Has anyone experience of coming off mycophenolate? Since March I have been reducing from 2000mg slowly and now have just come off it completely. I'm really not feeling well, so tired, muscles hurt, constant headaches. I have several other diagnoses apart from vasculitis most recently an autonomic neuropathy/POTS which is thought to have another cause from an auto immune basis. Its hard to work out sometimes what is causing my symptoms but I have definitely been feeling worse after stopping mycophenolate. My specialist thinks my vasculitis is under control but has left me on 5mg prednisolone and hydroxichloroquine as a safeguard but wanted me off mycophenolate.
I just wondered if anyone else has experience of this, do you get withdrawal symptoms like prednisolone? Does it just take time to adjust ?
Thanks Jenny
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It's really weird coming across your question. I was told to stop about 3 months ago. In the past month I've felt dreadful. My limb muscles feel like I've got the flu, headaches, tired, loss if weight and my vasculitis systems are much more prominent. My husband has noticed the breathlessness and angiodoema more. I have HUVs.
Thanks for the response Sarah. Similar to me I feel like I have the flu and its hard to know what is causing the symptoms as I know mycophenolate takes a while to be out of your system. Hope you get some answers on Tuesday
I am on Mycophenolate Mofetil, following a kidney transplant, along with a number of other drugs. Regarding 'withdrawal symptoms' I really haven't a clue-my dosage was reduced from 3000mg(3g) daily to 2000my(2g) daily without any apparent problems. I do understand that this IS somewhat different to stopping it completely, but still. My Hospital Consultant, who reduced this drug-about four months ago-did need blood tests, in the following weeks. Does this mean that there could have been a problem? I had the impression that this was a 'just in case' measure.
Sorry that I can't be any more help Jenny. Hope all goes well for you.
Thnaks for the reply Andrew, all my blood tests have been fine, my consultant felt it was just a case of I didn't need the medication anymore and before I ask whether I maybe need to go back on it wondered if anyone had experienced this before. Its all guess work sometimes. Thanks
Hi Jenny14,
I must admit to being a bit confused as to why your Consultant would take you off Mycophenolate but leave you on prednisolone? Do you have steroid induced Addisons? Most Dr's reduce the pred to zero before reducing immunosuppressants. Did they give you a clinical rationale for this?
What type of Vasculitis do you have. Do your symptoms feel like a flare of the Vasculitis? There is a big difference between symptoms being under control whilst on immunosuppressants and maintained remission when off medications ( 5mg of prednisolone won't be terribly effective and hydroxychlorquiline isn't a usual " Vasculitis " med).
Apologies if there is an explanation for your Consultants actions!
Thanks for the reply, I have had so many diagnoses now that I really don't know what is causing my various symptoms.
My vasculitis is secondary to Sjogrens and I have neurological complications with it. I haven't got my normal vasculitis symptoms back but not feeling great at all. I have been on prednisolone for so long and even half a mg reduction affects me badly, it took me so long to get to 5mg that I think my doctors are happy for me to stay there. Hydroxichloroquine helps my other auto immune problems but when I had to stop it suddenly a few years ago my vasculitis really flared up.
My consultant did say I could go back on Mycophenolate if my symptoms returned I think I will just have to wait and see how things progress.
I have CSS and had my Mycophenolate increased from 2000 to 3000mg following a flare in 2011. My consultant has been pleased with progress since and is only now considering reducing the dose back to 2000mg at the end of 2016, i.e. after 5 years in remission. From your experience it appears to me that coming off Mycophenolate in one step, if that is the case, is not advised and should be reduced gradually.
John has been taking MMF for 9 years gradually increased to 2500mg daily and he was taking this for about 7 years and then this dose was reduced 2 years ago to 1500mg a day. He has been steroid free for 3 years now. The steroids were reduced very gradually long before ( about a year ) the doctors began to reduce the MMF. John did not experience any problems at all with the reduction to 1500mg but is much more cautious about reducing again. John has GPA.
Susan
jenny Which vessels were affected by sjogren's, may I ask? I'm curious as I have sjogren's though my V isn't from sjogren's as far as I am aware.
At first I had purpura/petechie rashes on my legs and was told my vasculitis was low grade. However I then developed neurological symptoms and it was called systemic. I had CNS inflammation and peripheral neuropathy with it, I now have an autonomic neuropathy the cause of that I have different opinions on. It has always been described as being caused by Sjogrens on my doctors letters.
Vasculitis can be a rare complication of Sjogrens.
Jenny
Thank you for sharing, Jenny. I was curious as to how Rheumatologists "differentiate" amongst similar diseases (RA, SLE, sjogren's etc) as they appear to co-exist.
I was symptom free of V (gpa/wg) for 2 years and on 2g/day of mmf. Reduced it to 1.5g (yes, thats 500mg a day less) and after a month had cough, headaches and flu like symptoms. Diagnosed as a relapse and needed chemo to put me right again. Have kept it at 2g since, with 5mg of pred.
That sounds very hopeful for the future. I was diagnosed last Saturday ANA positive ANCA positive PR3 191 by the Rheumatologist with GPA and ground glass opacities to both lungs Mon-Wed received 1 mg Methylprednisolone now on 60mgs Prednisolone, both kidneys and liver are ok, tinnitus in ears all else good. The next appointment with the rheumatologist is in 2 weeks to discuss Mycophenolate and Azathioprine he gave me the drug information last Wednesday. A week after I get another scan to see the improvement. I saw a GP at our local surgery who has been very helpful providing as much information as he has available. Funnily though the arthritis in my knee does not hurt and that is good isn't it?
I've been signed off work for 4 weeks, I'm trying to educate myself and my family any idea of the timeline for returning to work. I work for the NHS and I love my job. I am surrounded by so many supportive people at home, here and on the Facebook closed group.
After 8 years being free of gpa/wg symptoms my mmf has been gradually reduced from 2g/day to 500mg/day, with 5mg pred. The reason given is that the prolonged high dose has damaged my immune system, making me prone to chest infections, and it needs to recover. Hopefully the gpa/wg will remain in remission, time will tell.
I was taken off them without reducing the dose which surprised me. However, I had no side effects from this and have been in remission for 4 years. They tried to taper my prednisolone from 5mg-3mg and I got similar withdrawal systems as you are getting with mycophenolate. I have been on them for 14years at various and much higher doses. A test should I don't produce enough cortisol because of long term steroid use so I am on 5mg for life sadly. Still they helped save my life 😊
Hi Ludo, thanks for your reply, I posted that question about 6 years ago so not sure how it resurfaced. However, interesting what you were saying about your cortisol levels, I am having an appointment with a endocrinologist soon as I suspect I no longer produce enough cortisol. Never ending isn't it, the constant issues...
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