Question:
Hi Shelagh, Cindy has been in a flare for months now. She is already on honking big doses of pred. They have tried IV gamma and some other things too, but just can’t seem to get a handle on it. She is seeing another doctor hoping that he might have a fresh approach. Thought you might not know some of the details. BJ-Sk. Canada "Shelagh" <valleylu…@telus.net> wrote in message
news:xqop9.3453$Sk6.251591@news1.telusplanet.net… – Hide quoted text — Show quoted text -> "Ward" <jcwar…@earthlink.net> wrote in message: > > The pain is > awful especially in my knees some of the worst pain I have ever had I > sit and cry feels like someone has me in a vise grip. > All this last from bout 4 pm to 6 am the next day. | > >The neurologist I have been seeing wanted me to start Methotroxate > </snip> > Hi Cindy > Your knee pains and spinal related headaches and a mystery fever all > sound like what I had during part of last summer, > _it was a nightly occurence from 2am to 6am!_ > until I couldn’t take it anymore and I finally landed in emerg. with a > high fever and was immediately referred to the rheumy who knew it was a > sle flare. > The end result was my being started on a dosage of 200mg chloroquin (an > antimalarial) each day and continued on pred. (I was taking 5 mg./daily > and at the time was upped temporarily to 20mg/daily _till the chloroquin > kicked in_) and it worked within a month of treatment and I had no more > bad nights with knees or fever or headaches. > I am still being maintained on both 5mg of pred and the chloroquin > indefinitely. > I wish you luck with your quest for answers! > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus > Subgroup of BC Lupus Society > http://www.bclupus.org/ > and Lupus Canada > http://www.lupuscanada.org/
Response:
"BJ" <B…@sk.nojunk.ca> wrote in message Thought you might not know
some of the | details. </snip> Hi BJ, thanks you are right on! I had no idea she has had this ongoing for so long! Maybe the methotrexate will actually be her answer after all that time then…. let’s hope and pray! Take care of yourself….. and how is you COPD going? Any new changes for the better? Hopefully you are feeling somewhat better at least knowing you will be getting some answers ‘eventually’(re the mayo docs), instead of the agony of ‘not knowing what’s what or where to turn’. Wishing you all the best of good health (in as much as is possible right now!) — from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus Subgroup of BC Lupus Society http://www.bclupus.org/ and Lupus Canada http://www.lupuscanada.org/
Response:
Hi Shelagh, Yes, I am sure there is an answer out there for Cindy. She has been so brave through all this. She has developed Crohn’s as well, even on all the suppressing drugs. I am doing fine. I just take things as they come. I have learned not to worry much. I don’t even think about the COPD. It isn’t a problem for me right now. Wouldn’t have known I had it, if they hadn’t seen it on xray. I am still waiting for word on the Mayo consult. My blood problems are the biggest thing really. We just muddle through from day to day. I guess things aren’t so bad, as long as there is another day.<g> What are you doing for Thanksgiving? BJ-Sk. Canada "Shelagh" <valleylu…@telus.net> wrote in message
news:P%Gp9.4207$Sk6.413576@news1.telusplanet.net… – Hide quoted text — Show quoted text -> "BJ" <B…@sk.nojunk.ca> wrote in message Thought you might not know > some of the > | details. > </snip> > Hi BJ, thanks you are right on! I had no idea she has had this ongoing > for so long! Maybe the methotrexate will actually be her answer after > all that time then…. let’s hope and pray! > Take care of yourself….. and how is you COPD going? > Any new changes for the better? > Hopefully you are feeling somewhat better at least knowing you will be > getting some answers ‘eventually’(re the mayo docs), instead of the > agony of ‘not knowing what’s what or where to turn’. > Wishing you all the best of good health (in as much as is possible right > now!) > — > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus > Subgroup of BC Lupus Society > http://www.bclupus.org/ > and Lupus Canada > http://www.lupuscanada.org/
Response:
"BJ" <B…@sk.nojunk.ca> wrote in message guess things aren’t so bad,
as long as there is another day.<g> What | are you doing for Thanksgiving? </SNIP> Hi BJ: Glad to hear your copd isn’t at all disabling and that you are still on a positive note about everything. … hmm Thanksgiving? This year it comes on my twin sisters’ bday and my 30th anniv. so we are all (my mom and 5 of my 6 sisters) getting together for a ‘luncheon/goodbye visit(for us)/bday visit/thanksgiving/and early bday wishes for moi!’ Looking forward to seeing them all on the Monday and also tomorrow, Saturday I am seeing my mom and older sister for lunch and a visit, just the 3 of us which should be nice. I missed my sister’s bday 2 weeks ago so have a gift for her and haven’t seen my mom for that long as well …. so it is going to be a family weekend! What about YOU? ((Hugs and Happy Thanksgiving to you and your ‘family’)) — from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus Subgroup of BC Lupus Society http://www.bclupus.org/ and Lupus Canada http://www.lupuscanada.org/
Response:
Hi Shelagh, Happy birthday/ Anniversary wishes all around. It sounds like a wonderful family weekend. So much to be thankful for, isn’t there? We are going to the Hotel Saskatchewan on Sunday for their Thanksgiving buffet. My daughter is driving in from Balcarres to meet us there. I am excited. I haven’t seen her for a while. I plan to pig out. I will report on a CGT/ food thread. I am sure that all will want to hurl when they read how much I scarfed down. People alway wonder how a skinny chick like me can plug down so much food. I say the secret is elastic waist pants. They expand with my tummy, thus allowing for more food. It should be fun. Happy Thanksgiving to you and yours. BJ-Sk. Canada "Shelagh" <valleylu…@telus.net> wrote in message
news:p3Np9.9485$wU3.468410@news0.telusplanet.net… – Hide quoted text — Show quoted text -> "BJ" <B…@sk.nojunk.ca> wrote in message guess things aren’t so bad, > as long as there is another day.<g> What > | are you doing for Thanksgiving? > </SNIP> > Hi BJ: > Glad to hear your copd isn’t at all disabling and that you are still on > a positive note about everything. > … hmm Thanksgiving? This year it comes on my twin sisters’ bday and my > 30th anniv. so we are all (my mom and 5 of my 6 sisters) getting > together for a > ‘luncheon/goodbye visit(for us)/bday visit/thanksgiving/and early bday > wishes for moi!’ > Looking forward to seeing them all on the Monday and also tomorrow, > Saturday I am seeing my mom and older sister for lunch and a visit, just > the 3 of us which should be nice. I missed my sister’s bday 2 weeks ago > so have a gift for her and haven’t seen my mom for that long as well > …. so it is going to be a family weekend! > What about YOU? > ((Hugs and Happy Thanksgiving to you and your ‘family’)) > — > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus > Subgroup of BC Lupus Society > http://www.bclupus.org/ > and Lupus Canada > http://www.lupuscanada.org/
Response:
"Ward" <jcwar…@earthlink.net> wrote in message: > The pain is
awful especially in my knees some of the worst pain I have ever had I sit and cry feels like someone has me in a vise grip. All this last from bout 4 pm to 6 am the next day. | >The neurologist I have been seeing wanted me to start Methotroxate
</snip> Hi Cindy Your knee pains and spinal related headaches and a mystery fever all sound like what I had during part of last summer, _it was a nightly occurence from 2am to 6am!_ until I couldn’t take it anymore and I finally landed in emerg. with a high fever and was immediately referred to the rheumy who knew it was a sle flare. The end result was my being started on a dosage of 200mg chloroquin (an antimalarial) each day and continued on pred. (I was taking 5 mg./daily and at the time was upped temporarily to 20mg/daily _till the chloroquin kicked in_) and it worked within a month of treatment and I had no more bad nights with knees or fever or headaches. I am still being maintained on both 5mg of pred and the chloroquin indefinitely. I wish you luck with your quest for answers! from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus Subgroup of BC Lupus Society http://www.bclupus.org/ and Lupus Canada http://www.lupuscanada.org/
Response:
Hi Everyone There is no way I can catch up on posts right now. I just wanted to say hi. I have been fighting these fevers, they have gotten more frequent and run higher monday I had 104. It is more like a mechanism malfunction than an actual fever. I have had a ton of blood work no infections. Nothing breaks the fever except vicodin sometimes and sometimes extra prednisone. They start with joint pain in my toes yup sounds silly I know then works up to my knees , elbows, fingers then neck shoulders. The pain is awful especially in my knees some of the worst pain I have ever had I sit and cry feels like someone has me in a vise grip. All this last from bout 4 pm to 6 am the next day. Then I am all clammy and have sweats off and on all day. I get fever blisters and little bloody noses the next day. This all started in the first week of July and always the day of my treatment. So seemed obvious was a side effect. Well my neurologist (the dr doing treatment Gamma Globulin) says nope not the treatment as we changed it to every 2 weeks and I still had the fever on the same day I would have treatment. She said must be Lupus doing it. So don’t talk to her bout it anymore yup she said that. So I said I don’t want to do treatment anymore till I get this sorted out. At the same time another patient having the same problem developed a lung embolism and 3 weeks later is still in the hospital after a week in ICU and emergency surgery for a bleed in one lung. We both have the same problem with our feet and faces going numb she the dr blamed my problem on steroids and diabetes. Told me to deal with it. I have also had to start insulin twice a day 15 units am and pm. So my endocrinologist is sending me to the guy at Baylor I am still waiting for my appointment. And we will see what some one with a completely objective opinion has to say. The neurologist I have been seeing wanted me to start Methotroxate as I had said in an earlier post but I just don’t want to right now with the holidays coming. My daughter has had bronchitis 2 times in a month and trying to get her started on braces. I am having my other cataract off the 15th so my plate is full with out starting MTX I do want to try it though it is the only med for Lupus I have not tried and my last ANA were very high so could be that doing the fevers just seems weird that until recently they always were on wed. the day of treatment. This week I had Monday and wed. Last week had tuesday wednesday and thursday. Well sorry to be so long winded if anyone has had this or heard of it I appreciate any info I have not looked online hardly at all I just hurt so much my spine from the meningitis is a big problem. I thank you for that info as ibuprofen was one of the things I have been taking for fever!! You are all in my thoughts and I will try to catch up here please feel free to email me anytime. Take care Cindy W.
Response:
Hi Cindy, I have been worried about you, and am glad you posted with an update. I am sorry to hear that things are so bad. I hope you get in to see the new doctor soon. I was interested in your comment about a mechanism malfunction. You may well be right about that. Perhaps your autonomic nervous system is being affected by your lupus. I got the pain and sweating that you describe. It also stepped up my urine production, heart rate, and bowel function. Do you have any problems in those areas? I got the most incredible burning throughout my body. I lived with ice packs on my head and neck. My neuro thought that it was autonomic The only thing that helped me at all was being on IV which was running full tilt. It took about five days to work. Is there any way that could be tried for you? I was getting dehydrated, so I got admitted for that reason. I wish I had more to offer in the way of help. Just know that I am thinking about you, and pray for you all of the time. There is a solution for you. The new doc may well find it. BJ-Sk. Canada "Ward" <jcwar…@earthlink.net> wrote in message
news:3DA5D078.25B9201C@earthlink.net… – Hide quoted text — Show quoted text -> Hi Everyone > There is no way I can catch up on posts right now. I just wanted to say > hi. I have been fighting these fevers, they have gotten more frequent > and run higher monday I had 104. It is more like a mechanism malfunction > than an actual fever. I have had a ton of blood work no infections. > Nothing breaks the fever except vicodin sometimes and sometimes extra > prednisone. > They start with joint pain in my toes yup sounds silly I know then > works up to my knees , elbows, fingers then neck shoulders. The pain is > awful especially in my knees some of the worst pain I have ever had I > sit and cry feels like someone has me in a vise grip. > All this last from bout 4 pm to 6 am the next day. Then I am all clammy > and have sweats off and on all day. I get fever blisters and little > bloody noses the next day. > This all started in the first week of July and always the day of my > treatment. So seemed obvious was a side effect. Well my neurologist > (the dr doing treatment Gamma Globulin) says nope not the treatment as > we changed it to every 2 weeks and I still had the fever on the same day > I would have treatment. She said must be Lupus doing it. So don’t talk > to her bout it anymore yup she said that. So I said I don’t want to do > treatment anymore till I get this sorted out. At the same time another > patient having the same problem developed a lung embolism and 3 weeks > later is still in the hospital after a week in ICU and emergency surgery > for a bleed in one lung. We both have the same problem with our feet and > faces going numb she the dr blamed my problem on steroids and diabetes. > Told me to deal with it. > I have also had to start insulin twice a day 15 units am and pm. > So my endocrinologist is sending me to the guy at Baylor I am still > waiting for my appointment. > And we will see what some one with a completely objective opinion has to > say. The neurologist I have been seeing wanted me to start Methotroxate > as I had said in an earlier post but I just don’t want to right now with > the holidays coming. > My daughter has had bronchitis 2 times in a month and trying to get her > started on braces. I am having my other cataract off the 15th so my > plate is full with out starting MTX I do want to try it though it is the > only med for Lupus I have not tried and my last ANA were very high so > could be that doing the fevers just seems weird that until recently they > always were on wed. the day of treatment. This week I had Monday and > wed. Last week had tuesday wednesday and thursday. > Well sorry to be so long winded if anyone has had this or heard of it I > appreciate any info I have not looked online hardly at all I just hurt > so much my spine from the meningitis is a big problem. I thank you for > that info as ibuprofen was one of the things I have been taking for > fever!! > You are all in my thoughts and I will try to catch up here please feel > free to email me anytime. > Take care > Cindy W.
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