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.

[John S]

For my first visit to Cleveland Clinic, Dr. Villa Forte, I took copies of all my historic records from previous hospital visits. The good Doctor reviewed everything and had my biopsy tissues re-evaluated. She was the one that diagnosed this nasty disease that had confounded all the experts at a major teaching hospital.
I continue to see her at least once a year while also being seen by local physicians.
Cleveland Clinic rheumatology is phenomenal.

[UncleD]

Thank you everyone for the encouragement I find strength in your experience.

It did end up looking like kidney involvement according to the discharge paperwork. I am on infusions now, and will see someone at Cleaveland Clinic, this week.

[J@$0N]

How do you determine a flare vs relapse and so on.. I've been having similar issues with joint pain from when mine started and uncertain of just wear and tear from getting older. How often do you have "flares" per-se? I have been in remission since November 2021, and can't figure out what would have caused a flare. My Rheumatologist said if i was really concerned about it, to come on in. Like you all, this becomes mentally exhausting. Appreciate this group and the discussions.

[UncleD]

Hi J@$on , for me in was the physical symptoms, and then confirmed by the
lab tests. I just didn’t feel normal. Symptoms were way outside my baseline and kept getting worse.

The data showed everything indeed getting worse. I went from sinus to kidney
quickly. This disease moves fast. Monitoring is a must from an experienced doctor.
This forum and the people’s responses helped me see that.



How do you determine a flare vs relapse and so on.. I've been having similar issues with joint pain from when mine started and uncertain of just wear and tear from getting older. How often do you have "flares" per-se? I have been in remission since November 2021, and can't figure out what would have caused a flare. My Rheumatologist said if i was really concerned about it, to come on in. Like you all, this becomes mentally exhausting. Appreciate this group and the discussions.

[J@$0N]

Did the symptoms progress quickly? I've been having joint and other pain, but it seems to ease up and not as persistent. Mine having started in my aorta gets me a little riled up from almost any pain. My Dr has been great and talked with me about it over the phone and told me to come in if i was still uncertain. Just hard to tell what to look for. I appreciate the replies... this is not something to face without input from others.

Thank you,
Jason


Hi J@$on , for me in was the physical symptoms, and then confirmed by the
lab tests. I just didn’t feel normal. Symptoms were way outside my baseline and kept getting worse.

[UncleD]

I was diagnosed Fall 2021 as non-severe, meaning that disease localized in sinuses. Then in Early February 2023, major muscle pain, can't hardly walk, and blood in urine. ER visit showed a minor decline in kidney function, two weeks later tests showed I lost 50% kidney function. I would have been toast if I would have not pursued another doctor who took these signs serious. I am now a believer; this can turn on you fast! Blood work Lab monitoring is a MUST.

[J@$0N]

Were you treated in 2021? I have bloodwork every three months unless the dr and I feel it necessary to go sooner. I've just had similar pains that may stem from other issues. It is just really hard to tell. I think you are able to put a visual to what my Rheumatologist was saying when he said it would be unrelenting pain if I was having a flare up. I'm fortunate that he is always open to me coming in to see or get checked out. He has and has had a number of patients with Wegs over the years. Appreciate the feedback as this can become mentally draining at times. Did your CRP and Sed numbers jump in the initial onset of the flare? If you don't mind me asking, did anything occur that may have caused the flare? Surgery, injury, vaccination, etc.. ?




I was diagnosed Fall 2021 as non-severe, meaning that disease localized in sinuses. Then in Early February 2023, major muscle pain, can't hardly walk, and blood in urine. ER visit showed a minor decline in kidney function, two weeks later tests showed I lost 50% kidney function. I would have been toast if I would have not pursued another doctor who took these signs serious. I am now a believer; this can turn on you fast! Blood work Lab monitoring is a MUST.

[UncleD]

Were you treated in 2021? I have bloodwork every three months unless the dr and I feel it necessary to go sooner. I've just had similar pains that may stem from other issues. It is just really hard to tell. I think you are able to put a visual to what my Rheumatologist was saying when he said it would be unrelenting pain if I was having a flare up. I'm fortunate that he is always open to me coming in to see or get checked out. He has and has had a number of patients with Wegs over the years. Appreciate the feedback as this can become mentally draining at times. Did your CRP and Sed numbers jump in the initial onset of the flare? If you don't mind me asking, did anything occur that may have caused the flare? Surgery, injury, vaccination, etc.. ?

Treated as soon as I was diagnosed in 2021, Methotrexate. Everything fine, until Fall of 2023. Nothing different, no stress, no change, nothing. Only thing that changed was the weather.

Sinus flared up really bad, much worse than 2021, and tehn sed rate ramped up, and then kidney function dropped rapidly.

[J@$0N]

Just had an opportunity to go back through the thread. Rituxan is what I was put on right away... I hope you are seeing improvements.

``` Thank you for that.. I went to my PCP the other day for other issues and had him test my CRP and Sed and both were normal. I'm sorry you are going through this. What are they treating you with this time around?


Treated as soon as I was diagnosed in 2021, Methotrexate. Everything fine, until Fall of 2023. Nothing different, no stress, no change, nothing. Only thing that changed was the weather.

Sinus flared up really bad, much worse than 2021, and tehn sed rate ramped up, and then kidney function dropped rapidly.