mycophenolate

[naila_007]

Hey all,

Any one on mycophenolate?

Just wondering how everyone getting on with mycophenolate - i have been on it for 4 months now and have seen lots of skin improvement - but hands and fingers are still tight - oh and my knees - Am assuming it will take more time. I am on a dose of 2000mg. The only negative is sleep disturbance.

anyone else?

regards,

Naila

[Wengc]

Hi...I'm on it, like you improved skin, raynaulds a bit improved, heart and lung function tests stable - no change from last year. And yes, I've had disturbed sleep ever since I started it. Rheumatologist says it doesn't cause this but I can't think of any other reason for it. My joints are a bit better and I have made myself start yoga and now some light strength training with a physio.... I'm on 1500mg plus hydroxychloroquine. I hope you continue to feel better,it's taken me about 8 months to get here.

[Irene55]

I have been on Mycophenolate since April 2011 and the doctor has been reducing it year by year. With any luck in 2 years from now I will be off it completely. It helped me a lot and I haven't had side effects except more tiredness sometimes. I have also had sleep disturbance since then and didn't put it down to the Mycophenolate but maybe it is.

[marilynmcl]

Have been on myco. for 2 years now....further lung damage seems to have been stemmed. Joints are still swollen and painful....still choking on thick flem. So, the only noticeable difference has been on the lungs. Sleep disturbance also. Maybe a survey could be done about that to see how many of us on myco. have similar experience on the sleep disturbance.

[Alice1956]

I have been on 2000mg for 6 months. I do see some skin softening in my face /neck and slight softening on some areas of my arms. I do free that it is working for me but still am tight on my back legs arms and hands. I am happy to give it more time to continue the improvement. Alice

[LilaJoe in reply to Alice1956]

Good to hear it works!

Anyone with diffuse who has had it? It seems to be a bit of a juggle between the various medications.,.

[treesie]

I have been off and on it for 3 months, I keep getting infections and have to go off. I don't have any sleep disturbances, but my immunity is so bad I keep getting sick. Wish I could stay on it for a long time as my lungs are seriously compromised.

[naila_007]

Hi Everyone,

Thanks for your replies.

I had a consultant appointment Tuesday just gone and he suggested i take my 2nd dose earlier. I was taking it at 9.30pm so last few days been taking around 8pm.

[Wengc]

That's interesting Naila, I take my last one quite late as well...I'll start to take it earlier and see what happens.....fingers crossed!

[cowhide]

No sleep disturbance here - been on myco for over a year now, 4 x 500mg. I take 2 at about 6.30 am with 25mg sildenafil and 30mg lansoprazole, then same dose all round again at about 4pm. I try and take these on an empty stomach. I have ferrous fumerate mid morning and then last thing at night I have losartan 30mg, my last sildenafil and another iron tablet. Vit D sometime in the day with food. But goodness me it throws me out if I am away from my normal meal routine! I would say the myco has definitely helped reduce skin tightening (and hopefully internal collagen as well) and the sildenafil has certainly helped with Raynauds and ulcers.

[naila_007]

Hi All,

just wanted to feedback - since i started taking my dose between 6.30pm and 7pm - the sleep disturbance has reduced. Now i get up a couple of times.

Next step to try and bend to pick up stuff off the floor and squat - slowly but surely will get there - cant let this beat us!

[Sarog72]

Yea me 2 been on it about 7 years doing ok x