Question:
OK….re Imuran I also take 150mg once daily and I’ve been on it about 8 weeks now. I find it pretty good, a little nausea in the first week then thats it (I also get gut problems from meds as I have an ulcer) the dose is up to 2 mg/kg/day standard dose. I weigh about 78kg (thanks prednisone) so the rheumy went straight on to 100mg, but with your gut you might be better to start at 50mg no matter what they say. Then after tolerating that for 4 weeks we pushed up to 150….he’s thinking about 200 but watching my white cell count. It has dropped my ANA and ESR significantly and improved my symptoms. Takes 4 weeks or so tpo feel better so dont panic. You need to have fortnightly bloods initially then 1-2 monthly to check LFTs and blood count – it is an immunosuppressant /cytotoxic so you don’t want to drop your white cell count too much. It is widely used as an antirejection drug after kidney transplants etc…keeps them off prednisone I’d say give it a try Certainly nicer thenDHEA or MTX…if it doesnt work youve lost nothing Lyndal "ward" <wish…@aol.com> wrote in message
news:20020717165431.07698.00001316@mb-da.aol.com… – Hide quoted text — Show quoted text -> Hey Janers I did try imuran earlier im my Lupus journey and it did upset my > tummy like all the other meds do. I tried tham all before Gamma and had same > trouble. > Hope all this works I thought you had already left that is how out of it I am > lol was a tough week. I figured out what they did to make me reject my IVIG > last week I can not go faster than 75 or 100 on the infusion drip ( technical > term there. I get 50 grams > Well one of regular nurses quit and the temp put me at 150 last week then > today again but I woke up and discoverd it so got half at 150 and half at 75 we > will see… > Anyway take care you are in my thoughts. I am still gonna call when I get a > chance and you get through this. (0: > love Cindy
Response:
I was on 150 mgs. of Imuran for five years. Other than initial nausea and nausea if I took it on an empty stomach I tolerated it quite well. I was also taking Zantac to protect my tummy from all the pills I was taking, and that helped. It kept my disease at bay for those five years with occasional flareups but no serious organ involvment until now – but that’s my fault, not the Imuran. I stopped all my lupus meds a year ago on my own and now I’m in the worst flare ever and I’ve *graduated* from being able to using Imuran to using Cytoxan (severity of my symptoms warranted this along with 60 mgs pred for time being). If you try it and have initial nausea, don’t give up right away – it may take a few weeks but I think the nausea will probably subside, have something in your tummy when you take it, spreading out the dosage throughout the day can help sometimes, and use if you can take Prilosec or Prevacid or something to protect your tummy that’s great, too… sorry your innards aren’t cooperating with your body and you need to start the Imuran, but I can say it worked well for me when I gave it the chance. I’m hoping it will help you thru your time right now as well. Karena ke…@aol.com
Response:
Thank you, thank you, thank you. I mean that with all my heart. I have no clue as to what CC will tell me but I will go with what they say. I appreciate "all" your comments and it really helps to come here and "let it all out" and ask questions, knowing someone will help. That is a comfort people.. janers
Response:
Andy wrote: > As I recall, pellagra is a vitamin deficiency, common in those eating > polished white rice and no vegetables. Sounds like a B-complex lack; > you’d get Bs in the brown husk of the rice.
Yep, sounds right. > You’ll be amused to know that a firm in UK makes a good living exporting > wholemeal pasta to Italy!
HeHe Strike one for brain-fog, I read and re-read this and didn’t "get it" until today. Maybe they could sell rice to China too (or maybe they already do). <g> J
Response:
Also, go to http://www.lupus.org/topics/cytoxan.html. They have a section on Imuran. J will be so proud of my computer skills. <g> BJ- Sk. "Janers" <rojak…@bright.net> wrote in message
news:AGdZ8.3353$pv6.350638@cletus.bright.net… – Hide quoted text — Show quoted text -> HI, there or should I say Good Morning. > I went to my rheumy yesterday and sure enough, I am in a flare again. > GEE, ya wonder why? Esp with what is coming? Nawwwwwwwwwwww…. > Anyways, she wants me to ask the CC rheumy who will see me, IF she feels > imuran is for me. > NOW my question to you guys is "does this drug cause any GI side > effects, heart burn stuff like that. I know, I know, hold on until you > find out IF you have to take it. Well I was told 3 times now that I > might, so after this achalasia is taken care of (crosses everything she > can cross) well they are going to try and settle this lupus stuff down > too. wwhhhaaaaaaaaaaaaaaaa……always something. > Ok, well How do you, or who ever is on Imuran take it, pill form, shots, > what? > I have on and off again liver enzymes that go up, for no apparant > reason, and when YOUNGER,, yes I was young once, LOL I had some type of > liver infection they called it. A Riboflavin deficiency?? YOu got to > remember this was early 50’s. OK< now quit laughing. I am 57. LOL. > So what you think about using Imuran with this type history, and my GI > problems. Any suggestions on drugs to try? I thought of DHEA but no > one wants to swing with me LOL. MTX, is definately out rheumy says. I > have little joint pain, most is inside pain, and starting to have some > bladder problems as well. > MY Rheumy did indeed confirm what he surgeon said, the lupus and MCTD is > messing up my inners. Ain’t that grand?? NOTTTTTTTTTTTTT…. > I am active and mad at the same time, is that possible? YOU bet ya. > Fight I will, but damn I can still shed some tears too. > OK< answers appreciated. OH, and while I sleep do you guys post? Am I > the only one on EST? Every morning lots of posts, evening not many. I > guess I just check up on you guys to to much. So easy to hit that > button to the NG. > OH, RUTHIE, where are you???????? > hugs to all > janers > — > "Dream what you want to dream; go where you want to go; be what you want > to be, because you have only ONE life and ONE chance to do all the > things you want to do"
Response:
Hey Janers I did try imuran earlier im my Lupus journey and it did upset my tummy like all the other meds do. I tried tham all before Gamma and had same trouble. Hope all this works I thought you had already left that is how out of it I am lol was a tough week. I figured out what they did to make me reject my IVIG last week I can not go faster than 75 or 100 on the infusion drip ( technical term there. I get 50 grams Well one of regular nurses quit and the temp put me at 150 last week then today again but I woke up and discoverd it so got half at 150 and half at 75 we will see… Anyway take care you are in my thoughts. I am still gonna call when I get a chance and you get through this. (0: love Cindy
Response:
On Wed, 17 Jul 2002 08:46:59 -0400, "Janers" <rojak…@bright.net> wrote: – Hide quoted text — Show quoted text ->HI, there or should I say Good Morning. >I went to my rheumy yesterday and sure enough, I am in a flare again. >GEE, ya wonder why? Esp with what is coming? Nawwwwwwwwwwww…. >Anyways, she wants me to ask the CC rheumy who will see me, IF she feels >imuran is for me. >NOW my question to you guys is "does this drug cause any GI side >effects, heart burn stuff like that. I know, I know, hold on until you >find out IF you have to take it. Well I was told 3 times now that I >might, so after this achalasia is taken care of (crosses everything she >can cross) well they are going to try and settle this lupus stuff down >too. wwhhhaaaaaaaaaaaaaaaa……always something. >Ok, well How do you, or who ever is on Imuran take it, pill form, shots, >what? >I have on and off again liver enzymes that go up, for no apparant >reason, and when YOUNGER,, yes I was young once, LOL I had some type of >liver infection they called it. A Riboflavin deficiency?? YOu got to >remember this was early 50’s. OK< now quit laughing. I am 57. LOL. >So what you think about using Imuran with this type history, and my GI >problems. Any suggestions on drugs to try? I thought of DHEA but no >one wants to swing with me LOL. MTX, is definately out rheumy says. I >have little joint pain, most is inside pain, and starting to have some >bladder problems as well. >MY Rheumy did indeed confirm what he surgeon said, the lupus and MCTD is >messing up my inners. Ain’t that grand?? NOTTTTTTTTTTTTT…. >I am active and mad at the same time, is that possible? YOU bet ya. >Fight I will, but damn I can still shed some tears too. >OK< answers appreciated. OH, and while I sleep do you guys post? Am I >the only one on EST? Every morning lots of posts, evening not many. I >guess I just check up on you guys to to much. So easy to hit that >button to the NG. >OH, RUTHIE, where are you???????? >hugs to all >janers
Hi Janers, This is not a scientific opinion, but I do have some knowledge of Imuran. It is an immunosuppressant that has been around for a long time. It was one of the first drugs Dr. Thomas Starzl used when he pioneered the liver transplant. It works well, with fewer side effects that Cyclosporine. It does not mess with lipids and blood pressure as much, if at all. Here’s the thing though, and why transplant centers don’t use it much anymore, it suppresses the immune system across the board. Cyclo and FK-506 are more selective on T-cells, only suppressing what is necessary for the patient to keep the graft. But you know, blanket suppression is probably what a lupus patient needs, and therefore a good thing. Hope this helps.
Response:
In article <3D35A98D.5B309…@execulink.com>, J <jwoot…@execulink.com> wrote [ >http://www.nap.edu/books/0309065542/html/123.html Keep clicking on the >"next page", >they describe a condition call pellegra but that's related to niacin I think >(which works with riboflavin) and describe rashes and gastro problems.
As I recall, pellagra is a vitamin deficiency, common in those eating polished white rice and no vegetables. Sounds like a B-complex lack; you'd get Bs in the brown husk of the rice. You'll be amused to know that a firm in UK makes a good living exporting wholemeal pasta to Italy! -- 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:
In article <3D35A116.36444…@execulink.com>, J <jwoot…@execulink.com> wrote [ >Lyndal and Andy are overseas. Maybe their evening is our morning?
True, but a different sea. Stand facing the North Pole. Lyndal is on your left, I'm on the right. OK, since the world is round you'd get there eventually either way, but that's the quickest 
She's Australia, so her morning is your previous teatime! I'm UK, 5 (6?) hours ahead of USA east coast. -- 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:
Janers wrote: > [] > MY Rheumy did indeed confirm what he surgeon said, the lupus and MCTD is > messing up my inners. Ain’t that grand?? NOTTTTTTTTTTTTT…. > I am active and mad at the same time, is that possible? YOU bet ya. > Fight I will, but damn I can still shed some tears too. > OK< answers appreciated. OH, and while I sleep do you guys post? Am I > the only one on EST? Every morning lots of posts, evening not many. I > guess I just check up on you guys to to much. So easy to hit that > button to the NG. > OH, RUTHIE, where are you????????
You bet’cha Janers, Fight but tears are allowed too. Lyndal and Andy are overseas. Maybe their evening is our morning? I post on purpose in the mddle of the night, just to bug ya, LOL Now don’t go losing sleep over it, or my bugging ya will work <g> Hope you get your answers. http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202077.html Looks like there might be some "upset" at the beginning..see "Common". (but everyone is different). J
Response:
Sure am..<g> J – Hide quoted text — Show quoted text -BJ wrote: > Also, go to http://www.lupus.org/topics/cytoxan.html. They have a section on > Imuran. J will be so proud of my computer skills. <g>
Response:
could be Janers, could be (niacin and riboflavin) and in the early 50’s we didn’t know then what we’re supposed to know now about foods and/or these nutrients are now included in foods that we (most of us) eat. You might want to ask to get checked for that.. some interesting reading comes up but either my computer or the web’s too slow. http://www.nap.edu/books/0309065542/html/123.html Keep clicking on the "next page", they describe a condition call pellegra but that’s related to niacin I think (which works with riboflavin) and describe rashes and gastro problems. Maybe it’s worth talking to your docs about. Probably doesn’t cure Lupus but might be a clue to your digestive and/or make it easier to take some meds, if the nutrition needs rebalancing because of "inherited condition". And could have been that your mother had nutritional deficiencies. Maybe I did too..for months because of nausea, (when pregnant) all I ate was choc chip cookies and milk, late at night..so can happen. HTH J – Hide quoted text — Show quoted text -Janers wrote: > [] have on and off again liver enzymes that go up, for no apparant > reason, and when YOUNGER,, yes I was young once, LOL I had some type of > liver infection they called it. A Riboflavin deficiency?? YOu got to > remember this was early 50’s. OK< now quit laughing. I am 57. LOL. > So what you think about using Imuran with this type history, and my GI > problems. Any suggestions on drugs to try? I thought of DHEA but no > one wants to swing with me LOL. MTX, is definately out rheumy says. I > have little joint pain, most is inside pain, and starting to have some > bladder problems as well.
Response:
Hi Janers, I am on Imuran ( 150mgs ). It is in pill form, and I take it all at once with my evening meal. I have a lot of gut problems too. Just about everything I take upsets my stomach. I also have poor esophageal motility. It takes quite a while for Imuran to work. I will never go off the drug now. It didn’t seem to cause any digestive problems once I got used to it. It has allowed me to reduce the amount of prednisone I have to take. I think it is worth a try. It may cause a little nausea at first. I say go for it. BJ-in hot Sk. "Janers" <rojak…@bright.net> wrote in message
news:AGdZ8.3353$pv6.350638@cletus.bright.net… – Hide quoted text — Show quoted text -> HI, there or should I say Good Morning. > I went to my rheumy yesterday and sure enough, I am in a flare again. > GEE, ya wonder why? Esp with what is coming? Nawwwwwwwwwwww…. > Anyways, she wants me to ask the CC rheumy who will see me, IF she feels > imuran is for me. > NOW my question to you guys is "does this drug cause any GI side > effects, heart burn stuff like that. I know, I know, hold on until you > find out IF you have to take it. Well I was told 3 times now that I > might, so after this achalasia is taken care of (crosses everything she > can cross) well they are going to try and settle this lupus stuff down > too. wwhhhaaaaaaaaaaaaaaaa……always something. > Ok, well How do you, or who ever is on Imuran take it, pill form, shots, > what? > I have on and off again liver enzymes that go up, for no apparant > reason, and when YOUNGER,, yes I was young once, LOL I had some type of > liver infection they called it. A Riboflavin deficiency?? YOu got to > remember this was early 50’s. OK< now quit laughing. I am 57. LOL. > So what you think about using Imuran with this type history, and my GI > problems. Any suggestions on drugs to try? I thought of DHEA but no > one wants to swing with me LOL. MTX, is definately out rheumy says. I > have little joint pain, most is inside pain, and starting to have some > bladder problems as well. > MY Rheumy did indeed confirm what he surgeon said, the lupus and MCTD is > messing up my inners. Ain’t that grand?? NOTTTTTTTTTTTTT…. > I am active and mad at the same time, is that possible? YOU bet ya. > Fight I will, but damn I can still shed some tears too. > OK< answers appreciated. OH, and while I sleep do you guys post? Am I > the only one on EST? Every morning lots of posts, evening not many. I > guess I just check up on you guys to to much. So easy to hit that > button to the NG. > OH, RUTHIE, where are you???????? > hugs to all > janers > — > "Dream what you want to dream; go where you want to go; be what you want > to be, because you have only ONE life and ONE chance to do all the > things you want to do"
Response:
HI, there or should I say Good Morning. I went to my rheumy yesterday and sure enough, I am in a flare again. GEE, ya wonder why? Esp with what is coming? Nawwwwwwwwwwww…. Anyways, she wants me to ask the CC rheumy who will see me, IF she feels imuran is for me. NOW my question to you guys is "does this drug cause any GI side effects, heart burn stuff like that. I know, I know, hold on until you find out IF you have to take it. Well I was told 3 times now that I might, so after this achalasia is taken care of (crosses everything she can cross) well they are going to try and settle this lupus stuff down too. wwhhhaaaaaaaaaaaaaaaa……always something. Ok, well How do you, or who ever is on Imuran take it, pill form, shots, what? I have on and off again liver enzymes that go up, for no apparant reason, and when YOUNGER,, yes I was young once, LOL I had some type of liver infection they called it. A Riboflavin deficiency?? YOu got to remember this was early 50’s. OK< now quit laughing. I am 57. LOL. So what you think about using Imuran with this type history, and my GI problems. Any suggestions on drugs to try? I thought of DHEA but no one wants to swing with me LOL. MTX, is definately out rheumy says. I have little joint pain, most is inside pain, and starting to have some bladder problems as well. MY Rheumy did indeed confirm what he surgeon said, the lupus and MCTD is messing up my inners. Ain’t that grand?? NOTTTTTTTTTTTTT…. I am active and mad at the same time, is that possible? YOU bet ya. Fight I will, but damn I can still shed some tears too. OK< answers appreciated. OH, and while I sleep do you guys post? Am I the only one on EST? Every morning lots of posts, evening not many. I guess I just check up on you guys to to much. So easy to hit that button to the NG. OH, RUTHIE, where are you???????? hugs to all janers — "Dream what you want to dream; go where you want to go; be what you want to be, because you have only ONE life and ONE chance to do all the things you want to do"
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