First timer. Anyone taking Mychophenolate

Hello all. Have been getting the benefit reading all the posts from all you lovely fellow sufferers but have been reluctant for no real reason to posts my own. So here goes.

Is anyone taking or any experience of Mychophenolate as a steroid sparing medication for GCA. I've been prescribed it as I need to reduce Pred as quickly as possible to be able to have an urgent heart operation. I'm reluctant to take it as it has so many listed side effects in the 'more than 1 in 10', a lot of which I already have. I've not been able to find much on web. There seems to have been some very small trials done. Today, my GP told my they don't or can't prescribe it and they don't have any patients who take it, so appears to be not widely used other than in hospitals for heart/lung transplants. Any feedback would be very much appreciated.

[PMRpro Ambassador]

If you correct the spelling to mycophenolate, take out the first "h", in the title you should find that the Related Posts bring up some suggestions. It is not a drug that is routinely used in PMR/GCA and nothing is going to achieve a very fast reduction without a return of symptoms, not even tocilizumab which will certainly get you off pred but even so it will take a few months. If it is only for a short time/a relatively small reduction, I'm surprised they haven't considered tocilizumab since it is approved for GCA.

I imagine the mycophenolate is like many such so-called steroid sparers which must be initiated by the specialist although the GP deals with the ongoing prescriptions. Who is it who has suggested mycophenolate? - sorry, just seen in the bio on your profile it was the rheumy. What a strange choice, I can only think that the rheumy isn't very experienced.

And since I forgot at the start - Hi, and welcome!!

[Hidden in reply to PMRpro]

Thankyou PMRpro and hello to you. I have no confidence in my Rheumy, It is with all the knowledgeable advice on here from yourself and others that has helped to guide me so far and for which I thank you all. I've asked to change the Rheumy, getting nowhere so far, so will have to get assertive. Seems I've got to take a steroid sparer before tocilizumab will be available to me. I've not taken Methotrexate. Feel I'm in a dilemma which way to go. There is an urgency to have the heart op.

[PMRpro Ambassador in reply to Hidden]

Hum - I suspect with the heart op urgency, it should save the step of the steroid sparer. What hospital are you under? Is it a decent one or just a regional hospital? I mean - there is next to no evidence that myco will achieve a lot.

[Hidden in reply to PMRpro]

It's a large local hospital. Not sure how decent it is. I know there are several other rheumy's there which I've heard no complaints about. The problem is getting to speak to someone in rheumatology. The dept seems to be particularly affected by the staff shortages in the NHS and if I leave a message, I only ever get a reply from a secretary or nurse. That's a very good suggestion to see if I can go straight on to Toc without the steroid sparer. Thankyou for that. My next appointment is on 29th March. I'm hoping I'd have changed Rheumy before then.

[PMRpro Ambassador in reply to Hidden]

Rheumatology in some places has been abysmal for a few years. It seems a sort of marmite situation - either very good or very bad!

[Hidden in reply to PMRpro]

Contacted PALS this morning. Then surprise surprise had a phone call from the operational manager for Rheumatology. Explained all my issues. It's not going to be easy to switch Rheumy's. There is only one other who is full time. One is off long term sick and there is one locum who she says won't give continuity of care. So she's going to speak to my Rheumy about my concerns and also get the other one to review my case. So some joy I think.

[PMRpro Ambassador in reply to Hidden]

What hospital is it?

[Hidden in reply to PMRpro]

Worthing in Sussex.

[PMRpro Ambassador in reply to Hidden]

Fingers crossed

[Kafkaontheshore]

Hi. I take Mycophenolate. I had been on Tocilizumab and Methotrexate for large vessel vasculitis and got off pred then had two flares. I didn’t think Methotrexate did anything for me so rheumy switched me to Mycophenolate and I titrated dose to 1g twice daily. I keep an eye on liver and kidney function which has been fine. Have an infection currently as immunosuppressed. Also on another biologic so that doesn’t help in terms of vulnerability to infections. I am slowly reducing Pred again. Down to 6mg this week so will see how it goes. Good luck to you

[Hidden in reply to Kafkaontheshore]

Thankyou Kafkaotheshore. 1mg seems very low but if it's doing the job for you then that's great. My Rheumy has prescribed 250mg. Sounds like you've been a long term sufferer and things are going in the right direction for. Do hope that continues. I also have an infection at the moment. A cold and cough and very short of breath and partly why I haven't taken myco.

[Kafkaontheshore in reply to Hidden]

I’m taking 1 gram or 1,000mg twice a day. Thanks for your good wishes. It’s difficult knowing what to do for the best but I got a second opinion at a London hospital which is always an option. Good luck to you 👍

[Hidden in reply to Kafkaontheshore]

Ah 1gram. Sorry should have realised they don't come in 1 mg sizes. The usual brain fog.im trying to get a second opinion and believe I've got somewhere with that today.

[Kafkaontheshore in reply to Hidden]

👍