg. twice a day.  He also doubled my dose of Cozaar to 50 mg. > > twice a day for blood pressure control and help with proteinuria. > > The immunofluorescence of the kidney biopsy came back unclear for > > lupus.  It could not be ruled in or out.  The electron microscopy study > > was not back yet.  It should be more definitive.  He was able to see the > > sores on the roof of my mouth.  They have been acting up lately.  They > > looked like the crater type ulcers caused by lupus.  He told me to > > continue to behave as one who has lupus, i.e. stay out of the sun, etc. > > I am to return in two weeks to see if all the changes were of any help.

Response:

Hi again Wes, I am glad to hear that they are sure about the pancreatitis, in the sense that they are treating. I hope that will make a big difference in how you feel. Let us know how you progress. I think about you lots. My husband knows you by name now. Are you sleeping? Fond Regards, BJ "John W. Johnston, Jr." <wes…@microconnect.net> wrote in message news:3BAB7884.DA26F57F@microconnect.net… – Hide quoted text — Show quoted text -> Now for the stuff that counts around here, doctor visits. > I saw my nephrologist today in the transplant clinic.  He spent over an > hour with me, as promised.  Here is what he came up with: > I do indeed have pancreatitis, and he is going to inform my PCP that > there is no doubt about that.  Amylase and lipase continue to rise.  He > prescribed pancrease to try with every meal, and he is going to talk to > the gastroenterologist to see if he wants to do one right away, or wait > to see if things settle down. > I am holding at least 15 pounds of fluid in my abdomen, legs and back > due to renal malfunction and pancreatitis.  He doubled my dose of lasix > to 80 mg. twice a day.  He also doubled my dose of Cozaar to 50 mg. > twice a day for blood pressure control and help with proteinuria. > The immunofluorescence of the kidney biopsy came back unclear for > lupus.  It could not be ruled in or out.  The electron microscopy study > was not back yet.  It should be more definitive.  He was able to see the > sores on the roof of my mouth.  They have been acting up lately.  They > looked like the crater type ulcers caused by lupus.  He told me to > continue to behave as one who has lupus, i.e. stay out of the sun, etc. > I am to return in two weeks to see if all the changes were of any help.

Response:

Hello Wes, Thanks for update. We’ll be watching for your updates and hoping for good news at the two-week checkup. As an aside, heard on our local news that laproscopic nephrectomy has recently been started at one of our hospitals. They featured a couple (hubby gave a kidney to wife). So hopefully this will encourage others to do similar or the same. I know my sister-in-law donated to her sister, but that was some years ago and involved doing the surgery the hard way..both are doing well so what a gift eh? Did they do biopsies of the mouth ulcers too? Hugs J "John W. Johnston, Jr." wrote: – Hide quoted text — Show quoted text -> Now for the stuff that counts around here, doctor visits. > I saw my nephrologist today in the transplant clinic.  He spent over an > hour with me, as promised.  Here is what he came up with: > I do indeed have pancreatitis, and he is going to inform my PCP that > there is no doubt about that.  Amylase and lipase continue to rise.  He > prescribed pancrease to try with every meal, and he is going to talk to > the gastroenterologist to see if he wants to do one right away, or wait > to see if things settle down. > I am holding at least 15 pounds of fluid in my abdomen, legs and back > due to renal malfunction and pancreatitis.  He doubled my dose of lasix > to 80 mg. twice a day.  He also doubled my dose of Cozaar to 50 mg. > twice a day for blood pressure control and help with proteinuria. > The immunofluorescence of the kidney biopsy came back unclear for > lupus.  It could not be ruled in or out.  The electron microscopy study > was not back yet.  It should be more definitive.  He was able to see the > sores on the roof of my mouth.  They have been acting up lately.  They > looked like the crater type ulcers caused by lupus.  He told me to > continue to behave as one who has lupus, i.e. stay out of the sun, etc. > I am to return in two weeks to see if all the changes were of any help.

Response:

Now for the stuff that counts around here, doctor visits. I saw my nephrologist today in the transplant clinic.  He spent over an hour with me, as promised.  Here is what he came up with: I do indeed have pancreatitis, and he is going to inform my PCP that there is no doubt about that.  Amylase and lipase continue to rise.  He prescribed pancrease to try with every meal, and he is going to talk to the gastroenterologist to see if he wants to do one right away, or wait to see if things settle down. I am holding at least 15 pounds of fluid in my abdomen, legs and back due to renal malfunction and pancreatitis.  He doubled my dose of lasix to 80 mg. twice a day.  He also doubled my dose of Cozaar to 50 mg. twice a day for blood pressure control and help with proteinuria. The immunofluorescence of the kidney biopsy came back unclear for lupus.  It could not be ruled in or out.  The electron microscopy study was not back yet.  It should be more definitive.  He was able to see the sores on the roof of my mouth.  They have been acting up lately.  They looked like the crater type ulcers caused by lupus.  He told me to continue to behave as one who has lupus, i.e. stay out of the sun, etc. I am to return in two weeks to see if all the changes were of any help.

Response:

Question:

Jane,  I wish that I had an answer on what to do for helping "yourself".   I believe that I have followed most of the advice…avoiding the sunshine, resting and napping when needed, adjusted my life style, pacing of time, moist heat, gentle massage, stretching exercises (mild), etc. etc. I even quit working prior to my diagnosis because I couldn’t function "normally" any longer. I take 400 mg of Plaquenil a day and Ultram.  I also hurt ssoooooo bad most of the time that I can barely stand it. ( the bad days far out number the good.) I wonder if accupuncture would help.  We now have a MD in our small town that is practicing the "Chinese" form of medicine.  She is in an office with her husband and another physician who practice "Western medicine".  I also wonder if Blue Shield of CA would cover such an experiment. I truly hope that your pain eases up and that you get to feeling better. Will keep you in my thoughts and prayers. What meds are you taking?  Are you getting something for your pain?  I know that when I was taking the prednisone I felt a lot better.  But the doc doesn’t want me on it on a reg basis due to other medical problems. Hopefully someone out there reading the posts with more experience and knowledge will have an answer. Sherry "Jane Daily" <Janes…@webtv.net> wrote in message

news:7569-3AB3708E-32@storefull-262.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> This *Turkey FMS* is really running this old girl down !!!!!  I am > soooooooo *sore*  Is there help out there, I also have lupus !  What can > I do to  myself to help ????? >  The Janester

Response:

This *Turkey FMS* is really running this old girl down !!!!!  I am soooooooo *sore*  Is there help out there, I also have lupus !  What can I do to  myself to help ?????  The Janester

Response:

Question:

Martha S. posted the following article in the Patients Support Forum http://brumley.com/renal/patientboard.html Dated  : November 30, 192000 at 02:35:34 Subject: Re: Questions about "creatinine clearance"… http://brumley.com/renal/patientmessages/9466.html Creatinine clearance is a measurement of how much creatinine (muscle waste) you remove or "clear" from your body in 24 hours. The test is performed with a 24 hour urine collection (plus a 24 hour bag collection if you are on capd or a sampling of the overnight bag if you are on ccpd) and a blood test. The resultant number that the nephrologist produces after the test is the amount of creatinine that you clear in 24 hours. The number is also coincidentally roughly equivalent to the percentage of residual kidney function that you have left. Because your creatinine measurement (done in a renal panel)is only significant relative to your size, age, sex, activity level, etc., it is good to have a measurememnt of creatinine clearance. There is excellent information about testing, terms, treatment, etc. at kidneydirections.com. – Martha S.

Response:

Carol posted the following article in the Patients Support Forum http://brumley.com/renal/patientboard.html Dated  : November 29, 192000 at 18:54:06 Subject: Re: Questions about "creatinine clearance"… http://brumley.com/renal/patientmessages/9463.html Sherry, I am trying to figure all of this out myself too.  My doctor told me today to start talking to my family about possibly donating a kidney for me.  All I kow is that my creatinine clearnace went awry in the last few weeks.  My kidney history is long and complicated… and starts with a diagnosis of lupus.  If you would like, you can email me directly at getca…@aol.com.   Carol

Response:

Malyce posted the following article in the Patients Support Forum http://brumley.com/renal/patientboard.html Dated  : November 29, 192000 at 00:59:40 Subject: Questions about "creatinine clearance"… http://brumley.com/renal/patientmessages/9454.html If someone has a problem with creatinine clearance… what exactly does that mean? I’ve been looking on the web trying to find answers but can’t seem to find enough info. Does anyone know about this? Peace, Sherry Malyce

Response:

Question:

Hi Kristi: I have a lot of muscle loss as I’ve really noticed just over the past couple years. I take muscle relaxers and I always wondered if that added to the muscle loss? Do you take relaxer as well? Do you have a lot of muscle pain? I sometimes am to weak to lift things and sometimes I will shake very bad after lifting something. I use to get it real bad after trimming bushes with the hedge trimmers. The next day I’d be so weak in the muscles it hurt to move… My legs get that way after walking a lot too. Have you asked your Rheumatoligist about this?  Are you sure it’s the lupus? Have you been checked for a possible stroke? That could effect your ability to lift or walk on one side of the body. Is their anything else that you have noticed besides the weakness and your leg turning inward? Is your speech been effected? Is your face drooping on that side?  IMHO you should call and make an appt to see your doctor. Please keep in touch and let us know how you are. I wish I could offer some more insight on this. Mary/az

Response:

I think the loss of strength is definitely something you want to mention to your doctor.  Lupus myositis is a fairly common symptom of lupus.  It can cause loss of muscle strength.  However, it’s usually not progressive or severe. What you’re describing sounds more severe.  It’s also possible, of course, to get a second autoimmune disorder along with lupus such as polymyositis or dermatomyositis. These conditions are covered by the Muscular Dystrophy Assn. (http://www.mdausa.org/research/index.html).  You can check their website for more information on these and related disorder. Also, Dr. Wallace tells a little about them in his THE LUPUS BOOK, rev. ed.  Keep in mind, I’m not saying that you have any of these.  It’s just that what you’ve said sounds very reminiscent of people I know with these disorders.  At any rate, I think it’s a very good reason to go back to your rheumatologist and let him know what’s going on.  It also wouldn’t hurt to have a neuro consultation.   Sandra BTW, muscle wasting disorders will cause a significantly increased CPK.  You might want to ask to have that checked.  Muscular dystrophy causes increased CPK’s in the thousands.  Myositis would also cause increases though not necessarily nearly as big.  Additionally, some people also get muscle biopsies for diagnosis; however, they’re not always necessary.  

Response:

Kristy,     I’m not a Dr., but… have you looked into something neurological? Maybe not lupus related?     My neighbor was a prison guard, I know that is not an easy job; it is good that you can be off while you are solving this puzzle. <s> — Nancy  <nfarrel…@infree.com> <KL…@webtv.net> wrote in message

news:5369-39F0E0F8-69@storefull-226.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Ok guys I hope somebody out there can help me with this. I’ve never had > this before. Well I have had bouts of it twice I have been so I could > hardly walk but now all down my left side the muscle is cramping up,when > I wake up it is to the point I can hardly stand it . My left arm is the > worst I can hardly lift anything. Went to store could not pick up even a > can of corn.I felt so embarrassed .Always I could hide this type of > thing before but now it is getting so I can’t. In the past when I would > have a spell of my body going crazy it would pass in a matter of days. > This has been going on for some time and I am off work because of it I > work as an officer at a prison and before I went off on disability it > was so noticible that the inmates would tell me I better take time off > before somebody hurts me. > Like I said my left side is the worst, I even walk with a limp and my > left foot is turning in. > The lupus is thru out my whole body I can’t think of anywhere it hasn’t > attacked. I have had it for 20 years and done pretty good but now I am > getting scared I wonder if I’m starting to get to the point that there > is nothing to do for this problem.I guess I’m hoping somebody out there > has had this type of muscle lose and it got better. >  So if anybody has suggustions feel free. >                           Thanks for being there  Kristi

Response:

Kristi, You never mentioned what meds yo take. I know pred and the dmards did that to me.I am doing well now after a long haul with antibiotic therapy as it isless toxic and allowed me to get off pred and all the other drugs,. Http://roadback.org has a protocol forthis. Just thought you should know someone is being helped.I am sick 20 yrs too.Been on antibiiotic therapy 4 yrs. Love Marge Marge

Response:

Ok guys I hope somebody out there can help me with this. I’ve never had this before. Well I have had bouts of it twice I have been so I could hardly walk but now all down my left side the muscle is cramping up,when I wake up it is to the point I can hardly stand it . My left arm is the worst I can hardly lift anything. Went to store could not pick up even a can of corn.I felt so embarrassed .Always I could hide this type of thing before but now it is getting so I can’t. In the past when I would have a spell of my body going crazy it would pass in a matter of days. This has been going on for some time and I am off work because of it I work as an officer at a prison and before I went off on disability it was so noticible that the inmates would tell me I better take time off before somebody hurts me. Like I said my left side is the worst, I even walk with a limp and my left foot is turning in. The lupus is thru out my whole body I can’t think of anywhere it hasn’t attacked. I have had it for 20 years and done pretty good but now I am getting scared I wonder if I’m starting to get to the point that there is nothing to do for this problem.I guess I’m hoping somebody out there has had this type of muscle lose and it got better.  So if anybody has suggustions feel free.                           Thanks for being there  Kristi

Response: