My Diagnosis

So this blog post will be about my medical issues.  So if you are here to read about farming I would suggest you skip this post and resume tomorrow when I should have a post about new piglets.  

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My diagnosis is HLA-B27 positive reactive arthritis.  This means I am of a genetic type that is prone to abnormal inflammatory responses.  I was then triggered by my Norovirus gastroenteritis infection at the beginning of February.  This caused a severe and abnormal immune reaction which makes me feel like I have a disease like influenza but also causes inflammation in large joints of the body and tendons.  It will likely keep flaring up, but the rheumatologist could not predict how long.  I am back on prednisone now as I had another flare up this afternoon (the worst yet), and I will likely need another medicine to suppress my immune system, sulfasalazine.  If this doesn’t work the next step is methotrexate, and there are more option if that doesn’t work.  Whichever medication works for me I will need to be on it long-term to try to keep this under control.  This abnormal inflammatory response is usually not permanent.  

But one scary aspect is being on these types of medication during this pandemic.  There are concerns that you may be more susceptible to it and have a more severe illness on these medications.  My other concern is getting another diarrheal illness which may trigger my abnormal immune system further.  But at least I have my diagnosis and am getting used to the idea.  And I have some idea what to expect.  It is not life-threatening.  But I was correct that I have a chronic illness and will have to learn to adapt to it.

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18 Responses to My Diagnosis

  1. I used to take methotrexate, I have Psoriatic Arthritis. I was too concerned about the affect on my liver so I got a medical marijuana license. It works just as well and doesn’t damage the liver.

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  2. Jeanne says:

    Oh Donna! I’m so sorry, because that doesn’t sound very pleasant. I’m glad you had a good idea that you had something chronic. I’ve not heard of this particular disorder. Is it an auto-immune thing? I’ll look it up online. Please take good care of yourself. I’ll keep you in my prayers.

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  3. Amy says:

    I am so sorry to hear this! Has Tom been able to come back and help you? Do you have adequate PPE at work to keep you safe once you return? We will keep praying that you will will find the right medicine soon so that you can regain your strength.

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    • Donna says:

      Thanks Amy. I appreciate your prayers. Tom came back yesterday to help again after we figured it is not contagious. I have somewhat adequate PPE for proven cases, but the problem is we do not know who has it and is contagious among people who do not have symptoms so are not using correct PPE for them. They are testing all admissions now, but it takes 1-2 days for the results so does not help until then. And many women deliver more quickly than that. Labor is very contagious. So terrified about getting the virus at work with these issues, especially on these medications. My hospital is doing a great job, but we are limited with medical supplies for PPE and testing which is limiting their response. I am sure they would love to have better testing and PPE so it is not their fault.

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  4. Yay for a diagnosis and several options for treating it. Boo for increased susceptibility during a pandemic. 😦

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  5. eliz martin says:

    Awe, Donna, The positive is You know have some kind of diagnosis to look for alternative thoughts and know what it isn’t…..the negative, is that it still sucks…I wish i could say poof, and You’d be free, but alas all i can do is give healing thoughts and hope Your better soon. PS there is alot of different types and strengths of canibis and i know a few folks where it has helped, but realize your job may test and not approve too…Please take time for yourself and Tom, work is necessary, but life matters….

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  6. Karen L White says:

    Donna, I am so sorry that you have this to deal with and especially at such a scary time with all Covid-19 stuff. I am glad that you have a diagnosis (as unpleasant as it is) and that you have a great medical staff on your team (including your caring and concerned dad). My prayers and wishes for a full and speedy recovery (even though a long shot) are headed your way. Take care and “Thanks” for taking the time to keep us informed!!

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    • Donna says:

      Thanks Karen. I do have a smart and kind Rheumatologist and of course a caring father. It is not a life threatening condition but is disabling, which I am not used to having to deal with. COVID-19 is life threatening though but I have adequate PPE to avoid that. I appreciate your prayers and wishes Karen.

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  7. Brandy says:

    Thank you for sharing this…. I just found out today that I have HLAB27 and ReA..Mine has been chronic on /off for about 4 years… Im not thrilled at the idea if trying the sulf….whatchamacallit.. Supress my immune system NOW oh sure why not🙄
    .

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    • Donna says:

      I am glad to hear from you Brandy. I was diagnosed Monday so we are in a similar boat. Technically my symptoms started in March but I have had symptoms for many years that could have been as well. That part is not clear. Suppressing my immune system right now is very scary particularly since my job puts me at risk of contracting COVID-19. But I am near completely incapacitated right now so I do not have a viable option. Unfortunately the high dose prednisone is not helping me at all that I can detect. So I am really hopeful that the sulfasalazine helps because otherwise we are going to be devastated. I am hoping you are not as incapacitated as me and can make an informed decision about what is best for you. My rheumatologist communicated that sulfasalazine and similar medications are concerning with COVID-19 but there is no good research yet if there is truly a problem. But we all, regardless, need to be extremely careful. But for me right now even more so.
      I would love to stay in contact with you. I have not found anyone with this illness to communicate with yet. There is a blog from a woman in Britain but her reactive arthritis seems very different than mine so I am not sure it is the same illness. This appears to be a rare disease so finding accurate information is a little challenging. If you would like to stay in contact you an email me at donnawh@earthlink.net.

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  8. FullyFleeced says:

    Glad you at least have a diagnosis- though its clearly not the best time to be on an immune-suppressing drug … so sorry you’re having to deal with this on top of the crazy pandemic.

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