Query re Mycophenolate

[Gosingen]

I would be very interested to hear from any of you folks here on the forum if you have been treated with Mycophenolate for PMR/GCA? If so did it work in weaning you off prednisoline or reduce to an "acceptable" level?

Any info you may have will be of interest for me as I have been asked by my new rheumatologist to try this DMARD. What I'vre read so far is a little bit alarming, and as I've not had any luck with MTX, Hydroxychloroquine nor Lef; couldn't try Azathioprine I am trying to do as much research as possible before my appointment with the hospital end of April in order to make my mind up regarding this.

Thank you in advance.

[HeronNS]

This thread might interest you:

patient.info/forums/discuss...

Read the post from Eileen partway down the thread.

[Gosingen in reply to HeronNS]

Thank you so much HeronNS for this link, most useful.

[suzy1959]

Hi Gosingen, I have tried Mycophenelate- was on it from October-March with no obvious success, so I have now stopped it. Didn't have any untoward side-effects. I knew it was a long shot that there would be any benefit but I was feeling like trying anything as my PMR does not seem to know that after 5 years, it is supposed to be calming down a bit!

[Gosingen in reply to suzy1959]

Hi suzy1959 and thank you for your reply. I know what you mean about our PMR not knowing it's supposed to calm down... I'm now on year 8 for my PMR and year 4 for the GCA, never been below 8mg and all it's consequences. I don't think this is a route I will go down, hence the question. Again thanks for your reply and I am not surprised it didn't do anything for you. One day maybe we will better understand how to treat our illnesses.

[PMRpro Ambassador]

What dose of pred are you on at present?

Mycophenolate is used in other forms of vasculitis - but is very rarely used in PMR/GCA. It doesn't even merit a mention in the guidelines. And frankly - if you had no success with the others, what makes him think this might make a difference? I do get annoyed when they try experiments outside the realms of proper trials. In trials the patients are kept far better informed (the ethical committee makes sure of that) and under observation. I wouldn't mind - but it is next to impossible to get hold of anyone when something goes pear-shaped and GPs are next to useless anyway in this respect.