shankxonline - My path to identify GPA and overcome it

[annekat]

The first thing that jumped out at me was regarding your desire to discontinue prednisone when you start one of the standard immunosuppressant meds, that is IF you are found to have GPA or a similar, but less common Vasculitis, such as MPA. It is generally accepted that people stay on prednisone when started on an immunosuppressant med. It would be very unusual not to use both together, or start them both at the same time, even if you are already taking pred. They each perform somewhat different functions and they work together. If your current rhematologist says otherwise, it may mean you need a more experienced specialist. I'm not sure if you are the one in the SF Bay area, but it should be a lot easier to find a good specialist there than in most places.

The other thing I noticed was a biopsy wasn't mentioned, unless I missed it. It's great that you don't apparently have lung or kidney involvement! But those can crop up later without proper treatment. If you have nasal involvement, a biopsy can be done there, or a specialist would know where else based on your symptoms. Nasal biopsies are known to give false negatives fairly often, but if that is the place that makes the most sense according to your symptoms, then it's worth a try, and in my case it provided a positive result, which was considered conclusive. It can be done on an outpatient basis, and in my case was done on the spot in my ENT's examination room. If you don't have an ENT, you should, as they are better able to see what is going on in your nasal area than most rheumatologists, and would be the one to do the biopsy. Your rheumatologist should know all this.

With the nasal, eye, and joints involvement, and a positive ANCA if I remember right, it does sound like GPA or another Vasculitis. If you had a positive c-ANCA, it would usually indicate GPA, and if it was positive p-ANCA, it would usually mean MPA. What little eye and joints involvement I had disappeared quickly with treatment, but my lung and nasal/sinus/ear involvement took considerably longer. I was on immunosuppressants and prednisone the whole time, and am still on a maintenance med and low dose of pred, after 9 years. Yet I am in better shape than many. At 2 months, you will be lucky to have gotten an early diagnosis, if you get one. Mine came 2.5 years after start of symptoms. An early dx means better chance of quicker remission and less damage to one's tissues and organs.

I might sound like I know a lot, but it is only info I've soaked up in 9 years of being on this forum and reading lots of case histories as described by patients. And it can be corrected if necessary. Everyone's case is at least a little different and sometimes a lot. Sorry I went on so long. Best of luck and success at getting this figured out and taken care of!

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It

[shankxonline]

The first thing that jumped out at me was regarding your desire to discontinue prednisone when you start one of the standard immunosuppressant meds, that is IF you are found to have GPA or a similar, but less common Vasculitis, such as MPA. It is generally accepted that people stay on prednisone when started on an immunosuppressant med. It would be very unusual not to use both together, or start them both at the same time, even if you are already taking pred. They each perform somewhat different functions and they work together. If your current rhematologist says otherwise, it may mean you need a more experienced specialist. I'm not sure if you are the one in the SF Bay area, but it should be a lot easier to find a good specialist there than in most places.

My Rheu is still figuring it out. Its just me not wanting to continue on Prednisone (or any steroid) for long period if possible. I don't know what long means. Right now at 40mg per day.

The other thing I noticed was a biopsy wasn't mentioned, unless I missed it. It's great that you don't apparently have lung or kidney involvement! But those can crop up later without proper treatment. If you have nasal involvement, a biopsy can be done there, or a specialist would know where else based on your symptoms. Nasal biopsies are known to give false negatives fairly often, but if that is the place that makes the most sense according to your symptoms, then it's worth a try, and in my case it provided a positive result, which was considered conclusive. It can be done on an outpatient basis, and in my case was done on the spot in my ENT's examination room. If you don't have an ENT, you should, as they are better able to see what is going on in your nasal area than most rheumatologists, and would be the one to do the biopsy. Your rheumatologist should know all this.

Her plan seems until she sees an organ where its likely to have affected she would go for biopsy. Lungs and kidney tests have come out normal and I was directed to specialists in those fields who said biopsy is not needed. Eye/Nasal reports to be seen.
Joint pains and muscle dont seem to give them enough evidence to do any biopsy it seems.

With the nasal, eye, and joints involvement, and a positive ANCA if I remember right, it does sound like GPA or another Vasculitis. If you had a positive c-ANCA, it would usually indicate GPA, and if it was positive p-ANCA, it would usually mean MPA. What little eye and joints involvement I had disappeared quickly with treatment, but my lung and nasal/sinus/ear involvement took considerably longer. I was on immunosuppressants and prednisone the whole time, and am still on a maintenance med and low dose of pred, after 9 years. Yet I am in better shape than many. At 2 months, you will be lucky to have gotten an early diagnosis, if you get one. Mine came 2.5 years after start of symptoms. An early dx means better chance of quicker remission and less damage to one's tissues and organs.

Keeping my fingers crossed and all the inputs from this forum helps a lot.

I might sound like I know a lot, but it is only info I've soaked up in 9 years of being on this forum and reading lots of case histories as described by patients. And it can be corrected if necessary. Everyone's case is at least a little different and sometimes a lot. Sorry I went on so long. Best of luck and success at getting this figured out and taken care of!

Sent from my MotoE2(4G-LTE) using Tapatalk
It

Thank you for your detailed post and I need all the inputs I can get until I know what I have and where it takes me! So - THANK YOU!