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Second week if steriod reduction

Posted , 14 users are following.

julia85224
julia85224

Hi, all,

Last week reduced steroids from 12.5-10mg,

and many of you kindly answered my questions as I was feeling quite ill.

Second week now and have had a bad headache, my Consultant doesn't think it is Gca, relief, but I explained the symptoms I had last week and he isn't convinced I have

Pmr.

He said reducing steroids from 12.5-10 should not make feel ill, and as my bloods are normal, he is going to take me off steroids quickly.

Totally confused.

I see him Thursday and I am not happy.

Please advise if you can, does anyone have similar symptoms to me when reducing, ie fatigue, aching, and unwell.

0 likes, 33 replies

33 Replies

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  • macas02
    macas02 julia85224

    Posted

    Hi, Every time I reduced steroids when I was on the higher doses I felt awful for a few days. Its been said so many times on this Forum that its not the results of the blood test that counts its how you feel and I would worry about coming off steroids too quickly.

    Hope you feel better soon

    Mary

    • julia85224
      julia85224 macas02

      Posted

      Hi,

      Thank you for you're reply.

      Very confused, my rheumatologist is quite adamant that I shouldn't feel the way I do when reducing steroids.

      We shall see.

      Hope you are well

  • ptolemy
    ptolemy julia85224

    Posted

    I am sure  that the majority of us have had fatigue, aching and felt rough at some time in our PMR  journey. Fatigue is actually a symptom of PMR and also a fluey feeling. The pain goes without saying. Reducing steroids can also have a similar effect in the first day or two of reduction. Perhaps your consultant should try steroids for a few months and reduce.

    As a rule of thumb a reduction of a maximum of ten per cent at any one time is recommended.

    Have you ever had raised blood markers, about twenty per cent of people do not?

    • julia85224
      julia85224 ptolemy

      Posted

      Hi,

      Thank you for you're reply,

      I agree I think he should try steroids, reduction is not nice.

      I am having another blood test tomorrow, beginning to feel like a pin cushion, my markers are always or have been normal.

      See what he says when I see him on Thursday.

      Hope you are well.

    • margaret22251
      margaret22251 julia85224

      Posted

      Hi my rhmy said the best way to reduce is slowley, ans she was so impressed with the DSNS method she took a copy for her patients.

       

    • faye______00403
      faye______00403 margaret22251

      Posted

      Better stick with that guy.....one that maybe understands how

      this works.....not many of them do.  The advice from the

      docs are all over the  place.....that's why this forum is such

      a help to all of us.....

  • fran2498
    fran2498 julia85224

    Posted

    Hi Julia, So sorry to hear that you are still feeling unwell. I don't know what to advise really except that because of all I've learned on this forum I think it would be extremely unwise to come off the steroids very quickly as your Consultant suggests. Is this your GP or a Rheumatologist? Each time I've reduced, I'm now on 10mg like you, I have felt more tired and achy for a few days, and since reducing to 12mg (I originally started at 20mg) I have always felt a certain amount of acbing and stiffness first thing which eventually goes away after 2 to 3 hours. It would be nice to be completely pain free all the time but I am loathe to go back to a higher dose when I can cope as I am. I do still get very tired from time to time but am learning to cope with that too and pace myself accordingly. However, I wouldn't say that I have ever felt unwell as such and certainly haven't experienced any headaches. Maybe you haven't got ONE but I guess of you do come off the steroids quickly and all your pain and stiffness returns, you'll know one way or another. Sorry not to be of more help. Hope you get something sorted soon.

    • julia85224
      julia85224 fran2498

      Posted

      Hi,

      Thank you for you're reply,

      My rheumatologist is adamant that I shouldn't be experiencing these kind of symptoms, fatigue etc, when reducing steroids.

      I have had the same symptoms every time I reduce.

      As you say it lasts for a few days, and this has happened again, he wants me to come off the steroids as quickly as possible.

      That I am not looking forward to, then if symptoms of pmr come back, I will have to start this nightmare all over again.

      Time will tell, I will see what he has to say on Thursday.

      I would rather have the facts and knowledge from this forum and people dealing with this, than that of a consultant no matter how qualified who does not have this condition.

      Hope you are well

    • jeanne333
      jeanne333 julia85224

      Posted

      My RA felt the same way, he had me reducing to fast. I started with 20mg last Dec, I had a couple of flares, and ended back at 20mg. He wanted me to reduce 5mg emery other week, way to fast. Then I told him about this forum and the reccomened reduction rate, he now lets me do it at my pace. I just went to 19mg, 2 days ago, after 8 weeks at 20mg, I will give it 4 to 8 weeks before I reduce anothet 1mg, depending on how I feel. Hang in there, it is a long haul, for sure.
    • fran2498
      fran2498 julia85224

      Posted

      Well he's wrong about the fatigue isn't he because it would seem that we've all experienced it. It seems that most GPs/Rheumatologists don't really understand the condition at all! Having said that, my GO is very understanding in that each time I see him he asks me what I would like to do and is quite happy for me to reduce as slowly as I want to, on the other hand he would be just as happy for me to go more quickly but certainly wouldn't push me to do so. II'v

    • fran2498
      fran2498 julia85224

      Posted

      Sorry pressed reply before I'd finished. Was going to add that I've told him I've joined this forum and he thought it was an excellent idea. Hope you get some satisfaction when you are your Consultant on Thursday.

    • faye______00403
      faye______00403 julia85224

      Posted

      Can you see another Rheumy?   If this guy doesn't know that

      fatigue is a big factor with PMR you need a more informed

      doc......

    • jeanne333
      jeanne333 faye______00403

      Posted

      I agree .. he has no clue about PMR and it's symtoms.. Good luck on educating him ..

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