Mycophenolate

[GlastoGal]

Anyone on Mycophenolate?

Do you still get ulcers?

My main issue is joint pain and fatigue with oral/genital ulcers approximately every 3 months.

I’ve been trying to get an ulcer biopsied to either confirm or rule out BD however twice this year the clinic could not accommodate me to have the biopsy carried out which has been really frustrating.

I’m about to commence Mycophenolate as I need to get off oral steroids which I’ve been on for a year now. (Azathioprine did not agree with me).

Does Mycophenolate reduce ulcers? - I’m wondering should I delay commencing the drug to try a get another opportunity for a biopsy.

[jaynee63]

Hello I’ve been taking mycophenalate for a long time now for precisely the same reason, Azathioprine just wasn’t working for me. I now only get ulcers once or twice a year, it was constant beforehand. I still suffer with fatigue and have joint flares but literally nothing by comparison, and I’ve found when I do have a ‘flare’ that it’s duration is just a couple of days rather than a week.

[gillianTS in reply to jaynee63]

Hi Jaynee63

Do you feel that your joint pain is relieved more with mycophenolate than Azathioprine? Only I take Azathioprine and seen no reduction in joint pain or fatigue. I have seen a reduction in ulcers but some oral ones tend to be smaller but deeper set, flares can last as long.

I am with my consultant on Tuesday and keep wondering if I should ask to try something else, do mycophenolate work in the same way as Azathioprine?

Thanks, Gillian

[jaynee63 in reply to gillianTS]

Hi Gillian

For me the mycophenalate works very well, and I only have joint pain during flares now. The azathioprine stopped working for me. I think the thing to remember is that everyone is different, my consultant knew me well and what would work for me.

[gillianTS]

I have not taken mycophenolate but not sure if I would wait to start it if my ulcers were so sore and usually people are not fully cured normally a reduction in frequency or size or both I believe when taking such medications. I take Azathioprine and have seen a reduction in frequency and size of ulcers but some mouth ulcers are now deep set and smaller. It has not got rid of my joint pain, tight muscles or fatigue, still working on trying to find something to help with these things too.

Good luck when you decide to start the mycophenolate I hope you get relief from your symptoms.

Gillian

[Miataman]

I've been on mycophenolate for about 5 years. I started on 2g daily and am now on 1g daily. I still get a few ulcers from time to time but they never really get bad. I have zero joint pain now. I also get what I think is BD headaches from time to time but they are short lived. I was concerned about taking mycophenolate but so far I can't find any long term studies on it. So I am unaware of long term risk.

All in all, it gave me my life back. I can now do anything I want. I'm active and thriving. It did make my stomach upset the first week on it and anytime I change my dose it does it again. The drug is slow acting so expect a month or so before it does anything for you. I hope that helps.

[GlastoGal in reply to Miataman]

Thank you so much! This is very promising.