Mycophenalate and flares and denial and fed up!

Been on an increasing dose of Myco for a couple of weeks and am now on 1g twice a day. 2 weeks ago when I went up to this final dose I had a stressful few days and became overtired resulting in a flare. I am presuming it is a flare and not a reaction to Myco. Thing is, when should the Myco work effectively enough to prevent/reduce flares? I am also anaemic and awaiting an iron transfusion so that hasn't helped the fatigue :(

I also think I am experiencing some form of denial... diagnosed recently with CNS Lupus following loads of tests but mainly on clinical presentation. Now I am thinking maybe they have got it wrong as I don't seem to be responding to the Myco... but they would be sure for them to use such a strong drug wouldn't they?

Or am I being impatient (been on Myco 6 ish wks)....

Words of wisdom and support needed please :)

8 Replies

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  • Be patient. It could take a couple of months or more. Each case of lupus is unique. What works for one person may not work for the next, even with the same symptoms. It is frustrating for both the patient and the doctor.

    We have all gone through that phase of doubting the diagnosis. Thinking about it only makes things worse. What you think causes what you feel. What you feel affects your body.

    Get the book Fuill Catastrophe Living by Jon Kabat-Zinn. It will make a huge difference in stress reduction which will, in turn, cause your lupus to improve.

    Linda

  • So sorry to hear what an awful time you are having, dalediva. I'm not on mycofenolate myself, but the other immuno-suppressants can take upto 3 months to work. So I think you've got to give it a bit more time. Hopefully the iron infusion will help, but try to look after yourself & take it easy. You are so right, they would not give you this drug unless they were sure of you're diagnosis.

    Have you got a rheumy advice line you can phone? I think you need to let them know how bad you are feeling. They may up your steroids for a short time to get you through the worst.

    Love & hugs. X

  • I too am on mycophlenate, the full dose since Jan. I am still having flares now also suffering from side effects is depression, panic sudden anxiety. I feel the flare are being induced by constant colds, chest and sinus infections. But i am still hopeful that the mycophlenate will work as it has been well tolarated and successful treatment for many. Yes all lupus sufferers are different but i have tried aza, mtx and they have not been successful so i hope this will work. Xxx

  • I have just been increased to 3mg a day from 2mg, i started to notice a difference after about 5 weeks, was doing ok until the sun came out :( . back to the rheumy in 2 months, give it time, so many things can knock you back.

  • Hi I have been on mycophenolate for about 7 years now and found to much better than cyclosporine which was awful. It does take awhile to start working so hopefully about the 3 month mark you should notice the difference. I think over the years the worst is the depression but I do not know which drugs caused this as I am also on steroids and hydoxychloroquin. But I have recently started anti depressant and it has made a huge difference feeling like my old self mentally although I have to cope with the physical restrictions still.

    Keep looking forward, it may take time and there is always the hope of the new drug mentioned on here recently lupozor which is in trial and is offering an improvement in the way it helps lupus.

    Things do change :-)

  • Hi, sorry to hear you are having such a hard time. I have been on Mycophenolate for 7 years now. I am on 2,500mg per day. I went through the same as you thinking is this really working. I actually got so depressed I stopped taking them for 3 weeks. Which I would not recommend ever. It made me so ill I could barely move out of bed. So I went strait back on them and would never do that again. Sometimes you just don't realise you would be worse off without the medication.

  • Hi all just wondering if you would be interested in reading this FREE book at amazon on download Although it is called Fibromyalgia Causese and Cure it does make the connection I'm sure once you read this If you are a long term Luppie like me you will know that certain foods do not help our situ BUT there is much more to it than that Happy reading

  • Thank you so much for the advice... it's so nice to have advice from people who know how it atcually feels. I have never been known for my patience! Will hang on in there and contact my rheumy nurse.... Ta all...

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