Anyone tried Cellcept ( Mykofenolatmofetil ) ?

Swedish, 60. I have had PMR/GCA for about 5 years. It has been a struggle almost every day Three years ago I tried Methotrexate for six weeks. Terrible. Then I tried Azatioprin för about 10 days and had to stop. Now I have a new rheumatologist and he suggested I should try Cellcept.

When I read what you wright PMRpro I understand that I have reducing Prednisolon to fast from the beginning. I started at 50 mg. It took me four years to come below ten . Now I take 8,75 mg since november but am very tired and have some pain. Late summer I went down to 7,5 but nothing was good enough for my old doktor. He told me that my pain was something else and that I should enjoy life! Well, that was enough for me :-)

About Cellcept. I really don,t want to take it.If anyone of you have tried please tell me about it. Doktor said that if i does not work I should stay on 8,75 for a long time.

I am so happy about this list. It is not easy to wright in english but I read everything.

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  • Hello and welcome - no need to apologise for your English, it is perfectly understandable. I don't think many of the rest of us would want to write on a forum in another language! I speak fluent German but I hate committing myself to paper.

    I have not heard of Cellcept being used for PMR though I gather it is used in other vasculitides and a good effect is claimed. It is very unlikely it would be offered to people in the UK as it is rather more expensive than azathioprine! In your case - I suppose it would depend on side effects as I see it is considered worse in terms of gut effects than azathioprine (diarrhea) .

    I must say, I wish doctors would try reducing much more slowly before wanting to introduce other drugs. I have met a few people now whose doctors were in a panic about the rate of reduction and wanted to use steroid sparers with all the attendant possible side effects. The same patients got well below 10mg on their own by going very slowly - in far smaller steps than usually suggested by the doctors.

    There is another forum attached to the PMR and GCA northeast of England group where we have another Swedish member, Ragnar, who was the person who first thought about the very slow reduction and it worked for him. I wonder if you are anywhere near him - he would be pleased to talk to you I think and it would be a mini-Swedish support group! (Here is the link if you wanted to contact him via the forum: pmrandgca.forumup.co.uk/ )

  • Thankyou! I will try to find Ragnar. We have a small supportgroup on facebook- 12 ladies - and we all want to hear from someone who got well!

  • Ragnar founded a "Club Zero" group on the other forum to encourage people who had recovered and stopped taking pred to stay around to prove to people it is possible and does happen. So any of you who can read English can come and read stories from them. The parent northeast of England support group also has a website with a section with stories and experiences from other people who have recovered. Hope to see you there!

  • Must find Ragnar !

  • Hi AkselOlsen, Is cellcept a biologic? I have GCA and have been taking methylprednisolone for almost 2 years. I also take methetextrate by injection (10mgs) which seem to keep the inflammation down. I am interested in trying a biologic which blocks the killer t cells. I understand that it can affect your immunity, but I believe the medrol does that, also. If you try cellcept would you post your results? thank you. And I hope you feel better. all my best, Whittlesey U.S.

  • Hi Whittlesey. No Cellcept is not biologic. I really dont know what it is in english but its a lind you use after transplantations - immundämpande in swedish :-) If I try you will hear from me.

  • Aksel

    Ragnar's story is on pmr-gca-northeast.org.uk.

  • Thankyou!

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