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Doctor weaning me off steriods

Posted , 9 users are following.

ginette1977
ginette1977

Hi everyone just a update I went back to doctors after being up to 15mg of pred I told her that the pred had helped but not fully she said that my blood tests did not show that I had pmr she said the pred should of got rid of all the pain so she is tapering me off the steriods she thinks it's fibromyalgia that I've got so I have to wait to see the specialist again so I'm really fed up now I've just had a operation on my nose as well so I'm in pain with that and my muscles feel sore again😒

1 like, 37 replies

37 Replies

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  • Daniel1143
    Daniel1143 ginette1977

    Posted

    First of all, listen to Eileen. Then wait five minutes and reread what she said. 

    You might very very well have been under prescribed at 15mg to start.  Many of us - most I might observe - started at 20mg.  Beyond that if she is "weaning" you off at that rate, you will most definitely be pain.  That's like landing an airplane by heading nose down into the earth. At the present time, I am tapering at a rate of 1/2 - 1 mg per month.

    And finally, if she told you that you cannot have PMR because the blood tests didn't show it, find a new doctor.  I am one of the many on this site that never had elevated markers.

    Sorry to be so blunt, but I suspect it's what you need to hear. 

  • amkoffee
    amkoffee ginette1977

    Posted

    I just wanted to address your nose surgery. I too have had nose surgery and wanted to say that oh my God it is painful. At least while the packing is in the nose. Once the packing was removed i was very much relieved. So you have all my sympathies. To have to deal with nose surgery and PMR symptoms is unbearable. I'm really sorry for you that you have to deal with all this at the same time.

  • ptolemy
    ptolemy ginette1977

    Posted

    Ginette, I am so sorry you are in so much pain. I cannot think of a suitable word for your doctor, whatever it is it is probably unprintable. Taking pred for PMR is not like taking an antibiotic for something which then cures the problem, doesn't she realise that? The fact that your blood test for inflammation markers is now normal means that the pred is doing its work, not that the PMR has gone away. For goodness sake it is not rocket science. I cannot believe where some of these doctors pick up the rubbish they come up with from. 

    • ginette1977
      ginette1977 ptolemy

      Posted

      hi ptolemy thankyou for your reply just let you know my blood tests have never showed inflammtion which is frustrating this is why my doctor doesnt think its pmr.
    • ptolemy
      ptolemy ginette1977

      Posted

      Around twenty per cent of people with PMR do not have raised inflammatory markers, ESR and CRP. So having normal results does not confirm that you do not have PMR. It does seem to confuse some doctors though. If other things have been discounted and pred works magic on the pain the chances are it is PMR. I would ask for the results though. My GP said my inflammation markers had gone down and it turned out they had gone up! 
    • Anhaga
      Anhaga ginette1977

      Posted

      With exactly the same test results one gp didn't even mention the possibility of PMR and another thought at once it could be the problem, ran the tests again, and a few others, and had me diagnosed and on pred within a week.  Apparently my inflammation markers were not unduly high "for my age" which simply means as far as I can tell that older people tend to have more things wrong and therefore run slightly higher inflammation markers - desn't mean it's healthy!  And I think it's been said that something like as many at 20% of PMR sufferers do not show high inflammation markers.

    • EileenH
      EileenH Anhaga

      Posted

      It used to be thought that up to about 35-40 was OK in older patients - then it was realised that they had raised levels because there was something wrong (probably mild PMR) that was leading to raised levels in many older people). It has now been accepted that anything over about 20 is a sign that there may be a subclinical disorder going on. But there are still doctors out there who will work on the old guideline of (age plus 10) and divide the whole by 2 for women, age divided by 2 for men. 
    • linda17563
      linda17563 EileenH

      Posted

      This has always been the biggest puzzle for me in the 5 years pf having PMR...(or have I?) why doctors and rheumies all have different opinions....this is terrible for patients, why can`t they be made to follow a protocol like other illnesses?  as I have posted, from Jan 1st, I have to drop 5mg per week! (terrrified, but no choice really)  the rheumie I sae (second opinion) said I will know what`s going on when you get down to 5mg (adrenals I`m assuming) and then said, you`ve never had very raised markers anyway.....by then I just couldn`t be bothered to query that (have since come down with pneumonia (responding well) My GP said steroids had lowered my immune system....couldn`t argue with that one....All so frustrating! 

      Got phone call from researcher to be involved in Vasculitis research, which she said would at last help patients get correct diagnosis( to which I agreed)......in how many years time though I wonderrolleyes

    • ptolemy
      ptolemy linda17563

      Posted

      I am afraid it is not just PMR where doctors' opinions disagree, it happens across the board as far as I can see. Read about fibromyalgia for example or even cancer! Also some doctors are not that knowledgable about PMR.

    • amkoffee
      amkoffee EileenH

      Posted

      I had raised markers and a low grade fever and no pain that I knew of but some pain may have been hidden by my opiate I take for my back. That went on for a year before the pain effected me.
    • EileenH
      EileenH amkoffee

      Posted

      All sorts of things can be sub-clinical for a long time before they cause symptoms - but markers can be raised if they happen to be checked. But who gets ESR/CRP checked for no reason?

      And as ptolemy says - they never agree! Take 5 doctors and you will probably get at least 6 different opinions! It would be easier if there were a proper unequivocal marker - but then you'd have sero-negative patients so they'd still disagree...

    • amkoffee
      amkoffee EileenH

      Posted

      You're right who just checks with no reason. The only reason why it was checked is because I was running a low-grade fever for no apparent reason. And the only reason I even knew that was because I went in to have an injection in my back and they took my temperature and refused to do it because I was running a fever. We could never find the reason and since I wasn't feeling bad we just dismissed the whole thing. And it was actually just my sed rate that was elevated at the time. When I did come to him with pain my sed rate was still elevated and this time so it's my C-reactive protein. Which made it obvious what the problem was.

    • EileenH
      EileenH amkoffee

      Posted

      Even more - who checks them when we are healthy? Which is what really might provide some relevant information - my ESR is normally about 4 and never budges, however ill I am.  My neighbour may have a perfectly normal ESR of 20 - without signifying anything wrong. 
    • linda17563
      linda17563 EileenH

      Posted

      So why dosen`t this register with the medics.....if we are aware of it?? 
    • EileenH
      EileenH linda17563

      Posted

      I'm aware of it because I worked in the field and know a bit more about normal distributions and stuff than a lot of medics, especially GPs. And PMR/GCA are my specialist subject - they have to know about a load of things. What annoys me is when they don't check things - these days it is really easy...

    • linda17563
      linda17563 EileenH

      Posted

      When I went for my second opinion, I did prefer him to the rheumie before (who wouldn`t allow me to speak!) but when he told me to reduce at 1mg per week, he must have seen how shocked I looked, I said that`s very fast considering how long I have been on them....I said even when I reduce on the very slow method .5mg every few weeks I still get pain, he said that`s far too slow....where did you get that idea from....I said I go on Patient UK, he said they are not doctors and experts, I replied they are doctors that have suggested this method....

      ​Don`t go on any websites he said (like they all do)....to which I replied, they don`t profess to be doctors, but I would rather take advice from others that are going through what I am, and have found some answers, because in 5 years I haven`t had any from the hospital!........

      ​If you have any suggestions Eileen, or have known anyone that has had to lower pred as quickly as I will be starting next week (from 10mg...down to 5mg in 5 weeks!) I would be happy to know what will help (if there is anything that is)....Thank you

    • EileenH
      EileenH linda17563

      Posted

      The slow way is really for people on pred for PMR to make it easier to decide whether you have steroid withdrawal pain or it is a flare and to find the right dose more accurately. The rheumatologist in the north of England who is doing a study says she has had very good feedback from patients so far - they all have said it is the best way they have tried for feeling il.

      If you have to reduce quickly so a doctor can see what you are like without pred - there is no way round it really, you have to bite the bullet and put up with the pain for a while. There are a couple of people on the forums who have had to do it - and found it actually wasn't as bad as they expected. If what you have is not PMR then it is a bit different anyway - the returning pain will usually respond to pain-killers as it has a different cause.

    • linda17563
      linda17563 EileenH

      Posted

      Thank you once again Eileen....I will put it out of my mind for the week or so, and try and enjoy Christmas....as I hope you will too!....smile

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