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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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  • EileenH
    EileenH mirella60121

    Posted

    I think you need a doctor who might know what they are talking about when it comes to PMR - because I'm far from sure he does. ANA is very rarely raised in PMR and it isn't considered  criterion (that is lupus I think). 60mg is far too high for PMR - it is fair to say a LOT of things would respond to that sort of dose. 

    " but still on biological agent" - unless it is tocilizumab/Actemra it won't work in PMR. Your rheumy seems seriously confused about what he thinks you have and isn't being very logical. I'd go so far as to suspect he's been making money out of your insurance company. But then, I'm of a very suspicious nature!

    If you have PMR and it is still active, once you stop pred the symptoms will come back. All pred does is manage the symptoms, it isn't a cure, and you have to keep taking it at a low dose. 

    You need a doctor who will treat the patient - not the lab results.

    • mirella60121
      mirella60121 EileenH

      Posted

      I agree with you Eileen. I am in Sydney Australia. My rheummy is supposed to be on of the best here in sydney. The problem and confusion is he believes it is LORA where I always believed it to be PMR.

      I have been reading your forums for 2 years now. I am just fed up with it all. I would prefer a proper diagnosis as u say based on symptons. I have always had hugh esr since I cam remember. Seemed to be the norm for me. But have finally got it down still not low enough.

      I guess Eileen I am asking would it hurt to go back on say 3mg see if these symptons sub side?

    • EileenH
      EileenH mirella60121

      Posted

      There is no reason why even a higher dose would do any harm - but how will you get it?

      In terms of PMR doses there is little worry about long term. Look at this link

      Polymyalgia Rheumatica and Steroid Side Effects: New Findings

      in this post:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      If low dose pred deals with your symptoms then this study suggests it is probably safer than the biologic he is happy to have you on which ISN'T doing much except for the lab results. I don't care what my ESR is - I do care what my symptoms are doing! Like Jibber, I am grateful that I have doctors who treat me, not the blood results. Like Jibber - I do my own research. 

    • Silver49
      Silver49 EileenH

      Posted

      An interesting article. Before my diagnosis and commencing on steroids I was advised that I have cataracts. I had an eye test about 10 days ago and was told I have very mild cataracts. They have not progressed since I started on prednisolone 2.5 years ago. 
  • BioMedGeoff
    BioMedGeoff mirella60121

    Posted

    Hi Mirella

    I agree with Eileen. I am a 69 year old male and have had PMR for 12 years. My GP and Consultant have been brilliant throughout. Prior to diagnosis I had an MRI, CT Scan and a whole host of bloods. The diagnostic dose of prednisolone confirmed PMR. My doctors haven’t done any further blood tests. The three of us agree that you should treat the symptoms not the pathology.  As a retired Biomedial Researcher I guess I have an advantage. I read many peer review articles every year and evidence shows that blood test results are not necessarily elevated in the case of PMR.  I suggest you seek a second opinion. Diagnosis of PMR is not easy or straight forward. Good luck. 

  • lilian05079
    lilian05079 mirella60121

    Posted

    Hi mirella60121

    When i came off preds i had no pain for 2-3 weeks and then i felt like i'd been thrown under a bus..most of the pain was bone pain caused by the preds..i stuck it out and it gradually went away after about 3 months. I have since been diagnosed with osteoarthtitis and shoulder bursitis for which i am being treated and the bursitus pain has gone due to having a cortisone injection..osteosrthritus is managed well with paracetamol and tramadol which i take only when i need to. The pain is mild most of the time a bit more painful in cold weather....i preferred to stay off preds due to awful side effects...i'm fine now and feel myself again.....i send my best wishes to you mirella60121 in whetever you decide to do......

    • Anhaga
      Anhaga lilian05079

      Posted

      I think I've asked you before, but maybe not.  Lilian, how do you know you got bone pain from pred?  Is that one of the listed side effects, I must have missed seeing it?

    • lilian05079
      lilian05079 Anhaga

      Posted

      Hi Anhaga

      I read some time ago in a medical journal or book can't remember which. After steroid therapy some patients present with joint and musculaskeletal pain/arthralgia. This is caused by lack of natural cortisol production due to suppression of the adrenals by the steroids. Also Avascular Necrosis AVN destruction of bone is caused by steroids in some cases. When presenting with joint and musculaskeletal/arthralgia pain after withdrawal of preds, excessive physical stress and activity is to be avoided until the pain subsides. This is the course i took and the pain eventually subsided. When i was presenting with the pain i took magnesium, boron, calcium and Vit D to strengthen my bones.....11 months on so far so good...my best wishes to you Anhaga....

    • Anhaga
      Anhaga lilian05079

      Posted

      Thanks.  Very interesting.  Glad things are improving for you. smile
    • Guest
      Guest lilian05079

      Posted

      Hello Lilian, very helpful. Perhaps the reduction in steroids result in recurrent inflammation of OA for some and thus more painful joints. I wonder how many people think it is a flare and mistakenly put their steroid dose back up as a result !

      Encouraging to hear of someone who 'came out the other side'   Thanks for you input

    • lilian05079
      lilian05079 Guest

      Posted

      Hi Clare1001

      That was always my way of thinking after reading about joint and musculaskeletal pain after steroid therapy....when tapering my thoughts were as you just stated....if experiencing pain when tapering..... the pain could be the MSkeletal pain that steroids cause according to what had read..so why up the dose and prolong the agony by making the pain worse.... just tolerate the pain and get off the preds and wait until the pain subsides...which it eventually did..i am living proof of that...it is comforting to know someone else thought along those line...my very best wishes to you Clare1001......

  • Kassiebeetle
    Kassiebeetle mirella60121

    Posted

    Hello mirela. Why don't you go back on pred to see if you do get relief. Your Rheumy is a bit off the mark. Doesn't*t seem to be listening to you. Your blood tests don't*,t necessarily reflect how active the PMR is. It is symptoms. And response to pred. See how you go. All the best.

    • mirella60121
      mirella60121 Kassiebeetle

      Posted

      Yes i think i will not sure what dose. I have plenty subscription for prednisone. 5mg and 1mg. As Eileen says treat the symptons.

      I was so looking forward to coming off the steroids mainly for the weight gain. Has been so depressing seeing how much i have gained since on this roller coaster. Yet i dont sit still. 2 jobs work more hours than being at.home. never expected my life to change so dramatically these last 2 years. Also costing me my marriage. 3 daughters can't comprehend what one feels. They look at you as constant nagging about my pain. Oh well i do thank god for this forum as when i dont.sleep at night this keeps me going.

      Thank you all for the valuable info. Stay tuned

    • EileenH
      EileenH mirella60121

      Posted

      Cutting carbs really can help the weight problem with pred - I lost 35lbs while still on between 10 and 15mg pred and so have others.
    • mirella60121
      mirella60121 EileenH

      Posted

      Perhaps i really need to change a lot of things diet being the first thing and mindset secondly.

      Guess I just wish there was one title for what I have and be treated accordingly. Frustrating that 2 years have passed and still not really knowing.

      Appreciate always your valuable knowledge Eileen

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