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Update on recent flare and house move

Posted , 12 users are following.

kay56703
kay56703

Hi everyone.

So glad to be back online after 7 weeks..but feels like a lifetime away! Flare seems under control and pred down from a high of 25mg to 16mg (first week at lower dose). However, still in some discomfort over shoulders and down arms but bearable. Have good days and bad depending on weather. Very cold and damp here in Oxfordshire at present! Probably goes for much of Britain lol.

Currently reducing 1mg per week although new gp wanted 2mg reduction and to be at 12mg by now. I said that the pain needs to settle before any further reduction should be attempted. Hence the compromise. I still feel that this is going too fast and I need time for pain to settle before reducing further. Am I being reasonable or just a wooss? By the way I have only just printed off the link to the Bristol programme for pmr, but have yet to show him suggested reduction plan advised due to internet problems. I am not due to see gp again until Mch 9th.

1 like, 52 replies

52 Replies

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  • pauline36422
    pauline36422 kay56703

    Posted

    hi kay i  reducing   quater  at a time and also wait til reduction pain settles

    im on 1.5    1,2 alternate   i do still have a little pain and scared of a flare, but so far so good/ so keep it slow and do what your body is telling you  good luck

  • LisaCACO
    LisaCACO kay56703

    Posted

    I'm a newbie here since you've been away (GCA only), but the thing i'm learning about this tapering thing is that I'm in control, not my doc. I'm tapering this weekend from 70mg to 65mg and it has been pretty good. my doc's suggestion was to jump to 60 but I said "no way" and gave her my schedule that I wanted to do. I figure i have to go thru the pain. you should do what's comfy for you. 
  • linda81950
    linda81950 kay56703

    Posted

    Hi Kay!

    How long were you off prednisone before your flare up or were you ever off prednisone completely?  The reason I ask is that I have been off prednisone approx. 6 months now, with minor aches and pains that mimiced the main bout.  My doctor thought i was cured because my sedimentary levels were within the "normal range|.  I told her (when she asked me how I felt) that I had minor pain similar to when it first started two years ago.  Her response was "well, your blood levels are normal".  So, I felt that I was, to use your word, " a woose" and soldered on.  Having found this wonderful site and learned so much over the past week or so, I now know that I have had a relapse and must go back to my doctor for more treatment i.e. prednisone.  I was originally on prednisone for 2 years but obviously that was not enough time in my case.  I naively thought that a person could be cured of PM never realizing that it only goes into remission.  Getting back to my original question, how much time passed before you relapsed?  

    • kay56703
      kay56703 linda81950

      Posted

      Hi Linda

      I never came off Pred. I had successfully reduced to 9mg and was about to go to 8mg after stabalising for 6 weeks. However, this co-incided with the house move and problems with the solicitor plus family issues. Just bad timing really. I soldiered on for about 2-3 weeks but pain got worse before I realised what it was - a flare. My brain was disengaged I think for much of this time as I couldn't deal effectively with things and it all just got out of control. I knew I needed more pred but 'gp voice' in head made me increase too little too slowly. By the time I saw my gp in Dec I had increased to 15mg but not working. I finally ended up on 25mg for 2wks which did, thantkfully. I have then been slowly reducing 1mg p/wk. Currently on 16mg this week but with painful arms/shoulders. So I am going to slow reduction down now as per other posts here to allow body to stabalise b4 reducing again. By the way my gp has not done any blood tests since I joined practice in Jan. So I don't know what my 'sed' levels are. Never have. Best wishes. Kay

    • linda81950
      linda81950 kay56703

      Posted

      Thank you so much Kay for your reply.  I am beginning to realize through chats with you ladies that, although I was on Pred. for two years and I was gradually weaned by my doctor and felt so much better, that one needs to listen to one's body.  I believe that I may have been too anxious to stop the prednisone.  I have days when I feel sore around my groin and arms whereas other days I am almost normal.  I live in Ottawa Canada and it was reported yesterday or Saturday that we were the coldest capital in the world (that particular day).  So, it could have a lot to do with the colder temperatures, dampness, etc.  I am seeing my doctor next week and will discuss a possible hip replacement and my returning to prednisone.  Thanks Kay for getting back to me.
    • EileenH
      EileenH kay56703

      Posted

      When my PMR was more active and I was at a slightly jigher dose I found anything like you have been dealing with (house/move/family/solicitor) just left me in a flat spin. Now I fell different - obviously the adrenal production of cortisol was still trifle wobbly.

      Nothing like a "family home" to stir up antipathy is there...

  • linda81950
    linda81950 kay56703

    Posted

    Hi Kay!

    How long were you off prednisone before your flare up or were you ever off prednisone completely?  The reason I ask is that I have been off prednisone approx. 6 months now, with minor aches and pains that mimiced the main bout.  My doctor thought i was cured because my sedimentary levels were within the "normal range|.  I told her (when she asked me how I felt) that I had minor pain similar to when it first started two years ago.  Her response was "well, your blood levels are normal".  So, I felt that I was, to use your word, " a woose" and soldered on.  Having found this wonderful site and learned so much over the past week or so, I now know that I have had a relapse and must go back to my doctor for more treatment i.e. prednisone.  I was originally on prednisone for 2 years but obviously that was not enough time in my case.  I naively thought that a person could be cured of PM never realizing that it only goes into remission if you are lucky.  Getting back to my original question, how much time passed before you relapsed?  

  • EileenH
    EileenH kay56703

    Posted

    1mg a week is far too fast - it isn't allowing your body to adjust nor does it allow you to see if you have reached the lowest dose that manages the pain and stiffness AT THE MOMENT. You need at least 3 weeks at each dose. So no, you are being neither unreasonable nor a wooss. Cold and damp do not do PMR any good at all and slow and steady is the watchword in the winter - it could be different come the spring!

    The shoulder discomfort is most likely bursitis and that takes a lot longer to settle down than the muscle pain and stiffness - again, slowly, slowly.When you get to 15mg I would ask very politely but firmly to be allowed to reduce in 1mg steps but much more slowly. Have you had ESR/CRP measured? Were they high originally? Have they been checked since? If so, have they fallen (if they were high) and have they stopped falling? That should be the aim before progressing with the reduction. I suppose at least you were started high and haven't quite got to most people's starting dose yet.

    Good luck

  • liz12234
    liz12234 kay56703

    Posted

    Hi Kay, Im quite new to PMR only being diagnosed in Nov. i reduced by 3mg and my inflammation levels were up so it obviously was too much im waiting for my next blood test to see where i go next, i wish i had joined this forum before i reduced it by 3mg and i certainly wont be doing it again although phsically i am fine except for the dull ache behind my knees. I too live in Oxfordshire(drayton) maybe we could start a group

     

    • tina-uk_cwall
      tina-uk_cwall liz12234

      Posted

      Hello Liz, normal reduction is 15mgs for 6 weeks, 12.5 for 6 weeks followed by 10 mgs for anything up yo a year. However, their are some who find the reductions too large and therefore from the first dose of 15mgs reduce only 1mgs every 6 weeks and then at 10 mgs stay on that dose for anything up to a year. If the 3 mg reduction was too much what dose are you currently on? And it's good yo know that someone else experienced a dull ache behind their knees to. Christina 
    • liz12234
      liz12234 tina-uk_cwall

      Posted

      Ive been on 12mg for about 6weeks( i didnt realize the importance of maybe keepin a record, i am due blood test this thurs if no change do i go up or stay the same its a dilema
    • tina-uk_cwall
      tina-uk_cwall liz12234

      Posted

      Liz, I presume you started on 15 and went down to 12mgs. The most important thing about reducing is that you should never reduce more than what is needed to control the inflamation. The inflamation is there all the time bubbling away and the prednisolone stops it from flaring any higher. The condition hopefully will burn itself out and as the condition burns itself out that's when we are able to reduce the medication to then match the new lower level of inflamation.

      if the prednisolone is doing its job and controlling the inflamation then your next blood test will come back normal. The blood results will only come back high(er) if the medication is not controlling the current level of inflamation. If your results come back normal and you feel really well and there's no PMR pain then you can try and reduce to the next level, but if the results reveal some inflamation then you don't reduce. You wait abit longer for the inflamation to burn out abit more then attempt the next reduction dose. 

      There are patients who find that the 15-12.5-10 mgs are too big a leaps and will reduce only 1mgs at the higher doses and stay on each of those doses for 4-6 weeks, then at the lower doses, under 10 then adopt the .5 reduction and reduce slowly. 

      You say that you still experience some pain behind your knees, you may well be better getting that pain under control before reducing further anyway. See what your gp says when you see them but  I would probably up my dose just by 1mg and see if that brings the pain behind your knees under control. What is important is  just because your Dr says they want you to reduce, you should only reduce when the current level of inflamation is under control. In other words the dose should be enough to control the inflamation because the inflamation cannot be reduced to fit the dose of medication, no matter what the drs say. Christina

  • liz23617
    liz23617 kay56703

    Posted

    hi kay i have been on 10mg for3 weeks and dropped to 5mg this week, gained some relief when on 10mg,but dr wants to get me off asap but slowly
    • tina-uk_cwall
      tina-uk_cwall liz23617

      Posted

      Kay, may I ask how long you have been diagnosed with PMR and on medication. I ask because from 10 to 5 mgs is a huge leap, and surely not suggested by your Dr? You should be on 15 mgs for 6 weeks, 12.5 for 6 weeks, then on 10mfs fir anything up to a year, then it's a small reduction, slow taper from then on. Christina
    • EileenH
      EileenH liz23617

      Posted

      Dropping from 10mg to 5mg is not the way to go about reduction in PMR. When I first was given pred it was as 2 weeks each of 15,10 and 5mg and stop. The rheumy didn't believe it was PMR despite the dramatic 6 hour response I had after the first day's tablets. By the afternoon of the first day without pred I was back where I had been before, possibly even worse since I was in bed in tears (doesn't happen often, believe me).

      If your doctor is inexperienced in PMR then he will think PMR is just the same as any other inflammatory rheumatism where pred is used to reduce a flare. It isn't. In the other cases pred reduces the flare to a level where the other medication can cope again - in PMR the "other medication" is pred, there is no real alternative. As long as the underlying autoimmune disorder is active there will be inflammation created and as long as that is happening, you need pred to MANAGE the symptoms. That is all it is doing, there is no cure.

      Your doctor may want you off pred asap - but what he's doing isn't slow and it is unlikely to work. When you stop the pred, if what you have really is PMR as opposed to another rheumatism the pain and stiffness will be back and you will have to go back to a higher dose to control things - exactly what your doctor wants to avoid. PMR decides when it burns out and goes into remission without pred - until then you need pred at an adequate dose to control the pain. And there is no point taking pred unless you take enough to manage the symptoms - too little exposes you to side effects without any benefits, it is all a balance of side effects against benefits. They haven't found another way yet unfortunately.

      The second to last link in this post:

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

      is a paper aimed at GPs to help them mange their PMR patients without recourse to a specialist except for problems. The final link is another review article. Your doctor needs to read them - because they know rather more about managing PMR than he seems to.

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