Now Imuran ?????

[MikeG-2012]

Hi all,
Since April I've been on MTX (taken off due to side effects), then on CellCept. My Dr. took me off of the CellCept yesterday due to continuing "stomach issues". Tomorrow I start Imuran. Is this "normal", to not tolerate these drugs and switch from 1 to another?? Also, now I'm very anxious about starting yet another new drug, can anyone offer advice, suggestions, their experiences...for Imuran. I appreciate any help!
Thanks,
Deb H.

I've been on Immuran since the Mychophenolate quit working a year ago. I feel pretty good now, and so far, so good, no more flare-ups. I did just have my two six month boosters of RTX in may though. Immuran was my physician's choice due to the lesser chance of side-effects. Oh, and my dose is 150 a day too.

Hang in there Deb!

[LisaT]

I've been on Imuran since about November 2013... Recently increased to 150 mg because my rheumy thought it might help me get off the prednisone, as I was having trouble trying to decrease pred. Imuran has helped with my subglottic stenosis (which surprised my docs as usually only surgery helps), but my fatigue and pain persist. A nodule or lesion on my lung has disappeared since I started. Labs are good, looking at just labs one would think I'm in remission or at least well on my way, but if still feel unwell much of the time. However, looking back I'm much better than I was before starting the meds so maybe I can continue to improve. I was on methotrexate in the past for RA and hated it. Nauseous all the time, lost tons of hair. I tolerate Imuran better, although lately I've started having bad stomach issues some days. This is all just my experience, I don't know whether it is similar to others or even which things are symptoms of the disease vs. side effects of the drugs. I'm also on bactrim. Good luck! Let us know how you do on it.

[darl-p]

I have been on Imuran for about six years. I currently take 75 mg daily in the am. All my docs think this is the proper drug as there is much more data supporting it. I may have to get off it since I have a problem with gout, unrelated to diet, and the med to deal with the gout is incompatible with imuran. I have had no side effects from the imuran other than the frustration of cutting the small pill in half to obtain the added 25mg to get to 75.

[debhaz22]

Hi Mike,
question for you: when you're on Imuran do you HAVE to have the boosters of RTX?? My Dr. didn't mention this. Yet...
Thanks,
Deb (aka Bulldog )

[drz]

Hi Mike,
question for you: when you're on Imuran do you HAVE to have the boosters of RTX?? My Dr. didn't mention this. Yet...
Thanks,
Deb (aka Bulldog )

Some do but most don't have to take RTX too unless they have a flare or start to flare.

[debhaz22]

whew, thanks

[jakekell]

Deb,

I haven't had the Imuran, but tried RTX infusions, but reacted right away had to stop the infusion. MTX hair loss/infections, but it did help. I don't remember my stomach being an issue, but sores in my mouth so did the Folic acid been awhile. I don't do well with a lot of the drugs just the best I can waiting right to find out what is the next one.
Good luck would like to know how it goes.

Mary

[LisaT]

I've been practically begging for RTX because it seems to help so many people feel better, but my docs want to avoid it unless or until I NEED it.. When I finally asked my rheumy why he doesn't think I need it he spelled it out... Although I feel crummy, my bloodwork is good, my lungs look ok, and I have no major organ involvement or haemorrhaging. I take this to mean the downside/risks of RTX are not worth it 'just' to improve quality of life, and it should only be used when organs are being attacked or the disease seems to be life-threatening? Does this seem accurate? Does anyone know? I feel like it should be an individual decision. I would be willing to take some risk or suffer some side effects in exchange for feeling good or better some more of the time. I'm not being afforded that option. Deb, why are you wanting to avoid RTX? Sorry if this should be obvious... Still learning here...

[annekat]

I have been on Imuran for about six years. I currently take 75 mg daily in the am. All my docs think this is the proper drug as there is much more data supporting it. I may have to get off it since I have a problem with gout, unrelated to diet, and the med to deal with the gout is incompatible with imuran. I have had no side effects from the imuran other than the frustration of cutting the small pill in half to obtain the added 25mg to get to 75.

Could you take 50mg. one day and 100mg. the next, which would average out to 75mg. a day? Just wondering because I hate splitting pills, too. I don't do it currently but have sometimes found it difficult in the past, even with a pill splitter.

[MikeG-2012]

Hi Mike,
question for you: when you're on Imuran do you HAVE to have the boosters of RTX?? My Dr. didn't mention this. Yet...
Thanks,
Deb (aka Bulldog )

Hey Deb, sorry it tool me so long to look at this again. All summer I had been working four 10 hour days. So, I was going home and crashing nightly and trying to get things fdone around home on Fridays and weekends. Forum posts was a casualty of prioritizations in my life! )-8

I had the first four because I was in a flare-up when the former immune suppressant stopped working. So right after the last RTX in November, I started Immuran. The boosters of RTX were part of the standard protocol at six months after the first four.

So long story short yes, I had to have the RTX, but because of the flare up. The Immuran will hopefully keep the bad blood cells suppressed enough to keep the disease suppressed too. I hope the Immuran does the trick, because the mychophenolate did not!

Is that what you wanted to know?