Mycophenolate and remission

[friz42]

I have recently been prescribed Mycophenolate as part of my treatment. I read that with others drugs are used to induce remission. I have not been offered alternatives despite this being the second time using this drug. I have used it previously and found no benefit in it, I realise it takes a long time to get into the system. i then went on to have a bowel perforation. I am currently on 15 mg of prednisolone and 2 x 500 mg of mycophenolate. I am so concerned that damage is ongoing whilst I wait for this drug to work or not. I have many symptons and know this disease is very active. I have more contact with the rheumatologist nurse and GP re managemnet of this than the consultant. ( I know they have limited knowledge re this though) I am Anca positive. I have been discharged from Vascuiltis team at Addenbrookes due to the thought I am being managed effectively.

Can Mycophenolate induce remission? and at what point do they decide whether it is working or not?

Thank you .

[Chris-Bromsgrove]

Hi friz42,

If you have been seeing the Addenbrookes Vasculitis team then they should know what they are on about. Mycophenolate is taken to maintain remission, not induce it. If you have ANCA associated vasculitis you would normally start with stronger drugs such a Cyclophosphamide or Rituximab to induce remission. I have been taking Mycophenolate for five years now to maintain remission and so far it has worked. My dose is 2 x 500 mg twice daily. If you feel you are still getting symptoms of vasculitis then I would try to get referred back to Addenbrookes.

[Lone-wolf]

Hello friz42,

I am also on Mycophenolate, 2 times 500 twice daily for the past five years. It is to maintain remission. I have reduced Prednisalone to 5mg daily but feel due to ongoing domestic pressures that this should be maintained as such for the time being. My consultants tend to agree on this. As to reducing the dosage of Mycophenolate, I would rely on my consultants, who are best of all knowledgeable as to when to reduce the dosage. If you are concerned as to your ongoing symptoms do contact your consultant to discuss. They are quite open for discussion with patients.

[Barnclown]

Hello friz...a few questions + a bit of background. Am v glad you posted

so, when rheumatology vasculitis team discharged you, did they asign your ongoing monitoring & care to your GP alone? So, that you are not being monitored by any hospital clinic at all?

My primary is infant onset systemic lupus, and i take 1000mg myco & pred daily in my oral combined therapy treatment plan, and, so far myco helps me lots. I am 64 and regularly monitored by several multisystem hospital clinics indefinitely including gastroenterology due to intestinal insufficiency segueing into intestinal failure (intestinal pseudo obstruction) , caused by my underlying immune dysfunction & conn3ctive tissue disorders including secondary small vessel vasculitis.

My husband has early onset crohns, and although i am very very happy with all my clinics’ care, i do feel alert to my risk of bowel perforation. Has the NHS attributed your perforation to vasculitis?

I’m mainly in care at addenbrookes...i am sero neg but my immunology chief says this is down to my early onset (prior to treatment with immunosuppression meds) PID hypogammaglobulinaemua G,A,M bone marrow dysfunction. only my cornea specialist is at our smaller local nhs hospital

🍀🍀🍀🍀 coco

[tisme2]

Hi friz42. I too was never prescribed rituximab or similar to induce remission but was initially prescribed azathioprine but this made me violently sick straight away so I have now been taking mycophenolate for two years one month. There are no "specialists" on vasculitis near me but I do get regular appointments with Rheumatologist and her nurse, who doles out my tablets, I am also under Nephrologist as I now have kidney damage, all monitoring my bloods every visit. I too take 500mg MMF morning and again evening with blood pressure tabs. I was on 20mg steroids for the first year but then i asked if I could reduce, which was approved and have been off them altogether now for a year. I had an appointment with the Nephrologist last week who have now said that he intends to discuss my case with the other docs with a view to start reducing my MMF, and providing no flairs will eventually stop them too. My GP has told me that he has no experience in treating vasculitis at all. I have wegeners, anca positive. I believe that MMF worked for me as I now feel that I am in remission. So Friz, hope my story will give you some confidence in what your docs have prescribed for you but make sure that you get regular check up appointments off them and blood tests every visit to monitor your situation, don't accept anything less! and persist with your questions about your blood test results, I do, I take a pen and piece of paper with me on my appointments and I ask for every result and make a note of it in front of the doc. Addenbrookes I hear are the best so we have to put our trust in the docs we see!

All the best Friz and keep in touch with this forum and let us know how your doing, great advice on here and I have found some comfort too.