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Thread: Managing symptoms and treatment for a flare

  1. #11
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    Default Re: Managing symptoms and treatment for a flare

    Quote Originally Posted by GPA4Me View Post
    I've been taking 20 mg of Omeprazole for years to control my GERD and it works very well. I asked my Nephrologist about the claims that it may hurt your kidneys and he said it is very rare and not to worry about it. I was buying OTC Prilosec but later found out my PCP could prescribe it and my insurance pay for it.
    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.
    Knowledge is power! Wisdom is using it to make good decisions!

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  3. #12
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    Default Re: Managing symptoms and treatment for a flare

    Quote Originally Posted by drz View Post
    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 the need to rinse as often. The improvement in my prostrate is very puzzling but apparently the GPA must contribute to inflammation in that area too. I wonder if the improvement will last when my prednisone dosage gets down real low.

    The GERD issues seem to come and go but I've noticed that if I take my prednisone meds with meals I generally have less problems. I haven't had any more of the red inflammation on my legs but I have had several episodes of intense scratching, even to the point I woke up bleeding from scratching too much on my ankle.

    Fatigue and shortage of breath continue to be ongoing issues for me but I hope they will generally improved too.
    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 rate increase 50% from any exertion. I have been to the ER room three times and they don't have a clue as to what this causing my symptoms. The only lab that looks at all different is my white blood count which is about double its normal level for me. My CRP has dropped back into the normal range.

    I have done three chest x-rays and Doctors say they look fine and claim my lungs sound clear. One doctor prescribed an antibiotic thinking maybe I could have an infection that they can't locate but it does not seem to have resulted in any improvement in my condition but I still have four days left on it. What puzzles me is before my flare I could easily walk a mile without any difficulty and now I can NOTeven do one flight of stairs or walked more than 50 feet without being totally exhausted himand short of breath.

    My last rituximab treatment was three weeks ago and I'm currently on 35 mg of prednisone. I tried going down to 30 but then got a lot of bloody mucous in my sinus rinses. I am also taking medicine currently for thrush. I also had to go back on my pentamadine treatment and had my last 2 weeks ago.
    Last edited by drz; 06-08-2021 at 11:53 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #13
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    Default Re: Managing symptoms and treatment for a flare

    Dr Z,
    Several weeks ago I felt that I was getting pneumonia. I went to my Dr & she said I sounded clear (I had been using inhalers) & she felt that I had a PE. My chest X-ray was normal and she sent me to the ER. They did a CT scan that showed I had pneumonia. Iím not sure why it didnít turn up in X-ray maybe it was just beginning. I strongly feel that if you feel there is something wrong there is something wrong. Perhaps you need either a CT scan? Also, how is your heart? Is there a chance you have congestive heart failure?
    Good luck
    Natty


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    Default Re: Managing symptoms and treatment for a flare

    Quote Originally Posted by NatriceRomeo View Post
    Dr Z,
    Several weeks ago I felt that I was getting pneumonia. I went to my Dr & she said I sounded clear (I had been using inhalers) & she felt that I had a PE. My chest X-ray was normal and she sent me to the ER. They did a CT scan that showed I had pneumonia. Iím not sure why it didnít turn up in X-ray maybe it was just beginning. I strongly feel that if you feel there is something wrong there is something wrong. Perhaps you need either a CT scan? Also, how is your heart? Is there a chance you have congestive heart failure?
    Good luck
    Natty


    Sent from my iPhone using Tapatalk
    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 extreme fatigue and shortness of breath. It turned out that the prednisone was increasing my heart rate to the point it was not filling up with oxygen leading blood but kept trying to pump it out faster. When my heart rate was fluctuating from 50 to 150 they evaluated me more extensively for a heart attack and uncovered information that allowed my rheumatologist to correctly diagnose my issues. This included a CAT scan and ultrasound of my heart. They doubled my blood pressure medicine which cut my heart rate back down to a normal range of being under 90 and usually in the 70s or 80s. It did puzzle me as to why it took them a month to figure out how to reduce my elevated heart rate.

    It had been 2 1/2 weeks since my last rituximab treatment so they are cutting back on my Azathioprine maintenance meds and working on slowly tapering my prednisone down. I am currently at 30 mg a day and 100 Azathioprine for maintenance. They believe that once I get back to lower dosages of prednisone my heart dysfunction will disappear since there is no physical problem present.

    The biggest concern right now is my extremely high risk of any infection since my leukocytes are extremely low. Most people with AIDS have about twice as many as I do so I have to continue to self quarantine.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Managing symptoms and treatment for a flare

    Has anyone heard from drz in the last 10 days or so ? I am worried about him... @drz please let us know how are you doing. I pray for you.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  9. #16
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    Default Re: Managing symptoms and treatment for a flare

    I just found a post from yesterday. So I hope it means that you are well, drz.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  11. #17
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    Default Re: Managing symptoms and treatment for a flare

    The Vasculitis Foundation and the American College of Rheumatology just published their guidelines and recommendations for treating ANCA Associated Vasculitides.

    https://www.vasculitisfoundation.org...Vasculitis.pdf
    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

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    Default Re: Managing symptoms and treatment for a flare

    Quote Originally Posted by Alysia View Post
    I just found a post from yesterday. So I hope it means that you are well, drz.
    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 issue as it heals. I am still on 25 mg of pred and having shortage of breath from any activity. It will take awhile to get back down to lower dosage where my heart rate will go back to normal and fix this issue for me. At least that is what my doctors tell me. A GPA flare is a great way to work on increasing ones patience.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Smile 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 painful to use that arm. The doctors that evaluated it said it was not a frozen shoulder which I had before years ago. When the pain moved down to my arm that night I knew it was a GPA related pain. It turned out that the bicep muscle had detached or popped off the top connection which relieved the acute pain in shoulder but then the pain in the arm was from swelling from detachment. Later evaluation by ortho department said I was lucky it detached on top since then nothing further is required. If it happens on the bottom they need to do surgery to cut the top one to reduce the pain. The remaining bicep muscle takes over the function and gradually becomes stronger and the detached muscle atrophy and the pain decreases as the swelling goes away.

    This was a strange new problem for me but I remember being warned that high dosage of pred meds weakens our tissue so we need to be careful not to tear anything. There was no strain or heavy load on shoulder or arm that I can remember and it seemed to develop over night.

    It has been 5 months since last RTX treatment and I am still on 20 mg pred and 75 of AZA and waiting for next labs to see if I can lower the pred meds more. I have serious shortage of breath from the higher dosage as it messes up my heart rate which races up to 130 from any activity. The good news is evaluation indicates no physical problem or deterioration in my lung damage or heart's physical condition and things should get better if I can just get lower on the pred meds without having the GPA flare back up again. I have a secondary autoimmune issue too with eczema on my scalp that causes inflammation of eyelids, sores on scalp, and dry eyes that require extra eye drops to treat. My main GPA symptoms are better and mostly mild at this time.

    I am considered at risk of getting reinfected even though fully vaccinated given my health issues so I continue to be careful and limited in my social interactions. I also lack the energy to do much other that the basics of daily routine.

    Our area has also had several bad air warnings from forest fires near us which encourage us with lung damage to stay inside.
    Last edited by drz; 08-10-2021 at 11:19 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default 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.
    Knowledge is power! Wisdom is using it to make good decisions!

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