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Unable to reduce meds, what are my choices please

Posted , 12 users are following.

julian99981
julian99981

Hello all.

I have been diagnosed with Polymyalgia for about 4 years and have been unable to reduce below 10mg and been warned that the long term effects of these steroids are very serious.

I'm seeing my rheumatologist in a few weeks time (who has been hopeless). Can anyone suggest what tests I should ask for as all I've had in this time is blood tests.

Also an injection of some sort has been suggested as a replacement to my prednisone has been suggested.

Many thanks

0 likes, 23 replies

23 Replies

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  • tavidu
    tavidu julian99981

    Posted

    Hi Julian. I have been on preds now for 3 years and like you cannot get below 11mg without extreme discomfort even using a very very slow method. I do have side effect issues but would rather deal with these and be pain free. We would all like to get off of preds but this can be a long process. I have a friend who also has PMR and has suffered with it for 12+ years now and has never been lower than 9mg with suffering so all we can do is stick in there and deal as best we can. The one major thing for me is what else is the preds covering up. I am currently undergoing CT scans etc for a patch on the lung that seems to have appeared after a chest infection and 2 reductions in pred, just wondered if the two could be linked. All the best.
  • EileenH
    EileenH julian99981

    Posted

    IMHO, the long term effects of pred are greatly over exaggerated and rarely compared with the long term effects of PMR! It is slowly being accepted by the good doctors that there are various versions of PMR and something up to one third of patients are still on pred after 6 years, some of them will remain on pred for life.

    Long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids by  M.A. Cimmino , C, Salvarani , P, Macchioni , R. Gerli , E. Bartoloni Bocci , C. Montecucco , R. Caporali for the Systemic Vasculitis Study Group of the Italian Society for Rheumatology

    I have had PMR for 13 years, I have been on pred for nearly 8 years. It took me over 4 years to get below 9mg. Luckily I have very sensible doctors who accept that I need what I need. And I have no signs of problems: no diabetes, I gained weight and lost it again, my bone density has barely changed in 7 years on pred, much of it at between 10 and 15mg.

    Are they suggesting you try methotrexate as a steroid sparer? It is available as both an oral version and as injections which avoid some of the side effects. This paper also shows that mtx doesn't change the pred-associated side effects even though for most patients it did reduce to total dose. Or have they funding to try tocilizumab/Actemra? Where are you?

    • EileenH
      EileenH

      Posted

      Forgot to ask - is your doctor confident about your diagnosis of PMR? And if he has been useless - can you not find one who ISN'T useless?

  • Michdonn
    Michdonn julian99981

    Posted

    Hi julian99981, I got down to 7 mg before my flare-up. Hope start reducing Friday. I try to think positive. Slow and easy, pay attention to your body.
  • amkoffee
    amkoffee julian99981

    Posted

    I found success in tapering by going .5 mg at a time and splitting my dose. I have no idea why splitting my dose makes a difference to my body but it is working so I'm am crossing my fingers and continuing that trend.

    • donna25417
      donna25417 amkoffee

      Posted

      I am on 7mg per day and split mine take in the morning and before bedtime and that helps my morning stiffness. 
    • Michdonn
      Michdonn donna25417

      Posted

      That sounds like an idea, try a bit before bedtime, take calcium around noon instead of at bedtime. I will give that a try tomorrow!
    • donna25417
      donna25417 Michdonn

      Posted

      I Just take 1mg at bedtime so not too bad and stiffness in the morning not bad at all and 6mg after breakfast . Hope it helps you to split yours 
    • EileenH
      EileenH Michdonn

      Posted

      It doesn't have to be bedtime - some people find taking it late afternoon/early even is late enough to still work next morning and has less effect on sleep. And if calcium helps you sleep (it does for some people) you can still take it before bed if there is 2-3 hours between.

    • Anhaga
      Anhaga Michdonn

      Posted

      Michdonn,what is the size of your calcium dose?
    • Michdonn
      Michdonn Anhaga

      Posted

      I take 120 mg of both calcium and magnesium
    • Anhaga
      Anhaga Michdonn

      Posted

      Just checking - if it had been one of those monster pills I hear some people are prescribed I'd have suggested smaller doses twice a day, but you are obviously doing this right! 

    • Michdonn
      Michdonn Anhaga

      Posted

      I try to do it correctly. Up until the flare up I was cruisine right along, since the flare up can not get moving. Legs are stiff and ache when I try to walk, did a little yard work yesterday, after which I was done. And not much better today. But the sun is shining, glad to be here!

    • Anhaga
      Anhaga Michdonn

      Posted

      I'm feeling fairly well these days.  Have concluded that a lot of my discomfort isn't anything to do with PMR, just the return of osteoarthritis aches and perhaps a measure of pred withdrawal as well as pred induced myopathy thrown in to complicate things.  Having the big 7-0 birthday looming this month isn't helping my frame of mind....  Have to keep telling everyone as otherwise I can't believe it.  Inside I'm still only three!

  • Flutterbie57
    Flutterbie57 julian99981

    Posted

    I am in the same boat. I was initially told 2 years and I should be over it. I have had 3 tries to get under 10 and I thought I was almost down to 8 this time - verrrry slowly. Then a flare up or a meltdown and I waited longer this time to see if my body would readjust. No it did not ! I am having my second anniversary on steroids this month so I am having a bit of a mental melt down now, or a 2 year old tantrum with myself as I have failed again. However it is suportive to hear from people like Eileen who reassure us that long term steroids will not totally destroy us. I am so pleased to hear that.   
    • EileenH
      EileenH Flutterbie57

      Posted

      There are plenty of people who take 10mg or so for life for other things - without disintegrating! Any doctor who tells patients they will be "over PMR in 2 years" should be had up for fraud. At the very least they should say "it will take AT LEAST 2 years and possibly up to 6" which would cover 75% of patients instead of only about 25%!

    • EileenH
      EileenH

      Posted

      PS - on the HealthUnlocked forum there are now at least 4 of us who have had PMR for 13-16 years, some have been on pred that long, I'm only 8 years and counting...

    • Flutterbie57
      Flutterbie57 EileenH

      Posted

      Thanks again Eileen. I have buckled under pressure and my expecctations were probably to high. I will show your answer to those around me too who can't understand why I am not back on track.

    • linda17563
      linda17563 Flutterbie57

      Posted

      I sympathise with you,and when you say about "those around you"  I am worn out trying to explain to people how I feel (when they ask) why I am still taking pred, why I can`t get any lower, why  I get side effects, when not everyone does.......and worst of all, and I`m sure they think I`m lying when I tell them there is nothing other than pred that I can take!....it is so wearing at times and does not help.rolleyes...good luck, hope you get back on track soon.......

    • Anhaga
      Anhaga Flutterbie57

      Posted

      I spend some of my time, on the rare occasions anyone asks me how I am, explaining about dealing with the effects of pred.  It's helped me, at least, to tell others that prednisone makes me very tired and I have much reduced stamina, although I do wonder how much others really "get" it.  I don't think one can really understand without having experienced it, that at a certain point the treatment is just as much a condition to be managed as the original disease!  

    • Rudivl
      Rudivl linda17563

      Posted

      Hi Linda - I too feel worn out trying to explain why, after 2 1/2 years I am still struggling with the same pains, PLUS the side effects of Pred etc.!  What upsets me is that family and friends have not even read up on PMR to understand what it is or how we experience it...... I know people just want us well again - my PMR came on within a matter of weeks (although I had some tendonitis for a while) and it is hard for them to adjust to our changes.  I have put on 2 stone in 6 months (and I eat really healthily!) and have a moon face - I look completely different.  It's tough!  Hope you all feel better soon and we can crack this! :0)

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