GPA - New Symtoms

[UncleD]

Hi All, I am glad to be a part of this forum. I was diagnosed with GPA in 2021 , sinus symptoms, ear pain etc. Started taking prednisone and methotrexate, that seemed to work for almost a year, however in the fall of 2022, sinus symptoms return full force. Starting in late January, I develop pain in my thighs and calves. So painful that it has been hard to walk. Somedays its my wrist, and arms, and legs, and other days it's just my legs. Starting about a week ago, I also feel just plain sick, and I shiver. It is worse at night, so much so I can hardly move. Anyone have these symptoms ?



Here are my current labs, taken about a week ago. So far Rheumatologist has not said anything.

SED rate doubled for 27 to 66,
there is new blood in urine ,250 U/uL
C-Reactive Protein - High for the first time.
Neutrophil Cytoplasmic Ab Titer 1:320 increased from 1:80

[drz]

You are probably having a major flare of Wegs and need some aggressive treatment to avoid serious body damage. You can have other health issues too besides the Wegs that cause symptoms. A good review by some expert is warranted.

Hi All, I am glad to be a part of this forum. I was diagnosed with GPA in 2021 , sinus symptoms, ear pain etc. Started taking prednisone and methotrexate, that seemed to work for almost a year, however in the fall of 2022, sinus symptoms return full force. Starting in late January, I develop pain in my thighs and calves. So painful that it has been hard to walk. Somedays its my wrist, and arms, and legs, and other days it's just my legs. Starting about a week ago, I also feel just plain sick, and I shiver. It is worse at night, so much so I can hardly move. Anyone have these symptoms ?



Here are my current labs, taken about a week ago. So far Rheumatologist has not said anything.

SED rate doubled for 27 to 66,
there is new blood in urine ,250 U/uL
C-Reactive Protein - High for the first time.
Neutrophil Cytoplasmic Ab Titer 1:320 increased from 1:80

[JeanMarie]

Those sound like wegs symptoms. Definitely need to call the doc. Don't wait!

[Pete]

I agree with drz and Jean Marie. Get to a doctor as quickly as you can. Sedimentation rate and C-reactive proteins are measures of inflammation. They are very high. Blood in the urine may be a sign of kidney involvement or bladder irritation. Your doc may order a cystoscopy to check the urinary tract. Don’t delay!!

[UncleD]

Thank you everyone. I took myself to the emergency room on Feb 22nd. They kept me for 3 days. Solu-Medrol and then started rituximab infusions, due to the blood in the urine.

My big question is, why didn't my rheumatologist send me?

Rheumatologist had blood test results on Feb 15th, and I sent a message on Feb 18th saying I would now like the infusions (see background below), due to the increase of protein and blood in urine, in addition to the other increased labs.

I never heard back.

I am so confused. Should I try to change and get a new Rheumatologist? Going to ER to get treatment, could get expensive.

Background:
Rheumatologist previously told me in Nov 2021, GPA was non-severe, and we tried Methotrexate first. Then I had a flare up of sinus issues in Dec 2022, which then doctor said to switch to rituximab, but I said I wanted to keep trying prednisone and methotrexate, as it was only my sinus at that point. But then the labs took a turn for the worse starting in Feb 2023.

[Pete]

I don’t know where you’re located, but I think it’s time to find a vasculitis specialist. You can go to the Vasculitis Foundation website for this. You may have to travel a bit to get effective care. I drive 125 miles one-way to get vasculitis care at Cleveland Clinic even though I live in Columbus where Ohio State has a great teaching hospital.

[UncleD]

Thank you Pete. I am in Metro Detroit. I thought I had a vasculitis specialist, at least that what they told me.

I made an appointment at the Cleveland Clinic, and got in for next week. I'm just worried about how it will work with labs and if I need to go to U of M ER.

I've read that U of M vasculitis specialist is supposed to very good, but the last few encounters have made me wonder about the care I'm getting. I always feel like i'm doing something wrong when I go see the specialist. Been like that from the first visit. : (

I don’t know where you’re located, but I think it’s time to find a vasculitis specialist. You can go to the Vasculitis Foundation website for this. You may have to travel a bit to get effective care. I drive 125 miles one-way to get vasculitis care at Cleveland Clinic even though I live in Columbus where Ohio State has a great teaching hospital.

[Pete]

Good for you!! I see Alexandra VillaForte at Cleveland. She’s kept me stable since 2012.

OSU has a couple of vasculitis “specialists”, but they seem to be new to the disease. When I was dxed, my dx was a process of elimination involving multiple specialties. I’ve always gotten great care at OSU for other things. As I get older (I’m 76), I hope OSU does get some vasculitis expertise so I don’t have to go so far to be treated.

[drz]

Glad to hear you getting some more appropriate care for your GPA. GPA can simmer for years before it suddenly flares into a serious condition where more aggressive care is necessary. That is why we need to monitor it and have good access to intense care if it becomes needed. A big flare can do a lot of damage in a brief period. Loss of kidneys is a big risk and lungs can get a lot of serious damage.

My GPA simmered with fluctuations for over ten years in what doctors considered a fair drug induced remission until the Covid injections caused a big flare that did a lot of lung damage.

[Pete]

I made an appointment at the Cleveland Clinic, and got in for next week. I'm just worried about how it will work with labs and if I need to go to U of M ER. (

Cleveland Clinic has MyChart, an internet portal where you can make appointments, see test results, review your doctors’ after visit notes, etc. If TSUN, sorry - couldn’t resist, has MyChart, you should be able to get your labs locally and have the results reported to a doctor in another system.