Ongoing GPA symptoms with negative labs

[Nancy]

Hi everyone - Looking to see others experiences with similar issues. I have been diagnosed with GPA for over 25 years. Used Cytoxan for 10+ years as other meds were not effective for flare stabilization. Since Rutuximab was approved - have had good results/stabilization - have some reaction with every infusion - now taking every 9 months for continued support. Previous to December 2020 when I was dx with COVID, I had intermittent transient pain: arthralgias and myalgias, minor vasculitis rashes on lower legs, fatigue issues. I work as a Nurse Practitioner in an acute care hospital - diagnosed 4 days prior to initial scheduled vaccine dose.
I stayed home x 2 weeks and received remdizivir as well, then waited 3 months to be given COVID vaccines.
After COVID, I have continued to experience previous symptoms of muscle/joint pains, fatigue but now they are not going away - just fulltime experiences... They are just there and have worked me down to total exhaustion. I am currently off work while we review labs, etc for potential progressive muscle autoimmune disease. Planned muscle studies - EMGs - but GPA labs/everyday labs are all stable - no inflammation - normal SED rate, CRP, CK levels. I am looking to see if anyone has similar issues of continuous symptoms of pain, weakness, fatigue and normal labs and what your providers tell you... The depression - which is new for me, is not good - but dealing... My rheumatologist is helpful but limited experience - so seeking others experiences. Did just get booster shot #3 - as hopeful that I can return to work at some time as I am 57... not ready to quit. Thank you for your time and review...
Nancy

[Pete]

Hi Nancy,

Have you asked your rheumy to consult with a vasculitis specialist? Perhaps someone at Cleveland Clinic or Mayo Clinic can get things sorted out for you.

Good luck!

[Dirty Don]

Many years ago, Jack intimated that just because we have GPA doesn't mean we can't get something else. Jack is/was a pioneer on here. I'm with Pete, get to a major clinic that can/likes to deal with this stuff. And normal signatures aren't necessarily clear sometimes, took Mayo in PHX 24 hours to figure me out...best to you!

[NatriceRomeo]

Hey Nancy,
I feel like we have many things in common.
I was diagnosed 25+ years ago. I work in health care. I have been on Rituxin for a few years. Was diagnosed with covid in November and had double pneumonia. Had the vaccine in February and Rituxin in March. In April I was diagnosed with pneumonia again which has not resolved. Now have atelectasis. I keep failing PFT. The pulmonologist thinks that the vasculitis is affecting my respiratory muscles. I am about to go out on FMLA. I’m frustrated and angry. Anyway! Here’s hoping we get answers and get better!
Natty


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[vdub]

Many years ago, Jack intimated that just because we have GPA doesn't mean we can't get something else.
Ah, yes, I remember when he said that. I had many great conversations with Jack! And, he was right -- I have 3 additional diseases on top of Wegs. The worst is fibromyalgia. I'm always in some level of pain, but I don't ever know the cause and it moves around my body -- sometimes its my entire body.... Those are real bad days. I suspect it is the fibromyalgia more than the Wegs. I believe the Wegs is pretty much under control. But, yes, Jack was right -- I miss Jack....

[J@$0N]

Just getting started in this and just getting past COVID.. I was given Regeneron and have been working through it. Went to RA today for blood work hoping the numbers are still heading in the right direction. Coming up on the next round of Rituxan mid September. I don’t know how a flare feels or what to look for. I’m not planning to get the jab, but was told I was good for at least 90 days from the antibody treatment. Definitely look into it if you get Covid.. Do flares usually occur in specific areas where your trouble began, or is it random?

[drz]

Just getting started in this and just getting past COVID.. I was given Regeneron and have been working through it. Went to RA today for blood work hoping the numbers are still heading in the right direction. Coming up on the next round of Rituxan mid September. I don’t know how a flare feels or what to look for. I’m not planning to get the jab, but was told I was good for at least 90 days from the antibody treatment. Definitely look into it if you get Covid.. Do flares usually occur in specific areas where your trouble began, or is it random?

For me my residual GPA symptoms tend to be recurrent and help me assess how active my GPA is but new ones also develop and old ones change over time so my answer is both.

[Peter Marsham]

My first symptoms were a massive skin rash and focused chronic joint pain (left side, shoulder, elbow, hip, knee), two years ago. Recently I’ve had acute recurring left hip and lower back pain, had my third MRI for this year to see what was going on.
It turns out it was just wear and tear, though damage from the vasculitis from before initial diagnosis may have had something to do with it, but my rheumy said he’d just keep an eye on it for now (more MRIs before Christmas, apparently.) I’m thinking, since you’re a nurse, you do a bit of running around and endure fairly intense physical and mental stress? Add COVID and Wegs to the mix. Perhaps it’s just starting to catch up.
I can relate to the depressive episodes, I’ve had PDD (formerly Dysthymia) for most of my life, and it took an autoimmune disorder in the middle of the pandemic to make me start to seek professional help. It can and will happen, especially right now.