Anyone have granulomatosis with polyangiitis (GPA) or Wegener's?

Posted by suska @suska, Sep 15, 2017

Just diagnosed in May, 2017. On a maintenance dose of 12.5 mg. per week of methotrexate Tapering off prednisone since May also-2.5 mg every other day for 1 more week. Was feeling fine until @ two weeks ago with starting the maintenance dose of methotrexate. For two-plus days I have side effects of extreme fatigue and tiredness and some gastrointestinal problems. Also, some insomnia. Is this normal for methotrexate? Could the symptoms be related to the steroid tapering? Thank you for considering this.

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gently | @gently | Mar 27 1:02pm

In reply to @becsbuddy "@holland13 Welcome to Mayo Clinic Connect! I’m glad you found us. I, also, had a problem..." + (show)

becsbuddy, this answer is perfect. And you figured this out about Rituxan on your own. I'm impressed.

Becky, Volunteer Mentor | @becsbuddy | Mar 27 1:40pm

In reply to @gently "becsbuddy, this answer is perfect. And you figured this out about Rituxan on your own. I'm..." + (show)

@gently Well, it all comes from experience, I don’t do well on meds (drugs). And I’m a nurse who’s been retired for too long. I’m just glad you put the article in!!

pm56 | @pm56 | Mar 28 12:13pm

In reply to @holland13 "Since 3 years i have been diagnosed with Wegener desease it make me ill i had..." + (show)

I tried Rituximab last year and although it didn't work well for me, I remember getting a horse dose of prednisone (about 100mg if I recall correctly) right beforehand to lessen the chances of a reaction and then the Rituxan was infused very slowly over 6 hours. I didn't have any issues with it during or after the infusion. Maybe the protocols have changed since you last had it?

Becky, Volunteer Mentor | @becsbuddy | Mar 28 2:16pm

In reply to @pm56 "I tried Rituximab last year and although it didn't work well for me, I remember getting..." + (show)

@pm56 I’m sorry that it didn’t work so well for you. I don’t think there were any changes in the protocol, but I’d have to ask . Was last year’s dose the only one you received? I have received 3 doses so far, and each time i just pray like that it will work!
What other options has your doctor brought up?

pm56 | @pm56 | Mar 28 3:01pm

In reply to @becsbuddy "@pm56 I’m sorry that it didn’t work so well for you. I don’t think there were..." + (show)

I received the first one with a second one about 2 weeks later. Then it was supposed to be another one in 6 months. I tried weaning from the steroids after month 4 and my symptoms returned, and I had to go back on the steroid to control the flare and haven’t managed to get off them yet (another trial wean that started in January on Cosentyx very badly this time - less pain so it is doing better than any of the biologics to date, but significantly more weakness).

My rheumatologist has me seeing a neurologist just to ensure there’s nothing else going on and then we’ll reassess and hopefully add something to the Cosentyx and Methotrexate to see if I can lower the Medrol dose. It’s frustrating as the Medrol destroyed my corneas, and I see my blood sugar rising with each visit 🙁

kg | @khosini | Apr 18 12:34pm

How does one deal with the red rash caused by granulomatosis GPA. Any lotion to recommend?

paulinybeany | @paulinybeany | Apr 19 12:50pm

In reply to @khosini "How does one deal with the red rash caused by granulomatosis GPA. Any lotion to recommend?" + (show)

I have had this condition for over 20 years. I was prescribed an ointment which did not work. I can tell you though my rashes have almost disappeared as I got older. Now I have developed vitiligo. I was grateful that the granuloma annulare did not itch or cause pain. Knowing that I was not the only one with this condition helped me to accept it. Best of luck to you.