Glo’s story

In 2017 I was diagnosed with Polymyalgia Rheumatica, then with RA and Osteoarthritis plus diabetes. This year I developed Giant Cell Arteritis which can cause blindness. Treatment is, of course, massive amounts of Prednisone. Taking me down has made the RA rampant. Pain is unbearable. Anyone else have these multiple problems?

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Comments

View Comments (7)
  • Glo author
    2 weeks ago

    I am also on methotrexate .07 by injection weekly. Taking insulin for diabetes. Learning how to cope with multiple problems. And yes I have to see several different specialist, Hematologist, Pulmonary Dr, GI DR, Opthalmologist, Endocrinologist, and Internist. Thankful for all of them and the Good Lord!

  • Casmere
    2 weeks ago

    Hi Glo, I have had RA for almost 50 years. This past year diagnosed with first Fibromyalgia, a year ago then last July they added Polymyagia Rheumatica. I have been on and am currently on prednisone. You do not and should not have to endure that amount of pain. Speak to your doctors. There is a plan they follow and or advise you to follow. If you have a bad flare after reducing the med then you are suppose to go back up to the previous dose. Also if it is that bad then they change how long on one dose also reduce the amount you reduce by.

    I currently, which started in Oct 2018, am on a dose for 1 month then reduce by .5 mg’s the next month and so on. I realize it means you are on prednisone longer but is a lot better then having dibilatating pain. This time around I started on prednisone in July 2018. So its going to be at least 2 years my doctor says. Also i know a commentator on here, Daniel, hasn’t been able to get off prednisone completely for years.

    I sure hope this info helps you and that you can get in to see your doctor or at lease talk or message to him/her.

    All my prayers and best to you

    Casmere (Carol Bonham)

  • Glo author
    2 weeks ago

    In October I hemmoraged from colon. Almost died. In hospital for 10 days and had blood clots in lungs. Couldn’t take blood thinners because of bleeding. I am home with 325ml aspirin. Doing much better now. RA seems to be in remission. Still on 20 ml Prednisone. I stopped doing the infusion Actemra as one of the side effects is uncontrolled bleeding. Right now I have pluricy which Is painful. Had a CT scan last week which didn’t show any blood clots. So thankful. Drs. are considering inserting a filter to protect my heart and lungs. Thanks for all the comments. Looking forward to a better 2019!

  • Daniel Malito moderator
    4 months ago

    @glo Co-morbidities, what a solemn, serious name. If they wanted to make us feel better about ourselves, they failed, miserably. Unfortunately additional ailments and condtions are part and parcel of autoimmune illness. For me, my doc once told me 30 years of RA was like 30 years of smoking and drinking, with reprocussions all throughout the body. Also if your pain is getting to the point where you cannot bear it maybe it is time to find a pain specialist? It made my own quality of life much better when I did that. Keep on keepin’ on. DPM

  • Mafalda
    4 months ago

    Unfortunately, it is all too common to have several co-morbidities. These autoimmune diseases truly enjoy ‘company’.
    I was diagnosed with RA/RD and Fibromyalgia in 2015, after complaining for 14 years to no avail. Before that, it was found that I had Rosacea and Raynaud’s. A couple weeks ago I was also diagnosed with Pseudo Gout (deposits of calcium crystals in the joints). My problems have been unsuccessfully treated so far, and the Pseudo Goup only adds to the pain, exhaustion and and inflamation. I’m bracing myself for more diagnostics to come….
    I wish you all the best and a lot of patience, we all need it.

  • Monica Y. Sengupta moderator
    4 months ago

    Hey Glo! I am so sorry you are dealing with these diseases all together.

    I thought I would share this article about the different co-morbidities that are possible (but not exclusive) with RA.

    I, thankfully, only have Sjogren’s on top of my RA. I hope others chime in with their experiences.

    Do you have to see multiple specialists for each condition or just a rheumatologist? ~Monica

  • Richard Faust moderator
    4 months ago

    Hi Glo. Sorry to hear you are struggling. Unfortunately, RA (like autoimmune conditions in general) is prone to comorbidities. This article from one our contributors discusses comorbidities and her experience with some of them: https://rheumatoidarthritis.net/living/would-like-something-with-that-maam/. You mention giant cell arteritis, which is also an inflammatory condition and thus at higher risk of comorbidity. Polymyalgia rheumatica is as well. This article on types of arthritis discusses both these conditions: https://rheumatoidarthritis.net/types-of-arthritis/. Hopefully, since these are all inflammatory conditions your doctor can coordinate some sort of treatment regimen. Wishing you the best. Richard (RheumatoidArthritis.net Team)

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