New drug Myfenax

[stepel11]

Hi Folks, this is my 1st post, I was diagnosed with GCA in October and I am down to 20 mg pred but my Rheumy has also has me on Myfenax (Mycophenolate mofetil). I haven't seen anything on this site about it, is anyone else on it and does anyone know anything about it. Thx SC

[polkadotcom]

Hi, stepel11 and welcome.

I hadn't come across the name before, so had to check. It's the generic of CellCept (the brand name for mycophenolate) and while I've had no personal use of it, I do know it has been used for others as a steroid-sparing agent.

Hopefully someone will come along with more information soon.

[PMRpro Ambassador]

You haven't seen anything here because it is rarely used in GCA although it is used for other forms of vasculitis. Pred is the go-to because it is the gold standard and works quickly and reliably - which is essential in GCA if people have visual symptoms, you can't experiment.

As polkadotcom, there are a few rheumatologists who use it as a so-called steroid-sparer but I have no idea whether it works or not. There have been no controlled studies done with it so it isn't included in the guidelines.

[11caroline29]

Hi. I also have Gca and Pmr. I tried Mycophenolate for 12 months with no success. I had to have pneumonia vaccine before starting and weekly blood tests. It can weaken your immune system and I got shingles. My Neurologist put me on it and my Rheumatologist suggested I come off it. It's supposed to help you reduce steroids but is no replacement for steroids in treatment of GCA. Hopefully it will be more successful for you.

[altywhite]

Hi stepel11. Mycophenolate is an immunosuppressant, other name is Cellcept. We used it on our transplant patients to help prevent rejection. It is similar to Azathioprine so I am assuming your rheumy has put you on it as a disease modifying drug...to try and help reduce your steroid dose. The list of side effects is almost as long as steroids. I don't think I would be happy taking it but that is only my opinion. If it works for you and you don't get any side effects then that would be great. If you're worried about it maybe discuss at your clinic appointment.

[suzy1959]

I am on Mycophenolate and have been since October. It is the third DMARD I have been put on (after Methotrexate and Leflunomide). I don't think it is working and neither have the other two. This time it is my desperation to try anything to help me reduce the Pred. after 4 years on 10mgs. or more, but you haven't been on Pred. that long, so may not need to try a DMARD at all. The trouble I have found is that Rheumy's seem so desperate to get us off the Pred. that they put us on all sorts of nasty drugs in the hope they will help and yet that is entirely hit and miss anyway.

[PMRpro Ambassador in reply to suzy1959]

I was on 10mg + for the first 3+ years (of pred that is, not PMR). Then I had to switch to Medrol - and after a few months even 20mg didn't help significantly. I was switched to prednisone and the 15mg miracle happened, it took me a good 7 months to get down to 10mg. A year ago after being at 5mg, I had a flare - back to 15mg and just managing now on 8mg. I've spent a long time at above 10mg. But here, no-one really gets in a tizwas about it - they take the attitude you need what you need and if you can get to 8mg that is great but won't have a fit about it.

There is a group in Genoa (if I remember rightly) who found that the patients on methotrexate were able to get to a lower dose. But 5 years later their pred-related side effects were no different from those of the control group. And i/3 of patients were still on pred after 6 years. My consultant here thinks the senior guy there, Salvarini, is the "godfather of PMR". I assume that is why they are so relaxed here.

[stepel11]

Thank you everyone for your replies, I will discuss with my Rheumy at my spot in 2 weeks, I'm not sure it's a drug I want to be on!