GPA and RA or Fibromyalgia

I was diagnosed with C-Anca GPA in 2017. I went into remission in 2019. I was extremely sick for 4 months before being diagnosed and one of my symptoms was severe joint pain body wide. It caused kidney failure and I was on dialysis for about a year. My kidneys are now at 30%. Over the past 5 years, I have had more and more body aches. Of course I’m 71 years old and I know that doesn’t help but I feel like my symptoms go beyond the age factor. I haven’t seen a Rheumatologist yet because my Nephrologist is very knowledgeable about and is managing my GPA. I have read in different forums on here that if you have one autoimmune disease you will likely get others. I mentioned RA and Fibromyalgia in my title because I believe either of those could cause what I’m feeling. I’m asking if others here with GPA have experienced a similar situation.

[Nadine99]

My husband has had GPA since 2010, he's in clinical remission and has joint and body aches the whole time. Things sometimes get better, sometimes worse, all part and parcel of GPA

[Investigator1]

Hi LLWegeners. I was diagnosed with GPA in December 2019 and made clinical remission after 3 months even though it was “off the scale” to start with, I too am under a Nephrologist and wouldn’t swap her for the world. Body pains are part of the package with GPA as Nadine rightly points out,, it’s not so much about the current state of play but more about the damage already done and I have to say my joint pain is a lot worse and that is down to GPA damage and medications (Rituximab) and it’s a question of managing the gift that just keeps giving and that’s the bad news done. The good news in that you are in remission and have won your major battle, ready to take on the world and new adventures, don’t let anything stop you from doing what you want, be awkward and beat the odds because it makes a difference. Your only here once so when you feel poorly or in pain just look at the clock and tell yourself it will pass and get on with things. Your a winner. Nick.

[michichgo in reply to Investigator1]

Well said. Cheers and Merry Christmas!

[Mooka]

I’m sorry to hear about your pain. I’m also in remission and have a lot of aches and pains. I have spinal stenosis and have found out that a lot of pain etc that I thought was down to vasculitis is actually caused by my back problems. It maybe worth checking the side effects of any meds you’re on as these can cause pain. I would certainly mention this to your vasculitis doctor as they can do a blood test to check for RA. Sadly I don’t think there’s a definitive test for fibromyalgia, but I think fatigue is a symptom of fibromyalgia. I also have vitiligo, another autoimmune disease so yes it is common to have more than one. I would also think back to your original symptoms to check whether you are starting to flare.

[michichgo]

Hi LL,

I was diagnosed with MPA (GPA's cousin) in 2013 with the initial "red-flag" being my failing kidneys. I currently average 25-30% functionality, which serves me well enough and I'm thankful for that. I achieved remission at about 14 months.

Now, as to my overall physical well-being... By outward appearances, I seem healthy. But fatigue sets in rapidly, which amplifies issues with pain: sharp, dull, overall flu-ache. Take your pick, I get them all. I take mycophenolate sodium (I'm in the States) and my care is overseen by my nephrologist and rheumatologist. "Pushing" myself has not proven effective in my case; it significantly worsens my pain.

My advice to you would be to learn what pace you can physically tolerate, and adjust your activities accordingly. Some of our vasci peeps run marathons and have mild ongoing issues. Others, like me, didn't fare as well and struggle with systemic health problems.

Keep the faith and you do you! We dodged a bullet, health-wise, and need to appreciate that.

Wishing you improved health and Merry Christmas holidays!

Michele