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  1. Thread: Third Vaccine

    by drz
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    1,615

    Re: Third Vaccine

    From what I am reading today protection from vaccination starts to wane at 3 months and provides little protection after 6 months, hence the need for boosters.
  2. Thread: Pain in chest wall

    by drz
    Replies
    5
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    247

    Re: Pain in chest wall

    The chest wall pain is mostly gone now:smile1:
  3. Thread: Flare up Freak out

    by drz
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    607

    Re: Flare up Freak out

    Yes I did the radioactive tracing to detect any blood clot and there was none. My shortness of breath seems worse as I reduce the pred meds but unsure if there is any relationship between the two.
  4. Thread: Autoimmune summit

    by drz
    Replies
    0
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    75

    Autoimmune summit

    https://whova.com/web/autoi_202104/

    The American Autoimmune Related Diseases Association is proud to present our Inaugural Autoimmune Summit! This virtual two-day event will feature 23...
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    Re: Cyclophosphamide (Cytoxan)

    I took CTX about a year. I started with an IV and then went on oral meds. My pred was tapered down about 50 % during this time depending upon the lab results. It did finally get me into a drug...
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    Re: A great doctor wants our help

    Sorry to hear about your poor care. Any chance you can seek better care elsewhere?
  7. Thread: Pain in chest wall

    by drz
    Replies
    5
    Views
    247

    Re: Pain in chest wall

    The pain decreased to a mild discomfort but can increase from certain movements. I found heat helps decrease it. It is still tender in that area if I touch it. My physician told me it is very common...
  8. Thread: Pain in chest wall

    by drz
    Replies
    5
    Views
    247

    Pain in chest wall

    The other day I had severe pain and spasms in the left chest wall that immobilized me. A couple days later it is down about 50% It was a new symptoms for me and worst pain I can remember. No idea...
  9. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    I lost my hearing and balance before I ever had RTX so think it was due to GPA and not the RTX treatment. High dosage of pred did not restore it.
  10. Thread: Third Vaccine

    by drz
    Replies
    41
    Views
    1,615

    Re: Third Vaccine

    Prednisone weakens your body to increase risk of torn skin and connective tissue. Tearing a tendon becomes a real risk and problem if it happens. I was warned about it when I started my follow up...
  11. Thread: Third Vaccine

    by drz
    Replies
    41
    Views
    1,615

    Re: Third Vaccine

    Good advice to maintain precautions. I got the same advice even though testing indicated I developed some antibodies but doctors said we don''t know if they are enough and the right kind to yield...
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    Re: A great doctor wants our help

    If any of the several doctors I consulted before my diagnosis two years later had used the app Find a Zebra I could have save a lot of damage to my body like loss of hearing, balance, kidney damage...
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    Re: Ongoing GPA symptoms with negative labs

    For me my residual GPA symptoms tend to be recurrent and help me assess how active my GPA is but new ones also develop and old ones change over time so my answer is both.
  14. Thread: Flare up Freak out

    by drz
    Replies
    9
    Views
    607

    Re: Flare up Freak out

    I also had a flare after my Covid-19 vaccination and am still trying to recover from the treatment, mainly the high dosage of pred meds which started at 60. I am down to 15 but some issues that went...
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    Re: Managing symptoms and treatment for a flare

    If I am still my pulse is usually in the 80's but races upward from any activity.
  16. Thread: Third Vaccine

    by drz
    Replies
    41
    Views
    1,615

    Re: Third Vaccine

    I am still recovering from my flare from the vaccinations and am concerned that a booster would cause another flare of my GPA. I did get some protection from the vaccinations but how much and for...
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    Re: Managing symptoms and treatment for a flare

    They doubled my blood pressure It meds. helps but i still race up to 133 at times just from a short walk or any activity like tying my shoes, but often get too low (42) if sitting a long time.
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    Re: Managing symptoms and treatment for a flare

    My pred dosage is being reduced to 15 per day and hope it helps with heart racing and shortage of breath without any increase in GPA symptoms.
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    Re: Managing symptoms and treatment for a flare

    My health has been mostly the same. The only big issue I have had while trying to recover from the flare induced by Covid vaccination was developing a sharp pain in right shoulder that made it very...
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    Re: Managing symptoms and treatment for a flare

    I had a biopsy removed today that tested positive for skin cancer. Sort of interesting to watch the surgical procedure but know it will take a long time to heal and I expect the itching will be a...
  21. Re: Bloods Negative, doctor doesn’t want to do nasal biopsy.

    The main lesson I learned from GPA was that it is not sufficient to know what something isn't. You need to persist to find out what is actually causing the problem before it becomes life-threatening...
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    Re: High Blood Pressure and Fast Heart Rate

    I had to double my metropolol to keep my heart rate under 100 after I went on high dosage of pred to treat my GPA flare. I ended up in ER several times with heart rate over 140 until they adjusted my...
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    My vaccination worked

    My lab results yesterday confirmed I did get some Antibodies after my Covid-19 vaccinations even though I had RTX a few weeks later since the vaccine pushed me into a GPA flare. I was smoldering...
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    Re: Managing symptoms and treatment for a flare

    It took several weeks and several trips to the ER before my rheumatologist who treats my GPA was able to sort out my issues. The local doctors kept telling me they didn't find anything to explain my...
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    Re: Dr. Appt. - Vaccine did not work (no antibodies)

    My doctors believe it did. I was smoldering before though so it didn't take much to push me into a flare. I would still do it again even though I am uncertain the vaccination gave me much protection...
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