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PMR, tapering Prednisone

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kathy67492
kathy67492

hi..I am not new to the forum...have been on the prednisone since my diagnosis last March, 2014. I am at 10 mg daily and wake up in the morning with aching in my groin, hips and shoulders; supplement with the TYLENOL when doing activities. Last attempt to go to 9 mg daily was not successful..that was around October 1st. Is the a.m. Pain an I dicayion that I am not ready to taper?....or should I try again. My bone density is good at this time, but my rheumatologist wants me to move toward tapering. Thank you for your suggestions.

0 likes, 21 replies

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  • EileenH
    EileenH kathy67492

    Posted

    The morning pain and stiffness is a sign that the inflammation causing your PMR symptoms is not being kept under control fully by the dose you are on. 

    I'm sure your rheumy DOES want you to move toward tapering - he blatantly doesn't understand PMR. To be down to 10mg after barely 8 months is actually not bad. The Bristol group would have you staying at 10mg for a year - the last link in the first post on this thread:

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

    PMR is due to an on-going underlying autoimmune disorder which leads to pain and stiffness, a bit like rheumatoid arthritis but the joints are not destroyed even when they may be involved pain-wise. Unfortunately, PMR does not respond to any medications alone other than pred - some doctors will use DMARDs alongside pred in an attempt to reduce the dose opred but it rarely works long term and they also have side effects. Your rheumatologist would not tell an RA patient to wean off the only drug that managed their disease, like PMR there are no cures. Why is he trying to do that with you? 

    He is not alone of course, many doctors do not appear to understand that PMR is a long term illness that will go into remission when it is ready. Until then you need pred for management, removing it or attempting to reduce below the amount you need will simply result in the symptoms returning. If he is difficult and forces the issue - find another rheumy.

    I have been on pred at above10mg for most of the last 5 years. My bone density is acceptable, pretty much unchanged insofar as it is possible to tell since the dexascans were done of different machines. I have no diabetes, I have lost weight and my cholesterol is also fine. Osteoporosis etc are NOT inevitable.

    • kathy67492
      kathy67492 EileenH

      Posted

      Thank you Eileen! I will push to stay on for a few more months. I must have permanent "brain fog" because I cannot remember, with any resolve, to stay the course! Reminds me of the bio-identical hormones I take; I always think I can do without them when I feel good! Great to have the encouragement of all the folks on this forum...Thank you!
    • karen28161
      karen28161 kathy67492

      Posted

      Kathy I am in the same boat as you with trying to reduce preds ,I am 54 and have had PMR for only 18 months ,I started on 20 and know I am down to 8 ,and I am in sooo much pain I could cry all the time ,even down to pressing the deodorant button in the morning ......it helps my pain to take ibuprofen ,so doctors tell you not to take this ,but it really helps me.i am due to see my consultant next week and I am going to tell him I cannot reduce my preds any more for a while .what a great help this site is ,wish all of us polly sufferers a pain free Christmas 
    • EileenH
      EileenH karen28161

      Posted

      Karen - you have to make it clear to the rheumy that this dose is NOT enough to control the inflammation, You are getting the downsides of the pred with no benefits and you might as well not be taking any at all. You need to get the inflammation under control with a higher dose again - and when you reduce then you stop reducing when you find the dose that manages the symptoms. You find the dose where it starts to hurt again - and go back up 1mg to the one that worked. 

      If your rheumy won't agree to that - look for another for a second opinion or find a GP who is prepared to manage you and listen to your reports of pain etc. The symptoms are the ruler of any reduction - the idea is to be on a dose that leaves you in a liveable-in state. You are not there at present.

    • karen28161
      karen28161 EileenH

      Posted

      Thank you Eileen ,my hubby is coming with me to see my rheumy next week lol and he said he is to tell him just how much pain I am in x
    • EileenH
      EileenH karen28161

      Posted

      More power to the man!!!! That's what I like to hear. I hate to say it but iti s amazing how much it can concentrate their minds when a male partner turns up. 
    • kathy67492
      kathy67492 EileenH

      Posted

      Hope you see this, Eileen, as I am posting on an "old" post. I am almost to the end (one more week) of tapering from 7-1/2 to 7 (2-1/2 yrs into PMR).

      This left foot, knee thing is my only complaint...recently spread to knee.

      PMR?...or arthritis, which I know I have?  If the tapering is causing this, maybe it is too soon? Should I stay at 7-1/2? Was at 7-1/2 for 11 straight weeks last April....have tried the regular dead slow taper 2-3 times and could not do it. This time I started the dead slow+...one day new, 6 days old..one day new, 5 days old....and all is fine, except for this left leg. Maybe it is too soon. Was planning on continuing the dead slow+ right away...try to go to 6-1/2...? Any comments or suggestions? Thank you??

    • EileenH
      EileenH kathy67492

      Posted

      If you have something that is just one limb it is more likely to be something else than PMR - it is typically on both sides, unevenly in some cases but bilateral. I'd stick where you are for at least a few weeks and see how it progresses. 

      "This left foot, knee thing is my only complaint...recently spread to knee" - what do you mean?

       

    • kathy67492
      kathy67492 EileenH

      Posted

      The left foot Thing....navicular tuberousity...means the navicular Ben right at the instep, side f the foot, is sticky out and is painful without the KT tape and proper shoes. I also had very stiff calves, like bricks, at one point, but dry needling took care of that. In the last couple of weeks, while in this taper, my left knee has gotten puffy and hurts if I am on it too long. On the other hand, it is still upon waking, and if I sit too long...but I can "walk it off" most f the time. That is why I think it is osteoarthritis...but why only in one knee?

       

    • EileenH
      EileenH kathy67492

      Posted

      Osteoarthritis doesn't have to be on both sides equally - you may stand differently on one leg, you may have damaged that knee joint in the past. all sorts of things. 

      If you have access to a therapist who offers dry needling - why not ask them what they think? I would. And it is possible there is somehting going on in that knee that isn't OA - again I'd ask for opinions from my doctors/complementary therapists. Maybe in the other way round order...

    • kathy67492
      kathy67492 EileenH

      Posted

      Good advice. I am also taking a break of most activity and will then go n a relaxing trip for a week...that should give my limbs a rest!  I think tapering on this prednisone is going to unearth a few Tyng's for me...not good!

  • tavidu
    tavidu kathy67492

    Posted

    kathy, its not your rheum's pain, taper very slowly to suit you. Good luck.
  • denise76179
    denise76179 kathy67492

    Posted

    I used to wake up with shoulder, wrist & sometimes elbow pain very early every morning and ran for the pred bottle.  It took until late morning before the pain would subside.  Since I started taking the Lodotra form of pred ( delayed release) I seem to suffer heaps less pain and have found I can reduce more quickly without any problems.  I was on 10mg about a month ago and have been reducing 1mg every 2 weeks and am now on 7mg.  Because everything has been going really well with this reduction I'll err on the side of caution and I'm now going to reduce the slow slow way at 1/2mg at a time.  I was diagonised in May 2014 so I'm pretty stoked about the result.  Now I don't know if it is the different form of pred or I'm just lucky. Lodotra is more expensive and that can be a draw back for some.  I really feel its worth a try.  I months worth won't break the bank and as my Dr said if it doesn't work any better I can easily go back to the subsidied ordinary form.  I went on a vegan diet for my sugar at the same time but have shamefully falled off the wagon and have been having a small amount of animal protien so have eliminated tyhe diet as the cause ( although I do think it helped a bit) 
    • EileenH
      EileenH denise76179

      Posted

      Careful Denise - remember you must not cut the Lodotra tablets. The slow reduction I have posted will work well though to slow down the rate.

      The different form does make a big difference to the early morning problems - it is there ready and waiting for the cytokines that cause the problems to appear and they don't get to do their dirty work! If you wait until the inflammation has started it takes far longer to work - like cleaning, you can do a little bit at a time or you can leave it until it is really dirt, if you see what I mean ;-)

    • erika59785
      erika59785 EileenH

      Posted

      Sometimes I wake up at 2 a.m. or 4 a.m. ---- wide awake which is not unusual for me ----I "run" for the bottle and take my 20 mg of Prednisone with some food, and then I am almost pain free in the morning.  I don't want the cytokines to do their dirty work! :-)
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