Imuran Feedback

Let us know how you get on. I know some people complain about the side effects.

Hi Sharon. I’m in a similar position to you in the sense that I’ve had PMR since the end of 2014 and got down to 5mg then flared and have been creeping up ever since. Now on 16mg Pred. I have now been deemed steroid resistant and started taking Imuran about 5 weeks ago. It is meant to have a better side effect profile than methotrexate. I have noticed that my hair is coming out and thinning. However, I am not experiencing the sweats and shakes so much and seem to be doing better PMR wise. I have had a cold and cough a week in to taking it and it does seem to have knocked my immune system! But I guess that’s what it’s meant to do in order to lower inflammation. I have tentatively begun the first mg taper in the DSNS method. Here’s hoping!! Best wishes RD 

Actemra is being prescribed for GCA in the U.S., and used for PMR (wink, wink). I'm happy with it so far, although the list of possible side effects is daunting. I've been able to get from 12 mg Prednisone to 5.5 fairly easily over a 6 month period, which I couldn't do before.

Sharon, in the late 80s and early 90s I wrestled with Behcet's Disease for two years.  Imuran was one of my main medications and it was one that saved my life.  I did not have the same effects as I had with methotrexate in 2017.  With Behcet's I had 6 medications and my doctor worked so hard to keep me off methotrexate. My prednisone dose was 100mg for 6 months - tapered to zero during 6 months, then I had a major set back and started at 100mg all over for another year.  At the end of the 2nd year I was in remission.  I took Imuran the entire two years.

With PMR, I've had 60 mg of pred. and  have not tapered to 10mg.  I am hanging at 10 for at least another month.

The methotrexate, started in Nov. of 15, was really very bad for me.  It caused serious side effects and I ended up weaning myself off and telling the doctor I could not cope.  He told me it was o.k and he would not use it again.  My hair is growing back, too.  It took until now to stop seeing the side effects and I stopped the methotrexate January 2nd.  Imuran did not cause me to have hair loss,  My hair loss was minimal and it was from the high doses of prednisone. 

PMR is enough already.  It's so different and has its own life.  My doctor said today, "You understand, you might never get off the prednisone."  Yes. I know.  My goal is the lowest dose possible and I'm going to be SO happy.  

Everyone's body reacts differently to medications, that is for sure.  If you start the imuran, consider keeping a journal of how you are feeling.  Some folks do so well on methotrexate (that amazes me), but I'm happy and thankful they can gain its benefits.  

Please, let us know how you are doing. 

Hoping the best for you.  MariGrace

 

sharon, I came with PMR about 22 months ago, in May of last year a bad flare. Ended up in a wheelchair could not walk, put my shirt on or button it, need 30 mg to get any relief, now a 8 mg tapering to 7.5, using DSNS method. My Rheumy has suggested other drugs, but I will stay with Prednisone, I do not like the side effects of any drugs, not that being on Prednsone been a cakewalk. I am a very active person, and stay active, I believe that attitude is very important. Stay positive and try to smile on the rest of your journey. SMILING 🙂

To be on 8mg after about 2+ years is fine. It is what is called a physiological dose, about the same amount of corticosteroid as your body produces naturally in the form of cortisol. Your flare was possibly because you reduced too far - and once you let in a flare it can be more difficult to manage. 

I have had 4 flares in the 14 years I have had PMR, the first one was on top of untreated PMR, the others have been while reducing and at different doses. Each time I have got the flare under control and reduced again. It works - and they have been happy to give me months to get the dose back to roundabout the physiological dose.

Your doctors are being impatient - and it never works in PMR. PMR lasts a median for 5.9 years - you are nowhere near tha. Most doctors have totally unrealistic expectations about how their PMR patients will get their pred dose down. And in doing so often cause problems.

https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

Neither methotrexate nor azathioprine (Imuran) are guaranteed to get you to a lower dose of pred - and they have no effect on the PMR itself. They may work if it isn't PMR - but I'd want some evidence from the doctors why they might think that. Otherwise all they really do is change the way your body processes pred so you might get more bang for your buck - no guarantees..

If you had GCA there is a new drug, tocilizumab/Actemra, but it is a biologic which has only recently been approved for GCA and is a bit OTT for PMR in the early stages. It isn't sweeties either.

The international guidelines for management of PMR do not provide great support for azathioprine - see Recommendation 7. Azathioprine is a DMARD - and no other DMARDs are felt to have any role in PMR and it is now agreed that mtx is best used very early. My own personal opinion now is that maybe it is worth given them a short trial - providing they don't cause any side effects you can take them longer. They may help. But if they cause side effects - no. DMARDs do not have to be weaned off - you can stop them from one day to the next.

https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf