Mycophenolate

Had an appointment with my rheumatologist this morning.  Some of you already know I had to stop taking mtx approx. 6 weeks ago due to a stubborn UTI. Can't go back on it either because it can cause complications with interstitial lung disease  that I've recently been diagnosed with. As most RA meds can also cause lung problems the number of meds I can now take has become very limited.  

Anyway,  a couple of meds that we can try were mentioned, namely - rituximab, azathioprime, gold injections and mycophenolate, which is the one that we've decided to try. Apparently it can also be beneficial to my ILC, leaves the body fairly quickly if I should get an infection and is relatively safe compared to other DMARDs, which all sounds good providing it works of course...here's hoping as I could certainly do with a change of luck!

I believe mycophenolate is more commonly used in other conditions like lupus and rarely used for RA  unless, as with me, there are complications with other health issues.  So I'm wondering if anyone here with RA  is using or has tried mycophenolate in the past as I'd like to hear your experiences?  I start taking it on May 9th, providing this darned UTI has cleared. I submitted my latest urine sample last thursday and should have had the results today, but apparently the container leaked, :-o so my son will be taking another sample to the lab in the morning as he works in the hospital I frequent, so I should have the results in the next couple of days. Here's hoping on that one as well......../

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  • hi wishbone,

    we do hear very occasionally of people on mycophenolate for RA but as you said not very often. Fingers crossed for you that this works.

    Regards

    Beverley (NRAS Helpline)

  • Thanks Beverly, you never know, but it looks like there's not much chance of anyone here with RA having any experience with mycophenolate. Still, will find out for myself soon enough if all goes according to plan.....

  • There's no point your son taking the sample Wishy, he's not the one with this b!$?$y persistent UTI!! There was a member posted here a little while ago who wanted to try mycophenolate for RD, I think he or she couldn't take other DMARDs for some reason but my brain's refusing to let me access that particular file so maybe you could use the Search box & see if you can find it. I hope it helps you & it goes without saying really but I sincerely hipe you don't have to delay starting it. Off to beddy bo's now. x 

  • Hope you had a nice sleep.

    I've had a search of the archives, plenty of info about  mycophenolate treating lupus and other diseases but very little relating it with RA. Good to read that it seems to be more tolerable than a lot of other meds though. 

    When rheumy suggested mycophenolate, I remarked that I'd heard it mentioned to me somewhere before. Later realised that it was you who first told me about it being used to treat ILD in a past thread. Think my chest consultant also mentioned it when I had my diagnosis. Can't for the life of me remember what he said about it though.

  • Sort of, Freya had a dream where running was involved so not terribly restful! I think it's as you say, mycophenolate isn't often used for RD but I hope as it seems it's more tolerable that's the case for you, & that it works of course.

  • A couple of my dreams of late have been all action... I've hurt my joints in the process of suddenly lashing out, usually trying to kick someone or something that's trying to do me harm. Not very nice and very likely a sign of a disturbed mind.  ;-)

    My rheumatologist said today that she thought RD was a far more appropriate term than RA. I couldn't agree more so think I'll have to get into the habit of using it. 

  • Yay! My Rheumy & her team use it too, have done for a while. I've used it for about 2 years & it's really got the message across, I've not had any of we all get that or next doors cat has it like you do with calling it RA.

    When I first started amitriptyline my GP warned me I may have vivid dreams for a while & I did, the kind you can recall, normally if I try to remember details of a dream I can't. You've not started a new med, apart from your antibiotics I mean?

  • No new meds. I put them down to being concerned about my ILD and this UTI...I'm a bit of a worrier anyway. They can be very vivid and like you I can remember quite a bit about them. I had one when I fell asleep in my recliner one evening and somehow managed to kick the living room wall, which is close to the side of the chair. Luckily it  was a stamping motion so the whole of the underneath of my foot made contact with the wall, otherwise I would probably broke a bone or two. It still hurt like hell though, including my knee and hip. Thankfully I haven't had one for a week or more so hopefully they've eased off.

     I did have a few  vivid dreams when I was taking MSTs for sciatica, but they didn't involve physically lashing out, and except for one were pretty pleasent as I recall.

  • Well as you say if something's playing on your mind it often follows that we have dreams. I don't think I've had such an active dream as that though, you could have done some real damage had your foot not been flat!

  • Hi wishbone,

    there was this post 3 years ago about mycophenolate and RA:

    healthunlocked.com/nras/pos...

    My colleague did reply to it back then but really is not commonly used as you know

    Beverley

  • Yeah, I'd read that thread, plus a good number of others. Looks like Victoria's post pretty much sums it up.

    Thanks again

  • Hi wishbone,

    I have been on mycophenolate since January I have just started to feel that it is working. I am taking it on its own I was taking hydroxy with it but I was getting headaches. I had to work my way up to the full dose, the only side effect that I have noticed is that it gave me a loose bowel in the morning but that has started to settle down now. I will be seeing my Rheumy nurse in May to see how things are going blood tests and all. Out of the other drugs I have been on so far this one at the moment seems to suit. I hope it works well for you x

  • Good to hear from someone who's on mycophenolate, thanks for posting Jaadee.  Glad it seems to have started to work for you and hope it becomes more effective before too long. My rheumy did say that it can take some time to start working - 3 months is a long time though and I could well be in some serious pain well before then if past experiences are anything to go by, so the sooner I'm on it the better.  All fingers crossed, metaphorically speaking that is, :-) that mycophenolate will do the trick for both of us.

    Best of luck to you Jaadee, and do keep me posted about how things progress.

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