Mycophenolate mofetil, poss side effe... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Mycophenolate mofetil, poss side effects.

newbe
newbe

Hi everyone,

I have limited system sclerosis with raynauds and slight sjogrens symptoms, dry mouth mainly. I have just had the results from a ct scan on my lungs which show mild fibrosis on the base of my lungs and I also have fluid around my heart. I am a bit anxious and they have prescribed mycophenolate mofetil and just wondered if anyone can let me know how they reacted to this drug. I also have an ileostomy due to ulcerative colitis but generally feel quite well.

Thanks.

Debbie

13 Replies
oldestnewest

I have had Mycophenolate since 2011 and the only side effect that I noticed is that I was extra tired. Over the years it has been reduced and with luck in 2 years from now I will be able to stop taking it.

Everyone is different, you cannot know until you have tried it. I hope it works for you.

newbe
newbe in reply to Irene55

Thanks for replying, I guess I'll have to just take the pills and see what happens!

Like you said our bodies all respond differently.

I've been on mycophenolate motil for nearly a year now and no side effects that I notice, although I know my blood profiles have changed but that is normal

newbe
newbe in reply to cowhide

Thanks for your reply. Started taking the tablets today so I'll just have to see what happens. I have made appointments to have my blood checked.

Deb

Hidden
Hidden in reply to newbe

I have a system wide Sjögren's, previously diagnosed with RA, and have secondary Raynauds and possible Scleroderma.

I've been taking Mycophenolate for 4 months having tried 4 other antirheumatic drugs with terrible side effects, including Anaphylaxis and Pancreatitis. I find Mycophenolate easy to tolerate and I'm well moniltored. Not sure of not how well it's working yet - appointment to review with nailfold capilliary test later this month.

Best of luck.

newbe
newbe in reply to Hidden

Thanks twitchytoes (love the name by the way!), I had a bad stomach yesterday but put it down to my body adjusting to yet another drug so I'll keep my fingers crossed.

Deb

mad4cavs
mad4cavs in reply to Hidden

What's a nail fold capillary test

Hidden
Hidden in reply to mad4cavs

An examination of the tiny capillaries at the base of the nailbed. They drop some oil on and examine using a light and magnification. They use it to tell whether Raynauds is primary (normal capilliaries) or secondary to a rheumatic disease.

mad4cavs
mad4cavs in reply to Hidden

Thank you xx

I've been taking it for 2.5 years along with hydroxichloroquin, with some very positive benifits, reduced body swelling, muscle aches have gone, swollen face with red rash is no more. Deteriation in my lung function is halted and stable. No noticeable side affects although I do need amaprasol for the digestive system. The tiredness I understand is, in my case, is more to do with the Scleroderma as I had it before taking any medication. Hope it works as well for you.

newbe
newbe in reply to HerefordBear

So glad to here it has helped you. Thanks for your good wishes.

Deb

Hello. Just read your post, albeit late! I have suffered scleroderma/raynauds since 1989 and took no medication because of the side effects. Not much was known back then about the condition. It became diffused in early 2009 and in May 2010 I suffered a necrotised colon/large intestine and was was extremely lucky to survive. I too have an ileostomy as a result but it was caused by my scleroderma. After a month in hospital I was given an 'M.O.T' and prescribed Mycophenolate at maximum dose to suppress my immune system. I have taken it for seven years now and have had no side effects whatsoever. I am on such a lot of medication that I attribute my tiredness to a combination of everything! Good luck and keep a positive attitude. Kim

newbe
newbe in reply to kimmo

Thanks Kim, at the moment I feel wiped out but I think that is a combination of drugs and scleroderma. Like you I have had a few scary moments with my small bowel. In 2015 I got severely dehydrated and I'm sure you know how careful you need to be with an ileostomy. Anyhow my kidneys didn't play ball for 2 days and they threatened dialysis,thankfully they recovered in the nick of time and I was fed through my vein. It's amazing how I recovered and the one good thing is that it makes me appreciate every day and I pack in as much as my body allows me to. Thanks for taking the time to reply and good wishes to you.

Debbie

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