I might be put on Imuran. I'm wondering what I should expect for side effects?

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Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 11/7/2009 8:06 PM (GMT -7)   
I have been on Plaquenil for 1 1/2 yrs now.  I felt better for the first several months, but since then it hasn't seemed to be working as well as I would like.  I have had several new problems happens.  The worst for me has been mild-moderate-sometimes  severe leg pain in my quads..at two separate times the pain and weakness that comes has caused me to need the help of a wheelchair to relieve my legs and help with me getting around.  I just saw a new Rheumatologist a few days ago, and he's suggested that I start on Imuran.  The tests are happening to see if I can go on it safely.  I'm wondering what I can/possibly should expect from this medication?  The idea of something new scares me if I'm completely honest.  I was nervous with starting Plaquenil, as I experienced harsh side effects in getting used to Tegretol years prior and that completely changed my life..I've got used to the Plaquenil quite a bit easier..but still the thought of changing meds, and Imuran being a totally different class of meds altogether makes me VERY nervous..does anyone have any experiences on that med that they can share with me?  Or any good advice?  Thanks.
 
 

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/7/2009 9:12 PM (GMT -7)   
it is possible to end up with some nausea I deal with it by taking it before bed.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 11/7/2009 9:43 PM (GMT -7)   
I've been on Imuran for about 18 months now....no side effects for me. I have a friend with Crohn's who's been on Imuran for many years; no problems.

I have heard it can cause dangerous hematological problems, so you must have blood work done on a regular basis to monitor things. If you suddenly start developing bruises or problems with your blood not clotting if you have a scratch, see your doctor IMMEDIATELY. I think that this is a rare side effect.

Good luck!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/8/2009 12:12 AM (GMT -7)   
Hi

I know exactly what you mean about worrying when taking a new medicine and think most of us have the same feelings.


I have been taking Imuran for over ten years with no problems at all. I would take it any time in preference to Prednisone with all its harmful side effects.

Start it very slowly to let your body get used to it and avoid the most common initial side effect of nausea. I started with 25 mgs every other day for a week then 25 mgs a day for a week and built up that way. I was advised to take it after the evening meal. I and others feel that it helped sleep a little although that useful effect isn't mentioned anywhere.

It is very important to have frequent blood tests to make sure it isn't affecting blood counts or liver. Something like every two weeks for a couple of months then every month depending on what your doctor advises. Now I have the tests every 3/4 months.

I suggest not stopping the Plaquenil. Mixes of meds are the norm these days. Each sort of drug brings its own particular benefits and those of Plaquenil are endlessly impressive, apart from the obvious. For example it reduces cholesterol.
By taking a cocktail of drugs it is possible to fine tune then get the maximum benefit from each with the minimum of effective dosing, thus further reducing the risk of bad side effects.

These days the top doctors recommend staying on Plaquenil even after major therapies, as a sort of insurance and because of all its benefits.

Imuran might seem like a whole new class of drugs but in practice its use is common and very well established. Just think of it as another disease modifying medicine. I have not noticed that I am more prone to infections nor has anybody else I know who takes it. We do not take it at the high doses used to suppress the immune system in organ transplant rejection therapy. Many of the severe side effects mentioned relate to transplant use. There is a test available that can indicate who is likely to respond better to the Imuran without side effects. I can't remember what it is called but your rheumy definitely should know and know if it is available.

Another option in some cases when the Plaquenil isn't enough is to add another antimalarial called Quinacrine. I do not know if that is suitable in your case. I wonder if testing has been done to make sure about the causes of your leg pain and weakness, muscle testing for example. Make sure the tests for anti phospholipid antibodies have been done.

Best of Luck - I hope it does help you but you can't know until you try.

BB

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/8/2009 7:52 AM (GMT -7)   
I was on Imuran for about 1.5 years with no side effects. In my case, it did nothing for me either!

I moved on to Cellcept which turned out to be my personal miracle med.

I agree that the rule of thumb these days is to stay on Plaquenil regardless. They think it acts as a "retardant" to slow the inflammation response of lupus, sjogrens & RA -- so in theory we'd all be worse without it. I have to admit when I accidentally skip it I *do* notice a difference.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/8/2009 8:57 AM (GMT -7)   
Ellie,
 
What is your diagnosis?  Do you have an overlapping connective tissue disease or just lupus? 
 
I have been on imuran for 4 years and had no side effects for 18 months.  Then it lowered my wbc, rbc and platelets.  It had to be lowered to 100mg, then 50 and now I am only on 25mg and have no side effects.  Probably will be taken off it in the near future but there is no rush since I am having no symptoms and no side effects.
 
There is an increased risk of cancer with imuran.  I have had skin cancer 3x (basal cell carcinoma) in the past 2 years.  It could be debated that it is just due to spending much of my life in the sun but who knows for sure if imuran had any part.  I see the dermatologist every 6 months and have other appropriate and frequent cancer screenings.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 11/8/2009 2:37 PM (GMT -7)   
I think most of the people on Imuran dont have any side affects.
I cant tolerate imuran get sick, I get a fever, joint pains and just bad feeling all over my body.
I have tried it to times the first time I ended in the hospital (sorry not trying to scare you) with 40°C fever.
It stopped as soon as they took me of imuran and gave me some pred.

The first time did not stop me from trying it again so it is not that bad.
But the same thing happend the second time so I just stopped taking it before I ended in the hospital :)

Good luck
25 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009
And now they think I have Lupus :S

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 11/8/2009 6:52 PM (GMT -7)   
Thanks to all of you in your quick response to my question. It means a lot to me. I have no one else around that can so closely relate to what I'm going through. I appreciate the life advice from those of you who have been on it. Thanks for the tips in taking it before bed, and also making me aware with what to expect, or what "should" happen in regards to regular testing. I guess it does make sense in several ways to stay on the Plaquenil. You know how when you go into a specialists office your brain can turn to "mush" and things get hard to retain? I'm improving when it comes to being prepared for appointments, but I didn't quite catch if I am going to be told to go completely off the Plaquenil once I start Imuran. I guess those will be future questions for me to ask.

As far as testing for what's happening to my legs...that should be happening in the near future. I have not been impressed with the Rheumatologist that I've been seeing for the last 2 years, and that is why I have sought out the second opinion. I have been having trouble with my quads for over a year now, and have been nothing with frustrated with the lack of help received from my Rheumy. He's shown little to no interest. I came to an appointment one day, barely walking and using the walls to help me into his office...all I received was a quick 5 min appointment, was told I was having myalgia, and "see you again in three months." Since then, it's been not that much better...I am so thankful that this new doctor is going to help me get to the bottom of what's going on. I was once (and hope to be again) a very active person. I loved to train to run, and 3 years ago ran a 1/2 marathon. Now I'm suffering hugely if I go for a 10min walk:( I don't fully understand all the tests that he's going to have done on me..I'm a little confused right now. He wants me to see a neurologist specifically for what's happening in my quad muscles, and also work. There was some specific test (don't remember what for) that he said needed approval of funding to send me to the states at the Mayo Clinic to get done.....any idea what that could be?

A few people have asked me what my diagnosis is...well I have noticed other peoples signatures on the bottom of their posts, and I will try to type out what I have the best I can. Thanks again everyone, and I look forward to more communication in the future.
**It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops**
 
Dx: Diagnosed with Epilepsy Jan 2005 and put on Tegretol, Diagnosed with SLE July 2007, and take Plaquenil


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/8/2009 6:59 PM (GMT -7)   
Ellie27 said...
I'm improving when it comes to being prepared for appointments, but I didn't quite catch if I am going to be told to go completely off the Plaquenil once I start Imuran. I guess those will be future questions for me to ask.

A few people have asked me what my diagnosis is...well I have noticed other peoples signatures on the bottom of their posts, and I will try to type out what I have the best I can. Thanks again everyone, and I look forward to more communication in the future.


P.S. Ellie, I forgot to mention that if you look at my signature you'll see that I'm on BOTH Imuran and Plaquenil, as well as a lot of other meds. It's not that uncommon to be on both. Best wishes....JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

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