Husband has wegeners

[Victoria]

New to this forum. Found it looking for info on wg. Have any of you ever been treated for wg with the drug myfortic? If so, with what results? Husband is 65. Has been managing his disease since 1985. First with cytoxin, then methotrexate, and myfortic since his last relapse in 2007. Just this week has had another flare. Doc started him on prednisone 80 mg. This is the highest dose of pred he's ever started with. In reading all the posts, I haven't run across any talk of this myfortic drug. If anyone has any experiences with it we would appreciate your input.

[Jack]

Hi and welcome to the forum.

Yes, I've been on Myfortic since it was first being evaluated (about 20 years? can't remember now) and it stopped all the flare ups I was having when using Neoral. I am only taking 360 mg twice per day which I believe is a very low dose. In addition I take 10 mg of Prednisolone and a whole load of other stuff.

In the past when I have had a flare, my Pred was increased to around 50 mg, but I started out on 1g I.V. when first diagnosed.

[Sangye]

Hi, nice to meet you Victoria. I was on Cellcept (basically the same as myfortic) for 2 years. My Wegs was not in remission or well-controlled when I went on it, so it kept it at a smoldering level. I had a severe flare last summer despite being on 2,000 mg per day. I tolerated the drug well, though. Gave me daily diarrhea and occasional heartburn but that's about it.

[Victoria]

Thank you guys for input. My husband goes to kidney specialist this week and we were just trying to get info on myfortic to get our questions ready for him. From actual users other than just the doctor. He stayed on methotrexate 13 years before a flare and was changed to myfortic. Was disappointing that a flare came after just 3 years of this. He takes 1400 mg myfortic daily. Since the pred has been increased to 80 mg daily, the nervous jitters and hyper have set in!

[Col 23]

Hi Victoria
When I was first diagnosed I was on 80 mg of Pred and couldnt sleep for days, became totally obessive compulsive, yelled at my husband, cried and had terrible meltdowns in shopping centres. I talked a million miles an hour and would get upset over very trivial things. You might get lots of jobs done around the house. I cleaned out nearly every cupboard in the house. Best of luck with everything.
Col 23

[Victoria]

I totally agree. My husband really is a trooper, as he is the weg patient, not me. I feel for everyone. What other meds are you taking?

[elephant]

Victoria I am on cellcept myfortic ..I take 2000mg and it put me in remission. Hopefully forever. Hope it works for your husband.