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Was doing great till reducing to 2 mg - help:)

Posted , 8 users are following.

Mrs.Mac-Canada
Mrs.Mac-Canada

I started at 20 mgs and started having a few problems when reducing past 5mg.  Thanks to Eileen and Mrs. O posting the alternate method of reducing (old dose and drop to new dose 1 day a week until totally at new dose) I have been successful in getting down to 2mg with no issues.  I kept to the "program" and am now at 1 and 0 mgs but for the past week or so have noticed increasing fatigue, stiffness and pain in my legs, butt, shoulders and arms.  Not happy.... 

I read another discussion about reducing to 1 for 2 months, 1/2 for a month (I think) and 1/4 for 2 weeks.  Would this be appropriate for me since I am having a bit of a flare or should I go back to 2mg.

I have the Camino de Santiago in my bucket list and really want to be well enough to give it a try next spring.   Then to Italy.  Maybe we'll run into you Eileen if we get that far north smile

Looking for advice from my wise fellow PMR friends.  Don't know what we'd all do without you.

Many thanks,   Diana

1 like, 36 replies

36 Replies

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  • EileenH
    EileenH Mrs.Mac-Canada

    Posted

    Stick at 1mg for a while, 2mg if necessary - it is such a low dose it is almost negligible. At this stage the drops are massive in terms of percentage so doing them even more slowly also makes sense. For example, do each stage of taking a day out/adding a day between old doses at least twice, maybe several times before moving on to the next.

    And NEVER forget: you are looking for the lowest dose that controls the symptoms, not heading to zero whatever - if the underlying autoimmune disorder is still active, you will still have some inflammation developing if you try to go below that "lowest controlling dose". 

    There are flares from trying to reduce with too big steps - probably NOT flares of the PMR, much more likely to be too big a removal of pred and that is the purpose of the reduction plan: you take out the likelihood of steroid withdrawal pain so when pain reappears it is more likely to be the PMR still being around. 

    If I get to 2mg I may stay there a very long time! After 10 years of dealing with PMR and its spin-offs I have no desire to return to the beginning. Call me a wimpif you like but 2mg of pred at over 60 isn't going to stop me living a decent life. PMR could.

    ALL the Camino de Santiago? You're nuts!

  • MrsO-UK_Surrey
    MrsO-UK_Surrey Mrs.Mac-Canada

    Posted

    Diana, I would try returning to 1mg daily for a week or so and, if no better, consider increasing back to at least 2mg.  Your returning pain sounds quite widespread so could point to a real flare, unless, of course, you can look back over the last couple of weeks and realise that you have overdone things, in which case it could just be your body rebelling.  As Eileen has said, each drop at these low doses becomes a higher percentage.   It is also possible that you have reached a dose where you need to remain for a considerable period of time rather than just continually following the reduction regime.

    I remained at 1mg for almost a year, mainly due to what I thought was sciatic pain from my hip to my foot, but I wasn't sure so didn't want to take any chances having finally got this far.  

    During that time, I also experienced what appeared to be a very sudden and major flare whilst on a riverside walk.  The walk was abandoned and getting back to the car was purgatory, and I remember feeling so dowhearted at what to all intents and purposes appeared to be a big flare.  However, it all resolved very quickly without any intervention, and I do hope you will have a similar experience.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada MrsO-UK_Surrey

      Posted

      Thanks for the encouraging words. This is what makes this forum so wonderful. It really helps to know what you are feeling is understood. smile
    • Mrs.Mac-Canada
      Mrs.Mac-Canada MrsO-UK_Surrey

      Posted

      I got worried that my flare might get worse if I didn't increase a bit so went back to 2mg / day last Wednesday.  The pain has almost gone except a bit in my arms and legs but I am so tired.  I seem to be able to get about 7 hrs a night (broken up) but I just drag all day and I'm not doing anything but a bit of housework. I'm also very emotional and feel like a wimp.  Do you think I should increase a bit more to see if my symptoms become more "managed" or should I stick with the 2mg for a bit longer.  Patience is not one of my virtuessmile.
    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      No you are NOT a wimp! You are a poorly person and entitled to feel a little bit rubbish. If you have a flare you need to rest - and you could have a cold or other viral infection to boot which may be what is making you feel so unwell. Plus the UK weather will probably affect rheumatism at the moment. 

      I don't know - if the symptoms are controlled you may have done enough and it just will take a bit longer. Anything up to 5mg is a low dose, maybe a few days at 5, a couple at 4 and back to 3 might do the job and you might feel better in yourself. But rest in the afternoon and you will almost certainly get more out of the day and feel altogether better.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      Thanks for the kind wordsbiggrin.

      I'm afraid I can't blame the weather since I actually live in Pitt Meadows, British Columbia, Canada and the weather has been lovely here.  Our summer will be ending soon but not quite yet, at least for this year.

      I increased my dose to 5mg today since I wasn't any better this morning.  I'll give it a few days (is 3 days OK or do I go by my symptoms?) then decrease to 4mgs for a few days etc as you suggested.  When I get to 3, if all is well, I'll begin to decrease by 1/2 mg in the 1 day new 6 days old plan.

      Since the ESR is not really reliable would the CRP test be better or are they more or less used as a baseline?

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      Until the symptoms have improved as far as they will. Even 5mg is a low dose and it is obvious that you are not yet ready to go all the way to zero - however much you would like to. And when you get to 3 I would be inclined to hang about there for a couple of months and make sure that is controlling the inflammation. At this stage it is possible that if you continue regardless you may be just at the borderline but slightly below it so the inflammation will start to increase very slowly. If you continue reducing you might be adding to that thinking you are OK when actually there is a tiny drip drip of trouble. And I would do the same for the following doses too.
    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      Ooops - the ESR/CRP are only guidelines, it is the symptoms that are king. Like the returning inflammation lags behind the lowered dose, the blood tests will almost certainly lag far behind too - they only start to rise once there is inflammation to produce the proteins that are causing the increased readings. It is all indirect. The key will be to mark time at each dose as you go down and make sure it is still enough. It sounds slow - but it is still faster and better than going too far down and having to jump back to a higher dose.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      I have some serious family stresses going on with my kids right now so will probably not reduce from 5 for a bit. I've decided that I need to accept that my body will let me know what to do and when. Thanks for explaining the CUP and ESR

      .

      Your advice much appreciated again (and again and again)smile

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      I wonder if we'd have had our kids if we had know what a pain they can be (inthe nicest possible way you understand!!), even at over 30! In that case - no reductions! Just enjoy feeling well.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      I was saying the same thing myself (in the nicest possible way). Going to watch carefully and if not improved in the next few days may increase a bit more. My first day at 5mg was great. Pain gone and walking fine. Today not so much but little sleep last night. Nap for sure this afternoon. 

      Don't think this situation is going to change any time soon unfortunately but at least with PMR there is something we can do about the symptoms by changing dosage.

      '

    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      I have been on 5mg for over a week and still feeling tired and minor pain in my behind and legs. Should I consider increasing again. Should you be TOTALLY symptom free at your "managing dose"?

      Went to my GP for a checkup and she found I now have a heart murmur. Is this from the pred or PMR? Also findingI haveshotness of breath I didn't notice before. Never sure if these things are from pred., PMR or just old age.

      Also feeling really lousy about how I've messed up our retirement plans. My sweetheart is getting in the best state of health he's been in for years

      and half the time I'm to tired to even go for a walk. Bit of a ptiy party

      happening here. Sorry about thatsmile

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      I don't know anyone who is totally free from pain at any dose to be honest. If that pain gets any worse though - go back to where you were comfortable for now. 

      And what is your GP doing about the "murmur"? Referring you I hope. It depends what is causing it. The autoimmune part of PMR can cause damage to various parts of the cardiovascular system. My cardiologist is confident that is what caused my atrial fibrillation - damaged the cells that trigger the electrical signals to the heart. If you have a heart problem that could cause the shortness of breath - it needs to be investigated properly. Not by a GP. It could be the pred - but only an expert can offer an opinion on that. My a/f started about the same time as the PMR and I didn't get pred for 5 years or so - so I know it wasn't the pred.

      You are by no means the only person who has the "retirement plans" problem. We bought a flat at the bottom of a ski run - the PMR has interfered with that! Though we live here and love it and the medical care is far better than in the UK the skiing is a bit can I/can't I?

      And never apologise for having apity party - that's why the forums are here. All of us know where you're at - family and friends don't. WE've all had the same feelings - but it WILL improve. It might not be yet and you might not get back to where you were before PMR - but it will be better than now. If at 5mg you feel well - stay there for a while. If it is 6mg that's not bad either. Anything below about 7.5mg is a low dose - if that gives you a decent quality of life accept it for the present. Don't force a reduction just for the sake of it - that is totally counter-productive.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Mrs.Mac-Canada

      Posted

      Diana, only a few very lucky people become "totally" symptom-free down through the doses.  I was way below 5mg when sometimes I found I still had to sit down for a couple of minutes just in the middle of preparing breakfast to ease the pain in my lower back and legs.  You describe the pain as being "minor" so perhaps hold out at 5mg for a bit longer and see if it settles, at the same time avoiding stress, whether physical or emotional.

      I doubt the heart murmur is in any way connected to either the Pred or PMR.  I was diagnosed with one many years before PMR struck, which after investigating was put down to a leaky mitral valve in the heart - luckily it remains stable.

      It's so easy for us to feel guilty that we're upsetting our loved ones' retirement plans - so many of us seem to be struck down with this painful condition either just before or just after retirement.  Remember your plans are only postponed for a while and fingers crossed you will, in the not too distant future, be as fit and healthy as him to enjoy your retirment together.   

  • angie42852
    angie42852 Mrs.Mac-Canada

    Posted

    I'm also trying to get to the "0". I was decreasing by 1/2 mg three days a week, then four, then five, etc and got down to 2mg. When I reduced to 1 1/2, I got such horrible pains that I went up to 3 and I felt great. I'm now trying to decrease again and I'm at 2 1/2 four days a week. Every time I decrease an extra day I get stiffness all over. If I was smart, I'd stay at 3 where I feel absolutely no pain but I'd love to get completely off Prednisone - if I can!
    • EileenH
      EileenH angie42852

      Posted

      So would we all - but forcing a reduction often only leads to one end: a flare and having to go back to a much higher dose. 

      If the underlying autoimmune disorder is still active you will need some pred to control it. At this dose there are near enough no side effects. Is it worth risking a return to 5 or even 10mg to control a flare worth it?

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