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Is it a flareup or prednisone withdraw?

Posted , 14 users are following.

mirella60121
mirella60121

Hi all

2 years ago I was sort of diagnosed with PMR or LORA

My esr and cpk were extremely high yet my ANA,s were normal. The symptons were extreme pain in my arms legs and feet with stiffness. Started on 60mg prednisone which did give relief then slowly overtime started to reduce. During this time was still not given a proper diagnosis as the rheumatologist was not convinced it to be pmr due to age as was in late 40s at that time. After extensive tests for literally everything under the sun never had so many scans etc in my lifetime, was not able to find anything else.

During the reduction process was placed on methotrexate 25mg for 10 months. This didnt agree with me at all so came off them approx 4 months ago. Also started approx 3 months ago on a biological agent injection (simponi). Slowly started to reduce the prednisone down to 3 mg for quite sometime. Now in the last 3 weeks have completely come off them but still on biological agent. The first week I felt okay come the second week now 3rd i am in excruciating pain in my legs feet especially and the arms. Not only the stiffness but the hot burning type pain in lower legs.

When i went back to dr to advise he seemed to believe that i am much better as the blood work seems to respond to the biological agent.

I guess after my long winded story. Is this normal when prednisone is completely out of one,s system or could this be a flare up?

Mimd you the Dr still believes this to be rheumatoid arthritis but I have always believed it to be PMR. I dont have sore joints.

Should I go back on prednisone even though dr happy that I am not on them anymore due to lot of other side effects given or just wait it out and how long. I can not cope with this pain can not sleep at night as the sheer touching of my legs i scream with pain.

I do work a lot and have lot going on personally. Trying to sell the family home. Have 3 daughters still at home. Lot and lot of stress.

Would appreciate any feed back.

1 like, 24 replies

24 Replies

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  • daniel08939
    daniel08939 mirella60121

    Posted

    My rheumatologist told me that I did not have pmr. I went to another doctor and she put me on prednisone. I got total pain relief in less than one hour. I am now back with my rheumatologist and he says I do not have pmr but if prednisone works, so be it. He writes presciptions for prednisone and tells me to let the pain be my guide to the dose. I am now at 4.5 and plan to go to 4.0 in one week. I have been reducing 1/2 mg per month but I feel that may be too fast from 4.0 mg to zero.
    • Anhaga
      Anhaga daniel08939

      Posted

      And, Daniel, did this rheumatologist ever tell you what was causing your pain, the pain which he says isn't PMR? idealol

  • susan29426
    susan29426 mirella60121

    Posted

    No one should have to bear that much pain. My heart goes out to you. By all means, get back on prednisone and see if it helps. If it doesn't - more tests, more scans I guess. Best wishes.

    • mirella60121
      mirella60121 susan29426

      Posted

      I really am reluctant to go back on prednisone but if this pain doesn't subside then guess have no choice. Having more scans and tests been down that road. Cant tell u how many i have had in past 12 months. Too many to count. Guess i have not a definitive answer as these docs dont believe in pmr in patients under 50. Why have no idea. Still believe i do.

  • amkoffee
    amkoffee mirella60121

    Posted

    I think the pain you're feeling in your legs and feet could be nerve pain or referred pain. You don't happen to be a diabetic are you? I only ask because this can happen to people with diabetes too.

    I wanted to tell you also that I am sort of in the same boat as you. I was originally diagnosed with PMR over a year ago and I got on Methotrexate but had to get off of it too, just like you did. And my pain in my hands and my feet and my lower legs it was not getting better but the PMR pain was responding well to the prednisone. My RA blood test was negative so my rheumatologist didn't know if I had rheumatoid arthritis or PMR or both. But just about 3 weeks ago I had an MRI on my right hand which was my worst place. And it showed inflammatory arthritis. I believe I have both at this point. And it is very possible that you do too. The difference between you and me is that I like my rheumatologist and she is really very on top of things.

    • mirella60121
      mirella60121 amkoffee

      Posted

      So i thought inflammatory arthritis and rheumatoid arthritis is the same thing? So what is your current treament plan for yoy?

      Is it helping you? No I am not a diabetic thank God. I am just not sure whyi am in so much pain and stiffness in my legs and feet.

      Appreciate your feedback helps a lot

    • EileenH
      EileenH mirella60121

      Posted

      RA is an inflammatory arthritis, not all inflammatory arthritides are RA. 

      Arthritis is an inflammation of the joints that can cause debilitating joint pain. There are more than 100 different kinds of arthritis and related conditions.The three most common forms of inflammatory arthritis are: rheumatoid arthritis. ankylosing spondylitis. psoriatic arthritis.

       

    • EileenH
      EileenH mirella60121

      Posted

      In the early stages it is particularly confusing. There are tests that make one more likely than another and later there are results that can be seen on imaging - x-ray, MRI, ultrasound. But there can be overlaps in signs and symptoms to confuse the picture. Joint damage is a often a relatively late thing and otherwise the medications are much the same whichever it is at first. Now there are biologics it is more important to know which is which but sometimes it is a case of trial and error - this doesn't work, maybe this one does. 

      There are rarely certainties in autoimmune disorders - of whatever sort.

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