mycophenolate

[flamgirl]

hello

I have just joined this network and am looking for any information on the drug mycophenolate.

I have systemic scleroderma which is affecting my lungs and my consultants are considering putting me on mycophenolate as my condition has worsened.

I would be grateful if there is anyone in the group who has or is on this drug and how it has affected them. There are a couple of side effects which sound slightly concerning but any feedback would be welcome.

[Lou1936]

I have been on mycophenolate for several years. I have not had any problems.

Good luck!

BTW, I just found out, 3 days ago that I have Congestive heart failure. Wondering if anyone out there may have likewise been diagnosed and if there’s any connection between the two.

[Coldhands65 in reply to Lou1936]

Hi. I've been on mycophenolate for years and just found out i have high pressure on left side of heart hearing what you've just said is now making me wonder if it's connected. Is there any way of knowing for sure. I get lots of chest infections due to the low immunity with mycophenolate.

[cheeselover342]

Hi there! I have been on Mycophenolate for 5 years will no side effects so far (cross fingers!) I have regular blood tests (every 3 months) and annual lung function tests and echocardiograms. If you are on this medication you should have the same. I think it is tolerated by most (but not all) people quite well, so worth trying. It takes about 3 months to kick in by the way and you should be advised to stop taking it if you are ill (flu, Covid, tummy upsets etc.). Best wishes.

[OldTed60]

I’ve been taking Mycophenolate for 4 and half years and it’s been a positive game changer for me. I have no heart of lung involvement yet but my gut is severely involved. This means I’m not getting so much from it now since stoma surgery in June, so I’m also newly getting Rituximab infusions as well. Due to having been misdiagnosed with other rheumatic autoimmune diseases in the past I’ve tried 4 others but not tolerated any but have tolerated mycophenolate perfectly well.

[Clangerscat]

Hi flamgirl, welcome to the group. The side effects of Mycophenolate look awfully daunting don’t they but your doctor will monitor you regularly to make sure you are okay so don’t worry. It will hopefully stop the disease from progressing. I was only on it for about 6 months and was fine at first then started getting painful acne like spots on my face which my rheumatologist thought it might be a side effect so took me off it. In some ways I wish I was still on it as it gives you that reassurance that the disease is slowed, I am however fine so take it all as it comes. Hope this helps. Take care.

[Jmrose]

I have been on mycophenolate since I was diagnosed in 2016. For me it's a game changer...my scleroderma has not processed since then. I am also taking nifedipine and hydroxychlorauine. Will be taking for the rest of my life because it works for me. Good luck

[flamgirl]

thanks everyone for your replies which are very helpful and it’s reassuring to know that I’m not on my own. Having this condition can be lonely and worrying as there is no known complete cure, so thanks for getting back to me. I am thinking I will give the drug a go and let’s hope for the best! Take care everyone.

[Pomoc]

Welcome to the forum and I wish you well, my wife has the same. The mycophenolate DID seem to halt the progress of lung disease as since she has been on it for 6 months we were happy to report no further lung damage. Yes, the side FX are quite strong for her but not for everyone by any means. She has insomnia/sleeplessness (never had it in her life before), itchy skin, some other effects too. Watch out for constipation which can be v serious with scleroderma, so monitor for that. Her lung consultant said wasn't related to mycophen but it's there on the lists of side FX and the pharmacist said it was a factor.

[Lupiknits]

I’m another person who takes mycophenolate. I don’t have any side effects. The only concern I had initially was that it dampens the immune system but being careful about that is much easier than systemic sclerosis itself. Welcome to the gang! It’s a bit lonely having a rare condition but this forum is very helpful x

[Redwine53]

I am on mycophenolate too, and have been since 2019, when I was first diagnosed, I am sure it has slowed everything down, though I think I am heading for pulmonary hypertension, with a leaky heart valve!

MMF is great for lungs according to people on the myositis site.