User Tag List

Likes Likes:  6
Results 1 to 5 of 5

Thread: New here, and new to GPA

  1. #1
    Join Date
    Dec 2022
    Posts
    3
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default New here, and new to GPA

    Hello Everyone!

    First, I want to thank everyone who participates in this forum. I've read a bunch of these posts over the last couple months while learning about GPA, and it's been valuable to read about so many of your experiences.

    I've recently started seeing a rheumatologist over, what they suspect, could be possible GPA.

    In February of 2022, I started experiencing pretty severe nasal congestion. This congestion was pretty abnormal for me, since I've never been one to get sinus infections, have allergies, etc. I couldn't breathe through my nose at all without using Afrin (OTC Sudafed didn't work either ). I went to my primary doctor who said it was most likely allergies, and placed me on Claritin and Flonase and told me to come back in 1 month. I follow up a month later, without improvement, and she refers me to an ENT.

    I start seeing the ENT off/on for the next 6 months or so. At first, they treated me w/ two 10-day courses of Augmentin. They also ordered a CT of my sinuses. The CT was normal except for a slight deviation in my septum. The ENT prescribed some sinus rinses + budesonide and performed a scope of my nose. He noticed that the inferior turbinates on both sides were really swollen, and said that my septum was pretty inflamed. He also noticed that I had some crusting and evidence of nosebleeds. There was also an ulcer on the right side that they were worried might perforate, but it's since healed. He said that I would benefit from sinus surgery, but because of the inflammation/crusting that they wanted to run a couple blood tests to check for vasculitis.

    The ENT ordered blood tests to check my SED rate, CRP, and ANCA. The SED rate and CRP were normal, but the ANCA screen came back positive for C-ANCA and I had a slightly elevated PR-3 value as well. Since those two tests came back positive, the ENT said no surgery for now and referred me to my rheumatologist.

    I started seeing the rheumatologist on 12-22-2022. We talked for probably an hour about symptoms that I have experienced for the last year or so. We came up with the following...


    • Sinus Congestion (awful)
    • Nasal Crusting (pretty annoying when not doing the rinses)
    • Nose bleeds (regularly?)
    • Fatigue (I nap every single day now after work, which I never did prior to all this starting)
    • Slightly elevated temperature (it's almost always 99.7 - 100)
    • Joint pains (mostly in my knees, but definitely towards the bottom of things bothering me)


    The rheumatologist said that they wanted to order a bunch of extra blood work + a urinalysis to make sure that there wasn't anything else going on behind the scenes. Assuming these come back negative (which they have), they are going to treat it as sinus limited GPA, but she informed me that it doesn't have to stay that way and it's important that I'm aware of any changes in my body/habits/etc. She put me on methotrexate + a taper of prednisone (30/20/10/5/2.5) and is set to see me again at the end of march.

    All that said, I wanted to ask a few questions of you all, since you've all had experiences with this stuff.


    • Have you had success w/ methotrexate and prednisone?
    • Do the nose issues ever go away?
    • Should I keep pushing back on my rheum and looking for alternatives?


    I've felt better(ish) since I've started the prednisone. My nose has felt better than it has anytime in the last year. It's still congested, but at least I'm able to breathe through it most of the time

    My wife also says that my energy levels have gone back up and I look better (how rude ). I've also stopped napping as much.

    Thanks everyone, and I look forward to talking to everyone and being a part of the community.

  2. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New here, and new to GPA

    Hi @Dallas

    It seems you’re on the right track. For me, methotrexate was a maintenance med after cyclophosphamide and prednisone got the disease under control. I now get two 500 mg infusions of rituximab yearly. This is the only med I take for GPA.

    I had some nasal/sinus involvement early on. Pulmonologist (leader of my treatment team then) suggested I take Claritin and a decongestant daily. I use Claritin and Flonase and my sinuses and nose stay pretty clear. I occasionally use a sinus rinse if I get extra stuffy.

    I would advise keeping in touch with your rheumatologist. Note any changes in your symptoms. Don’t be afraid to ask questions. Some meds have pronounced side effects. Find out what to look for. How familiar is your rheumatologist with vasculitis? Is he/she willing to consult with an expert at Mayo or Cleveland Clinic?

    I get monthly labs including CBC, comprehensive metabolic panel, sedimentation rate, and urinalysis. Over time, I’ve developed stage 3 kidney disease, another manifestation of GPA. I really follow my creatinine level (a bit above normal but stable) and eGFR (a bit below normal and almost exactly inversely related to creatinine). I get the urinalysis because one of the side effects of long-term cyclophosphamide is bladder cancer (so far, so good after being off it for over ten years).

    The good news is that, with effective treatment, you can lead a pretty normal lifestyle. I’m 76 and twelve years in.

    Good luck, and let us know how you’re doing.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  3. Likes drz, Dirty Don, Masha liked this post
  4. #3
    Join Date
    Dec 2022
    Posts
    3
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New here, and new to GPA

    Quote Originally Posted by Pete View Post
    How familiar is your rheumatologist with vasculitis? Is he/she willing to consult with an expert at Mayo or Cleveland Clinic?
    I'm not sure she's super familiar with it. I never really asked because I wasn't really expecting things to go the route they did. I honestly was just expecting to get some antibiotics or have sinus surgery or something. I never expected for them to suspect it was caused by a chronic illness.

    I've read a bunch about the disease in the last couple weeks, and will definitely be more prepared to ask her questions during my next visit.

    How does one go about asking for their doctor to work with others at another hospital? It probably seems silly, but she seemed really understanding and I don't want to offend her lol


    Quote Originally Posted by Pete View Post
    I get monthly labs including CBC, comprehensive metabolic panel, sedimentation rate, and urinalysis.
    She did set me up with a standing order for some labs every 3 months (prior to my appointments with her). It looks like she set me up with the same thing as you (expect for the sedimentation rate, but that was never elevated).

    I've been feeling a bit better on the medicines though. I'm guessing it's not the MTX yet, and it's probably the prednisone, but I've had more energy and haven't been as stuffy. I wish I could get my nose back to how it felt before all of this started, but I'm not sure that is ever going to happen.

    It's great that there are support groups for this type of thing. I really enjoy reading about everyone else's experiences, even when they're not so pleasant. I'm glad you're doing well and hope you continue to do well!

    Thanks for reaching out to me!

  5. #4
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New here, and new to GPA

    Quote Originally Posted by Dallas View Post
    How does one go about asking for their doctor to work with others at another hospital? It probably seems silly, but she seemed really understanding and I don't want to offend her.
    I was diagnosed at Ohio State. After about a year of treatment, and a major relapse due to a medication change, I asked my pulmonologist how many vasculitis patients he was treating. He said about 3 dozen. By this time, I had joined this forum and learned that Cleveland Clinic had significant vasculitis expertise. I asked for a referral there, but he said I could self refer, so I did. He was fine with that saying he didn’t know who to refer me to, but if my insurance pushed back to just give him a name and he would refer me. I see Dr Alexandra VillaForte at Cleveland. She’s excellent. All she treats is vasculitis patients — 50-60 per week.

    You may want to check the Vasculitis Foundation’s website to see if there’s a vasculitis specialist near you. If your rheumatologist isn’t comfortable with consulting with a “foreign” doc, you may have to politely advocate for consultation or referral. After all, it’s your health!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  6. Likes drz, Masha liked this post
  7. #5
    Join Date
    Dec 2022
    Posts
    3
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New here, and new to GPA

    Awesome, I appreciate your advice.

    I live about an hour south of Pittsburgh, so Cleveland wouldn't be a huge lift. It looks like UPMC also has some specialists. It might be worth traveling the extra couple hours to see Villa-Forte if I can get in there. This isn't the first time I've seen that name thrown around. I will talk to my doctor and see what she has to say about it.

    Thanks a ton! This has been super helpful.

  8. Likes Masha liked this post

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •