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View Full Version : Imuran side effects?



katarzena
07-10-2010, 02:32 AM
I've decided to make a new topic about side effects of this drug, maybe some fresh informations?
My doc told me I'll be probably put on imuran within 2 months (when I'm done with IV cyclo)

Please tell me there is no hair loss with this drug!

Luce
07-10-2010, 03:02 AM
I think hair loss is a very rare side effect, not nearly as likely as with cyclo. I'm surprised you're not going on to oral cyclo before Imuran though.
Some people tolerate it just fine although it did not work for me. I became severely anaemic and flared within 6 weeks of being on it.

elephant
07-10-2010, 03:42 AM
Imuran did not work for me, but everyone is different. I had a drug reaction to Imuran. I was only on it for 2 1/2 weeks.

Jack
07-10-2010, 04:30 AM
Agree with Lucy. It is more usual to stabilise on oral ctx before moving to the more benign Imuran.

stikker
07-19-2010, 12:21 AM
I had a symptom I had not read about anywhere. I started having headaches and spiking fevers after 2 weeks. They took me off aza to let me fight whatever I had. I didn't see my Wegeners guy, just my nephrologist. They worked me up for all kinds of infectious diseases. After 2 weeks I seemed better so they put me back on half dose of aza/imuran. Two weeks later I happened to have a quarterly appointment with my Wegeners specialist and he immmediatly said I had aseptic meningitis. Azathioprene is know to cause this. My nephrologist didn't know this fact and put me through a lot crap for nothing. Since I seem to be handling the half dose we are going to try increasing slowly and see if I can get back up to close to full dose. This was my choice to try because I don't feel like half dose is enough. It may come back and I may need another drug. He said this is not uncommon. I was not his first patient that day to have had this. If I or my doctor had know of this side effect I may have been treated differently. Now I feel like I need to spread the word.
Stikker1

julia
07-19-2010, 01:59 AM
[Please tell me there is no hair loss with this drug![/QUOTE]

When I was on cytoxon I lost about half of my hair. I had very thin hair to begin with. After I stopped cytoxon and was put on Imuran the hair began to grow back.

My hair is fuller than it has ever been.

katarzena
07-19-2010, 05:33 AM
Is it just me or it seems that people have more trouble (bad reactions etc) to Imuran then methotrexate? It seems to me like imuran is more gentle so doctors want to prescribe it over methotxate but still..

Terri
07-19-2010, 07:05 AM
Hi katarzena,
I started off with cytoxin, then Imuran and now on methotexate. I didn't have any problems with the Imuran and actually think I felt better with it but of the 3 choices, I guess mthx is the least toxic??
Good luck with whatever they put you on.

Sangye
07-19-2010, 07:58 AM
I had a symptom I had not read about anywhere. I started having headaches and spiking fevers after 2 weeks. They took me off aza to let me fight whatever I had. I didn't see my Wegeners guy, just my nephrologist. They worked me up for all kinds of infectious diseases. After 2 weeks I seemed better so they put me back on half dose of aza/imuran. Two weeks later I happened to have a quarterly appointment with my Wegeners specialist and he immmediatly said I had aseptic meningitis. Azathioprene is know to cause this. My nephrologist didn't know this fact and put me through a lot crap for nothing. Since I seem to be handling the half dose we are going to try increasing slowly and see if I can get back up to close to full dose. This was my choice to try because I don't feel like half dose is enough. It may come back and I may need another drug. He said this is not uncommon. I was not his first patient that day to have had this. If I or my doctor had know of this side effect I may have been treated differently. Now I feel like I need to spread the word.
Stikker1
Thank you so much for informing everyone. I had not heard of this-- no personal experience with imuran.

This is a classic example of why a Wegs rheumy should be overseeing all care for each of us. The other specialists do not often know the drugs as well, even if they're outstanding docs and even if they've saved your life. Thank goodness you're okay, Stikker.

Palmyra
07-19-2010, 08:56 AM
One more to add on a list of potential side effects w/ taking imuran. My daughter was prescribed it when her sole issue was with Crohn's disease (essentially Weg confined to the gut, with some of the annoying arthritic issues) and within a week or two she developed acute pancreatitis. Recovery from that is not quick or easy. No longer on her list of potential drugs to combat Weg :-(

Watch for upper abdominal pain, increasing daily, one to two hours after eating.

stikker
07-20-2010, 08:39 AM
Nephrology was running my case. I didn't want to rock the boat. Now I have switched over to my wegeners specialist. My health is more important than not hurting his feelings.
stikker

Sangye
07-20-2010, 08:43 AM
Nephrology was running my case. I didn't want to rock the boat. Now I have switched over to my wegeners specialist. My health is more important than not hurting his feelings.
stikker
Music to my ears. :)

elephant
07-20-2010, 08:44 AM
RIght on Stikker!

Jack
07-20-2010, 07:30 PM
Nephrology was running my case. I didn't want to rock the boat. Now I have switched over to my wegeners specialist. My health is more important than not hurting his feelings.
stikker

Oddly, many of the Vasculitis specialists at my hospital work in Nephrology although the team leader is a Rhumy - Prof Bacon.

Luce
07-21-2010, 04:56 AM
I still only see a nephrologist and a thoracic consultant, no rheumy or ENT etc. My problems are all lung and kidney related, no sinus issues etc. I was sceptical of the lack of rheumatologist in the beginning, but my docs have proved they do know what they're doing and one has worked with a vasculitis specialist from Cambridge university.
I do worry a little that the ENT niggles I have are neglected (fairly sure I have post-nasal drip and my right ear goes deaf at times) because they see these as minor WG problems that will improve with treatment, and they are at the moment. I would definitely push to see an ENT if I had the crusting/nose bleeds etc that a lot of you talk about.

Jack
07-21-2010, 05:37 AM
It was an ENT consultant who nearly killed me and the Pulmonologists don't seem very clued up either.

drz
07-21-2010, 05:55 AM
I still only see a nephrologist and a thoracic consultant, no rheumy or ENT etc. My problems are all lung and kidney related, no sinus issues etc. I was sceptical of the lack of rheumatologist in the beginning, but my docs have proved they do know what they're doing and one has worked with a vasculitis specialist from Cambridge university.
I do worry a little that the ENT niggles I have are neglected (fairly sure I have post-nasal drip and my right ear goes deaf at times) because they see these as minor WG problems that will improve with treatment, and they are at the moment. I would definitely push to see an ENT if I had the crusting/nose bleeds etc that a lot of you talk about.


I saw several ENT doctors for over a year about blood in nose. They just attributed it to dry winter air and recommended putting k-y jelly in nose and using a sinus rinse and spray. I have problems now with my hearing in only remaining ear that still has some hearing but ENT doctors aren't sure what to do to try save the remaining hearing. some times it seems to fade away at times.

Any ideas on what causes hearing to fluctuate? I worry it will just go like other ear and not come back at all.

Doug
07-21-2010, 06:23 AM
I'm not comfortable with ENT doctors after what I regard as botched care that left me deaf in one ear. This was related to shingles after the WG had been in remission over two years. I pointed out my WG and encouraged them to consult with the doctors caring for me for WG. They already had their answers, didn't need to consult because they had WG patients before. Blah-blah-blah! After the scarring ruined hearing in my right ear, they became concerned about how treatment would be high risk./low outcome, came up with the single most expensive treatment possible, which I decided was a cure worse than the hearing loss. ENT doctors!

elephant
07-21-2010, 06:50 AM
I would go to a ENT that see's lots of WG patients. The ENT I had did say that I had crusting in my nose but it comes and goes...but we have 15% humidity in our house.
My theory on the ear is that if it gets worse then it could be an indication that your WG is active or more active.
Anytime any of us had a sinus/ear/eye issue the doctors usually want to rule out infection, then if that does not work after taking antibiotics for three days ( it should kicki in by then) then it could be virus .....or the WG acting up.
My ears ring all the time, on/off, loud/ soft...I lost hearing in both ears, more on the left.

pberggren1
07-21-2010, 08:31 AM
I understand you Luce.

Doug, I also know what you mean about ENTs. I had to go through 8 before I found the good one I have now. I also think that I was not properly taken care of and then my hearing went.