Advice

[kel87]

Hey

I`ve got my official letter from my consultant she is wanting to try me with Immunosuppressive Therapy and I`m presuming the medication is Mycophenolate 500mg twice a day. Has anyone else been on this is it prep for Transplant? This is the first I`ve heard of this and panicked a little bit.

Thanks

Kelsey

[Bean82]

Hi! Yes I've been taking 2 mycophenolate tablets each morning and each day fending since February time. Not noticed any side effects or improvements but I think the idea is that it slows things down rather than fixes. I forgot to ask the consultant on my last visit about how long they need to be taken for but I get the feeling it's long term tablet taking, rather than a short term fix.

Have you read this:

arthritisresearchuk.org/art...

Good luck

Kellie

[Maryjcl]

Hi Kelsey, I've been taking it for nearly 2 month now and have a vast improvement in my skin and also feel better in myself so don't be nervous, try it and good luck. Mary

[JayneO]

Iv been taking it for eighteen months now, and yes I have benefited from it. Generally feel better in myself and my skin is not so tight. I came off it for a month in January to go on a trial, and I soon noticed a worsening of symptoms. But back on it now and feel better again. Jayne

[cowhide]

Hi Kelsey, I have been on myco (4 x 500g/day) for 9 months now. It is used for transplants because it suppresses the immune system and possibilities of organ rejection. But don't worry it is NOT because you are being lined up for a transplant. Some studies show that it helps to suppress the progession of scleroderma, skin thickening, lung fibrosis because it is damping down the immune response which is causing our bodies to produce more collagen. It is normal to start you on a low dose and gradually increase it to allow your body to get used to it and to monitor any side effects. You will be asked to go for frequent blood tests for the same reason and as it is a powerful drug it is important that you read and abide by instructions in any literature you are given. It takes several months before any benefits are noticed. I have no side effects from it at all and I do believe it has reduced my skin tightness.

[Thinman]

I've been taking mycophenolate for three years. Initially my dose was 3 500mg tablets twice a day. My specialist has slowly weaned me down to 2 tabs at night and one during the day. The only times I've had to stop taking it is when I've come down with a bad cold or flu. It may exacerbate reflux if you have it. Otherwise no issues while on it.

[kel87]

Thank you everyone xx