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Type: Posts; User: drz

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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...
  2. 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...
  3. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    No doctor has been willing to test me for antibodies since they say there is no point. If they aren't present, then what since there is no next step being recommended at this time. Even if they are...
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    Re: Managing symptoms and treatment for a flare

    Fatigue can shortness of breath from any exertion has become a very significant issue for me. I can no longer walk more than a few feet without feeling short of breath. My pulse rate and respiration...
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    Re: Managing symptoms and treatment for a flare

    I have been taking 80 mg of propranolol (generic Protonix) for years for my GERD which is double the usual recommended dosage. I have to get an exemption from insurance each year to get it covered.
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    Re: Managing symptoms and treatment for a flare

    My prednisone meds it's been reduced to 40 mg a day but it is still creating problems with my insulin levels. My sinus rinses have been amazingly clear as well as my nasal passages so I don't feel...
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    Re: Managing symptoms and treatment for a flare

    I am wondering now if the hot inflamed areas on my legs could have been an allergic reaction to the meds I was taking for Thrush. I quit those meds and have not had that reaction since.
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    Re: Managing symptoms and treatment for a flare

    What has worked best for the inflammations that feel like I am being attacked by a hot iron is to use hot packs or run hot water over inflamed area. The areas even look very red like they have been...
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    Re: Coronavirus and GPA

    How many people have been tested after the Covid-19 vaccination's to find out if they developed adequate protection tool Covid-19? How important is it for us to do so? Any information on how valid...
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    Managing symptoms and treatment for a flare

    I got a 1000 milligrams rituximab a week ago and am scheduled to get the second 1000 next week. I also increased my prednisone meds to 60 mg a day but am also continuing on my AZA maintenance meds...
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    Re: I am a new member & fairly newly diagnosed

    i have got good care from doctors who who not regarded as experts in treating Wegener's Granulomatosis or autoimmune disorders but they consulted with the world experts about my my care and how to...
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    Re: How many subglottic stenosis surgeries?

    Sorry to hear about you having this recurrent difficulty since it can be a great source of anxiety when you worry about being able to swallow and breathe. I have been evaluated for stenosis several...
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    Re: Coronavirus and GPA

    I think my GPA was smoldering before the Covid 19 vaccine checked it into a more serious flare. I had never been able to get back to my basic maintenance meds of 5 mg of prednisone after a couple of...
  14. Slowing the progression of multiple sclerosis by following a strict diet.

    I saw an interesting movie last night called Living Proof about a movement where many people had arrested or slowed the progression of their multiple sclerosis by following a very strict diet....
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    Re: Gave Up on Facebook Groups

    So did your research suggests the rate of decline increases at the age of 65 and older. I was over that age with about 40% normal kidney function at the time so I understood the doctor to say if I...
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    Re: Gave Up on Facebook Groups

    My kidney damage was initially caused by decades of diabetes but Wegener's granulomatosis nearly finished them off. I had been told by my nephrologists that it is normal to lose about 5% kidney...
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    Re: Celebrate how far we have come!

    Rituximab treatment was a long and exhausting day. It took over eight hours since it had been 11 years since I had it before and concerned about my numerous allergies cause them to go very slowly....
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    Re: Reactions to Covid-19 vaccinations

    My joint pain seemed part and parcel of normal Wegener granulomatosis so no additional treatment beyond treating the Wegener's granulomatosis with an auto immune suppressant and prednisone was...
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    Re: My 11th anniversary of my Weg diagnosis.

    In recognition of my 11th anniversary of my diagnosis of Wegener's granulomatosis I posted underneath my other thread about celebrating the fact that we are still here. Those of us that have been...
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    Re: Celebrate how far we have come!

    It was 11 years ago that I was beginning my recovery from my intubation at the ICU unit at the University of Minnesota. The pandemic hit our area early in the spring of last year and I was advised ...
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    Re: I am a new member & fairly newly diagnosed

    My current treatment situation is somewhat similar to yours. I'm having my first flare that will require rituximab treatments For the first time in over 11 years. I lost my hearing during the initial...
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    Re: Reactions to Covid-19 vaccinations

    Roving joint pains are often one of the first signs of developing Wegener's granulomatosis. For me it was also one of my most common residual effects of the Wegener's granulomatosis along with...
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    Re: Reactions to Covid-19 vaccinations

    We had virtual visit today and reviewed my history and agreed the Wegener's Granulomatosis had been smoldering for awhile which is what made it impossible to get back down 5 mg pred for that part of...
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    Re: Reactions to Covid-19 vaccinations

    It took 10 days to get it confirmed but my rheumatologist decided I'm having a serious flare and has scheduled me for rituximab treatment on Friday. He believes that all of my current symptoms as...
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    Re: Suspected Sneaky Kidney Involvement

    My doctors told me to only take Tylenol for over the counter stuff. Most prescription stuff will be OK since they know your record.They also have me take a low dosage aspirin daily to try reduce my...
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