Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

[shankxonline]

Hello All

I am from San Francisco area and recently have been told that I might have GPA. Came as a complete surprise from what I went through in last one month. Happy to have a "name" to my pains but I am scared and confused on how the road ahead looks. So happy to see this forum and all the good support members have been giving others in the same boat.

A month ago, I got in ER due to right kidney stone problem. During the exams at the hospital they found a stone alright but also found my left kidney in serious nephrosis (cause unknown). I had no clue or pains about the left kidney at all. While I was getting ready for the out patient surgery to overcome the kidney problems - I started getting severe joint pains and at one point just couldn't walk on my feet. Hands and feet muscles felt weak and when I stood up it felt like standing on very sensitive nerves at the bottom of my feet. Docs first thought was Rheumatoid Arthritis and was put on taper dose of Prednisone. It worked like magic and the pain was gone. I am in week 2 with 20mg prednisone per day and it seems to control the joints pain.

Every day evening, however, I start getting back the pain and nights are tough. I have started seeing some high pressure in my eyes - but not seen any other symptoms that I read here like bleeding nose, difficulty breathing or tiredness. Just acute muscle and joints pains which keep moving from different parts of my hands and feet.

Positive ANCA report and all inflammatory markers has made my Rheumatologist to suspect that I have GPA/WG. but I don't know if that's what it is. Many more tests to follow before I would know...



Anyone has had similar symptoms?
What other tests do docs do to pin point what type of vasculitis I have?
how long should I expect to be on prednisone?
any good doctors in this are you would recommend from your experience?

[andrew]

Hey there welcome to the forums! So happy they found the Kidney issues. Kidney's are weird. They don't give any warnings that they are on their way out until they're almost done. Pain at night sucks a lot. Has there been any mention of raising your Pred dose to perhaps eliminate or reduce the pains?


Anyone has had similar symptoms?
Yep I had the joint pains at the start and was originally diagnosed with Viral Arthritis. My kidney issues were quite dire and I ended up peeing blood and they shut down a short time later. Came back again after that for some reason although I was on Dialysis for a few months.


What other tests do docs do to pin point what type of vasculitis I have?
More blood tests and probably a kidney biopsy which is a little uncomfortable for the few minutes it takes but otherwise boring.


how long should I expect to be on prednisone?
Depends entirely on how you progress. Hopefully you can at least start tapering down at some point but that probably won't be until your symptoms are under control.


any good doctors in this are you would recommend from your experience?
I'll let someone in the US answer this one.

Again, welcome and ask any questions at all.

Cheers
Andrew

[Pete]

shankxonline

Welcome aboard!! I hope you can get great treatment leading to a full recovery. I’m 8 years in and back to a nearly normal lifestyle — making a few accommodations for being 73 yo.

I live in Ohio and my wegs doc is at Cleveland Clinic. Here is a link to the Vasculitis Foundation’s find a doc page. https://www.vasculitisfoundation.org/find-a-doctor/ Dr Sharon Chung at USF treats some folks on here, but I know nothing else about her.

I had lung, sinus, and ear involvement at disease onset. I’ve had just a little kidney involvement, but my first rituximab treatment took care of that.

I’ll echo Andrew about asking questions, sharing experiences, or just venting.

Keep us posted about how things are going!

[Masha]

Hi City by the Bay,
Welcome. I once lived in Los Gatos ( many years ago). I went to Stanford for treatment of a different medical issue. After I read your post I googled them and a bit of more research may find they have the right doctor for you.
I live in the Carolinas and go to Duke. I am a kid compared to Pete, not quite 70 yet.
As you have seen from this site our crazy disease hits in a multitude of ways. My doctor who has been working with this for many years even treated a woman who had Wegeners of the breast.
The trick is to jump on it with a doctor very experienced in it.
It may take a while to find the treatment that is right for you. Just stay positive, and come here for support and help.
Miss my sour dough bread. No one does it like the Bay Area.
Masha

[shankxonline]

Thanks Masha. Will check out Stanford Immunology

[shankxonline]

Thanks Andrew for your reply and for starting and maintaining this excellent forum. I have a follow up with Nephrologist today and will keep you posted.

[shankxonline]

Thanks Pete!

[TommyG]

Hi Bay Area neighbor,
Hope you find some answers soon. If you do have Wegener's, for many of us, including me, things are the toughest at the beginning, until you get it under control. Ten years ago I had to take a leave of absence from work and couldn't even walk around the block. Now I have been back at work at my college for eight years and lead a very active lifestyle. I have been seeing Sharon Chung at UCSF for many years. She is a wonderful doctor and a vasculitis specialist with many Wegener's patients. I also have a great rheumatologist near my home in San Jose. Feel free to PM me for more information or to chat.
TommyG

[annekat]

Welcome to the forum. You are lucky to live in the SF area. There may be several good GPA doctors in the SF area, but the one I've heard recommended most often is Sharon Chung at UCSF medical center. You will find her listed with other specialists on the Vasculitis Foundation website. I think it is also possible that you have MPA, which is closely related to GPA, and I believe also shows positive ANCA. And there may be another one in this category. A specialist would know the distinctions, but in all likelihood the treatment will be the same. Especially if kidneys are involved, you need to get a diagnosis from a specialist so you can get treated with more than just prednisone. There are various immunosuppressants that are used. Good luck and keep us posted.

Anne

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[drz]

Aggressive treatment can usually save the kidneys if caught in time. And often, usually, most symptoms improve with right treatment. For most of us things are usually at their worst at the time symptoms get bad enough to result in the correct diagnosis. GPA (formerly known as Wegener's Granulomatosis) is usually diagnosed by ruling out any other possible cause of the symptoms. Be sure to include good eye care since GPA can cause loss of vision too and many other things. Much of the damage can be permanent so getting quick treatment is needed to avoid this. But treatment today is generally much better since more doctors have become aware of GPA and how to treat it but management is best done with some one with considerable experience treating it.

[sshiveley]

Our symptoms are very much alike, I started with what I and my NP thought was a sinus infection, a round of Zithromax seemed to help for the first couple of days, but I knew it was more than just sinuses. My right side of my face started going numb, swelling and redness to my rt eye, I contacted my NP requesting a cat scan, no response, a few more days went by and my joints started hurting, it was difficult to walk due to the pain. I contacted my NP again asking for pain medication, I specifically asked for a non-narcotic-the only response I rec'd was that she was referring me to neurologist (??) because of the numbness in my face and the swelling continued to get worse for 2 more weeks before I could get into neuro-he ordered a stat MRI and referred me to ophthalmology- all the time my symptoms were worsening, long story short- I had a mass in my rt inner orbit that caused the eye to protrude and stretched the optic nerve to the point that I have double vision in rt eye peripherally, I had a mass in my rt lung-needle biopsy. Both the mass in my eye and lung are due to GPA (vasculitis). I had 4 infusions of Retuximab, was off of work for 2 1/2 months on sick leave. I am still on Prednisone but weaning slowly, had a relapse so I had to start back up on the higher dose of Prednisone and in the process of weaning again. Scheduled to have another infusion of Retuximab in December. I am so frustrated with this, I do not have the energy I once had. No one really understands what we are all going through, it is very difficult to explain to others that I really can't look at you if you are standing to the right of me-the mass in my eye was 15mm, now down to 8mm, the vision is still double,they don't know if this will ever come back to single vision, can you imagine how driving is for me? The numbness on the rt side of the face is still there, still having sinus issues. The mass in my lung has shrunk to just a pea size image now. Everyone that comes into contact with us think we look "wonderful" but have no idea what we have to deal with on a daily basis. I am so glad you reached out to this group, they are very supportive and understand more than anyone, what we deal with daily. Sherry

[drz]

Sorry to hear about your issues. Hope things improve for you. Your case exemplifies how GPA can cause bad things to happen quickly and affirms the need to get quick and appropriate care for any issues. Best wishes for better health.

[shankxonline]

Our symptoms are very much alike, I started with what I and my NP thought was a sinus infection, a round of Zithromax seemed to help for the first couple of days, but I knew it was more than just sinuses. My right side of my face started going numb, swelling and redness to my rt eye, I contacted my NP requesting a cat scan, no response, a few more days went by and my joints started hurting, it was difficult to walk due to the pain. I contacted my NP again asking for pain medication, I specifically asked for a non-narcotic-the only response I rec'd was that she was referring me to neurologist (??) because of the numbness in my face and the swelling continued to get worse for 2 more weeks before I could get into neuro-he ordered a stat MRI and referred me to ophthalmology- all the time my symptoms were worsening, long story short- I had a mass in my rt inner orbit that caused the eye to protrude and stretched the optic nerve to the point that I have double vision in rt eye peripherally, I had a mass in my rt lung-needle biopsy. Both the mass in my eye and lung are due to GPA (vasculitis). I had 4 infusions of Retuximab, was off of work for 2 1/2 months on sick leave. I am still on Prednisone but weaning slowly, had a relapse so I had to start back up on the higher dose of Prednisone and in the process of weaning again. Scheduled to have another infusion of Retuximab in December. I am so frustrated with this, I do not have the energy I once had. No one really understands what we are all going through, it is very difficult to explain to others that I really can't look at you if you are standing to the right of me-the mass in my eye was 15mm, now down to 8mm, the vision is still double,they don't know if this will ever come back to single vision, can you imagine how driving is for me? The numbness on the rt side of the face is still there, still having sinus issues. The mass in my lung has shrunk to just a pea size image now. Everyone that comes into contact with us think we look "wonderful" but have no idea what we have to deal with on a daily basis. I am so glad you reached out to this group, they are very supportive and understand more than anyone, what we deal with daily. Sherry

Thank you for sharing your story, sshiveley. Indeed these initial days are very tough without knowing what the disease will bring every day. I am running through a lot of tests just to get to the bottom of what all is affected and if its indeed GPA. Blood tests and CT scans have ruled kidneys and lungs as clear. Rheumatologist is now focusing on eyes, sinus and head MRI to see if there is trouble there. Still on Prednisone and no signs of moving to DMARDs yet until she has all results back. Hoping something shows a path, I get the right treatment and things can come under control as much as I can.

Your story and positive attitude is an inspiration. Hope things get better for you. Do keep sharing your experiences.

[shankxonline]

Sorry to hear about your issues. Hope things improve for you. Your case exemplifies how GPA can cause bad things to happen quickly and affirms the need to get quick and appropriate care for any issues. Best wishes for better health.

Thank you drz! Chasing the tests and various organs and meds for now.

[tac]

Welcome! I had similar symptoms especially with the eye pressure and bottom of feet pain where I could not even walk for a while. Also had lung infiltration's and shortness of breathe, extreme brain fog. Predisone helped me, then RTX and now I am diagnosed since Feb 2019 (sick since 10/18) I am going to have my 2nd dose of RTX at the end of the month. I am in San Diego and on my 3rd doctor. Have appt. at John Hopkins in November for another opinion on treatment
.

[shankxonline]

Welcome! I had similar symptoms especially with the eye pressure and bottom of feet pain where I could not even walk for a while. Also had lung infiltration's and shortness of breathe, extreme brain fog. Predisone helped me, then RTX and now I am diagnosed since Feb 2019 (sick since 10/18) I am going to have my 2nd dose of RTX at the end of the month. I am in San Diego and on my 3rd doctor. Have appt. at John Hopkins in November for another opinion on treatment
.
tac - thanks for sharing. We indeed share commonality of onset symptoms and I am worried about what follows. Everyone seem to have different experiences regards to where it flares. Curious - what was the deciding factor when the doctor diagnosed you with GPA with certainty?