Mycophenolate

[Barbs51]

Hi all, I would like to know if anyone has had any experience of Mycophenolate? Had a Rheumy app today and this drug has been decided on the follow up to Cyclophosphamide infusions for ILD. I also have RA and Sjogrens. Any information on taking this drug would be helpful. Many thanks 🙂

[helixhelix]

There's at least one member who uses it, twitchytoes. Sjorgens is her primary autoimmune disease too. Hopefully she'll pop by with her experience.

[Barbs51 in reply to helixhelix]

Thank you for your reply, hopefully twitchytoes will be in touch 🌺

[Hidden in reply to Barbs51]

Just seen this post. Yes as Helix says I take Mycophenolate. There are quite a few of us on Lupus UK HU and also the Scleroderma & Raynauds HU and Vasculitis UK who take it to good effect.

I have found it to be extremely tolerable even after 7 months and as someone who has failed to tolerate 4 other DMARDs - and am to rise to 3000mg (the max dose) shortly.

In my case I'm taking it for the small fibre and autonomic neuropathy/ dysfunction of Sjögren's - and to hopefully prevent progressive organ involvement - mostly small vessel disease of my brain (apparently a Sjögren's thing). Although my inflammation markers are still fairly elevated and the neuropathy still flares intermittently I've found that my balance has improved greatly, the fatigue has lessened and my eyes are less dry. I'm also trying the AIP diet after a spate of nasty ENT and parotid infections - and this seems to be working well for me too. My sister has just been staying and had last seen me prior to starting the Mycophenolate and she says I am looking and walking so much better.

It isn't a drug that is used for RA because it doesn't target synovitis but I haven't had a return of my RA type symptoms for at least six months now. I do hope this helps.

[Barbs51 in reply to Hidden]

Hi, thank you so much for replying it helps me a lot. I'm being prescribed this drug for my inflammation of my lungs which is secondary to my sjogrens and it is a follow up to my cyclophosphamide chemo infusions. I was a bit alarmed when my consultant said I would be 'counselled' before I start the treatment. Did you have this? Anyway I'm just happy to be given medicine to help me through it all in a bizarre way. Thank you again and I wish you all the best for continued well being. 😊💐

[Hidden in reply to Barbs51]

You are most welcome. No I wasn't counselled ? I had previously tried Sulfasalazine, Methotrexate, Hydroxichloraquine and Azathioprine over a five year period. I'm not aware that Mycophenolate is any more heavy duty than these others. But, in common with all immunesupressants, you will need frequent blood monitoring. Mine was weekly at first as I moved up the doses. Perhaps this is what was meant by counselling?

Best of luck - I do really hope it helps your lungs.