Jetxav: Hello I am new and finding my way around this... - NRAS

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Jetxav

Jetxav profile image
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Hello I am new and finding my way around this site. Is anyone out there taking Mycophenolate for their RA? Most of the time I struggle with one infection or another, which was why I was put on this drug in the first place, having tried loads of others with no success! Would love to hear of any other experiences with it.

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Jetxav
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helixhelix profile image
helixhelix

There are a couple of people on here who take it, but may not be looking at posts that regularly. I think there are more people on this drug on the Lupus UK site (on this platform if you browse communities). So maybe get more experience there - it's another auto immune disease.

Jetxav profile image
Jetxav in reply to helixhelix

Thanks so much for that. I have been through all the 'normal' drugs for RA and always thought being put on this drug rather unusual. The Rheumy, as this site calls them, has left the hospital and her replacement I found tricky to talk to, so I feel left out on a limb at the moment and really need to discuss my situation with somebody. Keep well.

widgie profile image
widgie

Have .wegener's granulomatosis.... another auto-immune complaint and after over a year on Methatrexate have been put on Mycophenolate as the former did not seem to be having the required effect. I have had 2 weeks on a low dose.... this will increase several times over the next few weeks. So far, I feel less nausea and am somewhat less tired/ lethargic but wonder how it will be when the max dose is reached

Jetxav profile image
Jetxav in reply to widgie

I must look up your auto immune condition as am not familiar with it. I know the doses of Mycophenolate increase gradually. I was on 2000mg but have had to cut back, under the guidance of the rheumy, as I keep catching everything going such as colds, chest infections, bladder infections and gastric bugs. That in fact, was the very reason I was put on Mycophenolate in the first place. However, I find that it is making no difference as I am still catching all these things. It will be interesting to see how you get on. Nausea is a definite drawback sadly, but maybe you will be okay. Good luck.

widgie profile image
widgie

Thanks for that, jetxav. Just to come across someone else taking the same medication, albeit for a somewhat different condition, I feel consoling... and also the suggestion that it was normal for the dosage to increase thus. At present I have just started on 500mg a day but rising soon. Information is not so easy to come by. The nurse did the prescription on behalf of a rheumatologist I only saw once 15 months ago. The nurse is more accustomed by far with dealing with MTX patients. I have been phoning politely to have a review for some months now but there were always problems with central booking or whatever ( they could equally well have said that Father Christmas was too fat to get down my chimney!)

Decided to try a different tack.... ending in sobs... 'What can I do?, Where can I go?.... sniff I had a return phone call with an an offer of being fitted in at the end of the rheumatology clinic this month. Hurrah!

My major problem, apart from the condition itself, is that I have seen 3 different consultants in 3 different departments with 3 different results/ prognoses,. 1) 'It's a killer ' and referred me to 2 ) who examined me thoroughly, made few comments and referred me to 3) who suggested the disease was of limited expression.

Right, I obviously choose diagnosis#3 unless it's a bad medication day and I am sure it is #1

Does all this sound daft? I apologise for going on at such length. You don't deserve it. As a counter offer, you may bend my ear at any time.

No nausea so far. Far more energy but then they have started me on B12 injections. I just fear that with the max dose of Mycophenolate being introduced in a few weeks time I shall revert to the zombiform-condition of wrapping myself in a rug and sleeping in front of the tv

Best regards

Ena

Jetxav profile image
Jetxav in reply to widgie

Thanks for your reply widgie. One thing you mentioned was Vitamin B12. I must ask the rheumy if that's a good thing for me.Heard today must have a total hip replacement, so am on a list now, which is about four months long. Once that's sorted out next year they'll replace my knee. The future isn't looking that great at this moment. Take care.

Regards Carol

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