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How do YOU decide whether and how much to change your dosage?

Posted , 23 users are following.

philoso4
philoso4

Ultimately each of us makes the final decision about changing or not changing our dosage of prednisone. I want to learn how YOU decide.

For example, do you tolerate stiffness so long as it doesn't cause "too much" pain when getting out of bed? Or do you take enough prednisone that there is NO pain associated with standing up off the toilet?

What do you consider to be symptoms of "too much" prednisone?

Do you base your decision on laboratory measures in any way? 

Or do you simply follow your physician's orders?

6 likes, 80 replies

80 Replies

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  • snapperblue
    snapperblue philoso4

    Posted

    We are all different and (as far as I can tell) PMR varies all over the place.  But we all face the same dilemma- (1) take more prednisone, have little or no pain, but face adverse effects of pred or (2) take less pred, put up with some pain, and know that you have chronic inflammation.  

    If you keep the pred dose low enough that you have pain, you know you also have inflammation.  I have decided that I am more afraid of chronic inflammation than I am of prednisone.  I take enough pred so that I have essentially no pain.  I have no pain getting out of bed, standing from a seated position, etc.  

    When I started (last January), I needed 25 mg to control the symptoms.  I was on that dose for 3 months (partly due to stress of traveling), which was worrisome.  However, since then I have been steadily reducing and am now at 7.5 mg.  This is much faster than the recommended very slow reduction.  If I have any pain, I go back to the higher dose for a while, and have not had any problem with raising and lowering the dose.

    In the short term, I don't have bad effects of the prednisone except chipmunk cheeks and buffalo hump.  I had an injected treatment to protect my bones, since I already had osteoporosis.  I don't know if there will be long term problems.

    So, for me, keeping the inflammation down seems to work, keeping me pain-free while allowing a relatively fast reduction (so far). 

    So, what should you do?  I have NO IDEA.  What is working for me is different for what works for most on this forum, specifically from Eileen's recommendations.  Eileen REALLY knows her stuff, so I hesitated even to post this.

    One factor that may be helping me is that I had myself infected with a small number of hookworms, which helps with many autoimmune disorders.  Because PMR is so variable, I will never know whether this helped the PMR or not, but I hope it will help more general chronic vascular inflamation.

    • noninoni
      noninoni snapperblue

      Posted

      Wow, you did it.  I remember our discussions earlier.  Now that I had a flare so bad it went to my lungs and I couldn't breathe, I much prefer prednisone to a flare like that! A really bad flare like that can kill, and I had never appreciated that before.  Do tell us how more about your small number of hookworm therapy.
    • snapperblue
      snapperblue noninoni

      Posted

      I have sent you a private response.  You can get it by clicking on "messages: under your name at the top right of the page.  
    • philoso4
      philoso4 snapperblue

      Posted

      Well.... I guess a bit more unguarded response would be that my PMR has not been so incapacitating that I would consider having a hookworm investation.
  • tony09890
    tony09890 philoso4

    Posted

    I have no idea what to do. Since my dose was increased to 25mgs I have only wrist pain which makes it difficult to open doors, slice bread or do anything else that places pressure on the wrists but, as long as I don't overdo it during the day (max 1 hour in my workshop) I have virtually no pain at night or in the morning, except for wrists of course.
  • susan91476
    susan91476 philoso4

    Posted

    I am glad to see this conversation - I haven't been on prednisone too long (since June) and my dosage has been reduced to 10 mg daily - I have just now started feeling some stiffness and and pain when getting out of bed - but since I am seeing other issues, I am inclined to try to "suffer through" in order to reduce the dosage -
    • ptolemy
      ptolemy susan91476

      Posted

      Susan whatever you do don't suffer through whatever you do, I tried that and it was a disaster. The PMR will rear its ugly head and take over, you may then be forced to increase your dose of pred to get the inflammation under control. You need to be on a dose that manages the pain, PMR is not a short term condition. It will not go into remission until it wants to. 
    • Anhaga
      Anhaga susan91476

      Posted

      Listen to Ptolomy!  I too started in June (at 15 mg).  And it was at 9 that I ran into troube - that was in August, I think.  But using the slow method I am at 8 now.  I had expected to be all finished by September - my doctor neglected to tell me that I wasn't cured, that only my symptoms had been dampened!  Now I have learned to look after myself and just take each day, step by step.  I can't rush getting off the pred although I would dearly love to, and I know you do too.  The best we can do is look after ourselves the best we can.  That is the only thing that will hasten our true recovery.
    • ptolemy
      ptolemy Anhaga

      Posted

      It is amazing the number of doctors who do not tell patients that PMR is a chronic condition and you don't start off on pred, then cut down as fast as possible to zero and lo and behold the PMR has gone away. I must admit my rheumy did actually say the first time I saw him that I should expect it to take three and a half to four years. I am not sure where he actually got those figures from though.
    • susan91476
      susan91476 Anhaga

      Posted

      Like your doctor, mine also did not share that this was a chronic condition, and I would need to learn to live with it.  But as I said in my first post, when I was diagnosed in June of this year, my gp put me on 40 mg a day, and referred me to a rheumatologist.  He did not know she was going to be out of commission for 2 months, and I didn't know any better, so I stayed on the 40mg dosage for those 2 months.  By the time I got to the rheumy, I was in terrible shape - no pain, but every side effect prednisone offers was in fuil bloom - no strength in my legs (couldn't walk up one stair - legs would give out), dry mouth so bad it looked like I had a mouth full of cotton, I could function, but my head felt "foggy", and on and on.  She immediately dropped me to the 20 mg level, and I have described the lower dosages each 3 week period in my earlier posts.  Since I have found this forum, I am going to be in a much better position to discuss this her.  Thank you all so much.
  • jo42444
    jo42444 philoso4

    Posted

    Totally agree with Ptolemy. Thought I could be different. So here I sit on the couch Sunday morning have my own pitty party and knowing full well its my own falt should have listened to,my friends with the disease who know better from experience. By the time my doctor increased pred from 2.5 to 5 for the last week I don't know if it will be enough pain still increasing as I believe I let it get out of control. I started on 20mg 11months ago and was down to 2.5at the beggining of Oct. This is way to fast

    Joanne

  • susan91476
    susan91476 philoso4

    Posted

    I am too new to this condition to be able to make that decision alone.  I am thankful to have found this forum, because it always help with a decision such as this, when you have the experience of others to draw upon.  At the present time, I am following my doctor's orders, and so far, the pain levels are way down from the beginning.  I am experiencing some stiffness now in the morning, but the weather is changing and perhaps that is part of it.  By midday, it is better.  I would consider losing my hair a symptom of too much prednisone.  I am on 10 mg daily.
    • Anhaga
      Anhaga susan91476

      Posted

      We will get side effects from the dose that is "right" for us.  For example, loss of bone mass is not even a "side" effect, it is such a direct effect that it is high on the list of risk factors for osteoporosis and being on steroid therapy automatically puts you into a higher risk bracket, all else being equal, when being evaluated for fracture risk.  In that context, I'd put thinning hair at a much lower level of concern.  I am currently at 8, having come down from my initial dose of 15 in June.  I did not lose my hair in chunks, but what I think is happening with me is that the new hair is not growing in while I continue to shed old hair at the usual rate.  My hairdresser says I still have lots of hair, but to me it seems thinner and with far less body.  I am really vain about my hair, but this too will pass, and meantime I do have a better quality of life than I did last May and for more than a year before that.  and I am not rushing myself off the pred, in spite of my bone issues, because I did have some minor indications that GCA might be waiting in the wings.  Eyesight is my first priority, everything else, even the skeleton, comes after.
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