blood tests didn’t show that i had RA…..

It wasn’t until I had the Olecranon bursa removed from my left elbow and they did a biopsy of it that the histology showed that without a doubt I have RA. None of the blood tests show that I have RA, even till this day, which is frustrating. But, I understand that it’s not so unusual. I’m grateful to have had a wonderful rheumatologist. (I say “had” because he unfortunately passed away. I’m starting with a new one and I hope that he’s as good.) I’m on MTX and plaquenil. My rheumatologist tried adding salazopyrin, but it turns out that I’m allergic to it. I did all the tests required before starting biologics (for my old Dr, RIP) and hope that the new Dr puts me on them (probably Enbrel). Unfortunately, the MTX gives me severe nausea; I believe that you continue with MTX while on biologics. The worst is the pain when trying to find a comfortable position to sleep (non-existent! It hurts no matter WHAT position and how many pillows I try!) And the pains and stiffness in the morning. The RA also makes me feel very fatigued, not fun! But, I keep reminding myself that things could be worse and that I should be grateful that it’s not.

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Comments

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  • Erin Rush moderator
    1 year ago

    Hi suri613! I am sorry you are dealing with pain and fatigue! Unfortunately, I know that many of our members can relate! Pain and fatigue are really common RA symptoms. As far as the struggle to get quality sleep, I thought you could relate to this article — https://rheumatoidarthritis.net/living/the-pillow-queen/.

    And, you probably already know this, but quite a few of our members have been diagnosed with seronegative RA, which may be what you are dealing with as well. There is a bit more about it here — https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/.

    I am so sorry for the loss of your rheumatologist! How sad for everyone that knew him. I do hope the new one is a good fit for you and works with you to find the best treatment options for you and your health.

    Thank you for sharing and I hope you can get some good nights’ sleep this week!

    Best, Erin, RheumatroidArthritis.net Team Member.

  • Indigo2
    1 year ago

    Yes, after dealing with joint damage, pain & suffering I saw another Rheumatologist who changed my diagnosis from Osteoarthritis (starting at age 40) to seronegative RA, which is a completely different treatment. I am hoping to feel better than I have but the joint damage from 20 years is here to stay, I am 60 years old now & after a life of taking care of others, I am isolated & on my own…these are not my “golden years”, I am afraid of what will come.

  • Monica Y. Sengupta moderator
    1 year ago

    Hi Indigo2!

    I am so sorry you are feeling scared right now but I understand it and you’re not alone. Many in our community feel the same way and I myself am very scared and unsure of what my future holds.

    I saw you mentioned feeling isolated from everyone and I thought you might like this article: https://rheumatoidarthritis.net/living/invisible-illness-invisible-friends/ I re-read this article when I’m frustrated with people and feel lonely.

    Please continue to reach out, our community is always open! Warmly, Monica (RheumatoidArthritis.net Team)

  • suri613 author
    1 year ago

    hi erin, thanx for the links to the articles. i can surely relate to pillow queen! besides a pillow under my head, i place one between my knees and some cushioning between my feet to lessen the pain. (i sleep on my side. too painful to sleep on my back and way too much shoulder pain if i sleep on my stomach!) can’t seem to alleviate the shoulder pains, even though i rest my upper arm on a pillow. sometimes i switch sides multiple times a night to whichever side gives me less shoulder pain. i find that my hip/thigh also hurt from lying on the side. i know that fatigue is one of the RA symptoms, but i’m sure it’s exacerbated by poor quality sleep! (by the way, i take circadin before bed, which is a slow release prescription only form of melatonin. it used to be more effective before the pains got worse.) i also want to thank you for sending the link to the seronegative RA blood tests. i guess that would be me! interesting that in such a high percentage of RA patients the blood tests are negative.

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