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Reducing my pred.

Posted , 13 users are following.

Crystalcave
Crystalcave

Hi there,  haven't been on here to write for a while but I do read others blogs. Wondered if you could help me.  I've been diagnosed with pmr for three years and have gone from 60mg when first diagnosed to14 mg which I'm on now.  Like everyone else suffer from all the pains every time I reduce, even by 1mg per month.  I went to see my Rheumy this week and he wasn't happy with me at all as I was still on 14mg .  He said he wants to see me going down by 1mg every two weeks.  I can hardly walk at the moment, my shoulders, neck and arms are all very painfully, which I told him.  He has referred me to a physio.  I feel that I know my own body better than he does but feel I have no choose as he can stop my medication.  Has anyone got any comments.

thanks,  sue

0 likes, 47 replies

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  • jennissw
    jennissw Crystalcave

    Posted

    Well allfrom 60mg to 14mg. But if it was done c things considered I feel he might want to reassess your diagnosis. What were your initial symptoms? It may be you have withdrawal pains and you have'nt said how fast or over what period you withdrew. I have a friend who was just diagnosed with RA because of similar issues. Not saying this is your problem as I am nt sure about your personal withdrawal process
  • jennissw
    jennissw Crystalcave

    Posted

    Well from what you have said I am not sure over what time period you went down from 60mg to 14mg. But if it was done slowly then all things considered I feel he might want to reassess your diagnosis. What were your initial symptoms? It may be you have withdrawal pains and you have'nt said how fast or over what period you withdrew. I have a friend who was just diagnosed with RA because of similar issues. Not saying this is your problem as I am not sure about your personal withdrawal process. So sorry about the messy previous post - my keyboard keeps going haywaire
  • EileenH
    EileenH Crystalcave

    Posted

    Hi Sue - nice to hear from you but I'm sorry you're back in this case!

    Was it just pmr you were diagnosed with? That was a very high dose to start with for PMR - that's normally 15-20mg/day - and 60mg is the dose to be used for GCA where there are visual symptoms. 

    If what you have is PMR, then 14mg should be controlling PMR pain fairly well so it is possible that you have steroid withdrawal pain which can be very similar. Or the diagnosis of PMR wasn't the right one in the first place - that is the main reason for using a lower dose in PMR because only PMR really responds to that sort of moderate dose whereas other things can appear to respond to a much higher dose. Also it does seem that many people have more difficulty reducing after being on high doses. Does it improve at all with ordinary painkillers taken regularly? PMR pain doesn't tend to, but having PMR doesn't prevent us from developing other problems which do.

    Don't panic until after seeing the physio - because there are things that those high doses of pred could help that physio would help better and which do tend to occur alongside PMR. How long will you have to wait to see a physio? Can  you afford/would you consider alternative therapies like osteopathy or Bowen technique?

    MrsK had a lot of pain before Christmas, she couldn't walk without a stick or help and even getting out of bed was awful. Eventually she gave in to my bullying ;-) and went to see my former Bowen therapist - who worked a minor miracle in the first session: she needed a friend to drive her there and a walking stick and the friend to get from the car to the room. She walked out to the car after an hour's session! She's on to maintenance sessions now. My therapists both told me that you can tell if it will help within 3 sessions - if it hasn't worked by then it probably won't but if you have a permanent problem you may need sessions every few months to keep on top of it. It has been shown to have excellent results for frozen shoulder - and I don't know anyone who has been that it hasn't helped. 

    • Crystalcave
      Crystalcave EileenH

      Posted

      Hello EileenH,  thanks for getting back.  Yes it was pmr I was diagnosed with three years ago.  When I first presented myself at A&E at my local hospital I felt like I was dying.  I'm not one for fuss but I'd put up with the pains for almost two weeks.  I thought at first I had flu.  Couldn't get out of bed, couldn't turn over, muscle pain like I've never had before.  Anyway, after test in hospital the consultant said I have pmr and put me on60mg of pred.  By the next day I felt great!  Couldn't believe how quickly I felt so much better.  Since then I have been diagnosed with liver scarring and diabetes type2,  the hospital thinks it may be pred induced.  Over the couple of years I have come downtown 9 mg a day, but then the Rhuemy put me back up to 20mg to give the pmr a good blast.  Also, I have hip dysplasia and am waiting for a hip replacement.  It sometimes is hard to know the difference between the hip problem and muscle pain with the pmr.  I have also started to get headaches and pain down the side of my face just in front of my ears, also tenderness to my scalp.  I told my Rheumy but he said my crp and esr levels are all normal.  

      I have my physio appointment on 17th July.  I'll see how that goes,  hopefully it will help.  I take paracetamol as painkillers,  most of the time it only just takes the edge off the pain,  which is fine.  For the last couple of months I have been in constant pain.  My Rheumy said I should expect some pain,  but to be in constant pain brings you down after a bit.  Sounds like I'm moaning,  sorry,  I hope that's not how it comes over.  It's really usefull to get comments and help from you and everyone that's comes on here.  Thanks for listening.

      sue

    • EileenH
      EileenH Crystalcave

      Posted

      No, it doesn't sound as if you are moaning - but it sounds to me as if you need a second rheumy opinion, preferably from someone who doesn't take bloods as gospel. Like PMR, some patients who have clinically proven GCA never have abnormal bloods and those head symptoms and the PMR all put together are enough to worry me enough to suggest that. Where are you? 
    • Crystalcave
      Crystalcave EileenH

      Posted

      I live in tamworth,  Staffordshire, UK.  My Rheumy nurse who I sometimes see in between the Rheumy doc said to not take what he says as gospel as it isn't him who is in pain.  I'm keeping my eye closely on the headaches, and I don't have any problems with my eyesight.  I agree with you about having a second opinion but as he is the senior consultant I don't know where I would find another one. 
  • MrsO-UK_Surrey
    MrsO-UK_Surrey Crystalcave

    Posted

    Oh Sue, it isn[t true that you don't have any choice - it's your body and only you know how you feel.  Your rheumy might "want you down by 1mg every two weeks" but PMR doesn't ever do what anyone wants it to do - it will go into remission  when it is ready and not before.  

    If, as you say, you were diagnosed with 'just' PMR, then I'm very surprised that you were started on such a high initial dose - that dose is normally reserved for those diagnosed with the linked condition, GCA.

    Have you tried a slow tapering method, whereby you reduce by 1mg on just one day of the first week, two of the second, three of the third etc?  This seems somehow to trick the body into not noticing the reduction.  Some people who have problems reducing also find that just trying 0.5mg reduction each time can help.

    You say that your shoulders, neck and arms are all still very painful and that you can hardly walk, and I'm wondering whether you have been tested for other conditions such as rheumatoid arthritis.  Whilst suffering from one auto-immune condition it is very possible to succumb to another.

    If you haven't had a Vitamin D blood test, then it would be wise to request one as any deficiency can lead to pain similar to that of PMR and this can easily be rectified with a short course of Vit D3.

    Your rheumy should be further investigating rather than just telling you he isn't happy that you are still on 14mg after 3 years.  And just to reassure you many of us have been on that dose after that number of years - it was 5 1/2 years before my GCA and PMR went into remission.  If it were me, I would be asking for referral for a second opinion.

    • Crystalcave
      Crystalcave MrsO-UK_Surrey

      Posted

      Hello Mrs, 

      no I haven't tried the slower tapering method, I was just told to go down by 5mg fro the 60mg a month to begin with until I got to 30mg , had a few flair up's.  Then tried2.5mg per month but started having real problems again.  Then the Rheumy said go by 1mg per month. This has been ver the three year period of having pmr.  My GP nurse has said I have RA as it says in my notes but I have never been told by my Rheumy.  I do take Adcal tablets every day and also Alendronic Acid tablets.  I have 2monthly blood tests and annual dexa scan tests.

      thanks for your post

      Sue

    • EileenH
      EileenH Crystalcave

      Posted

      It never ceases to amaze me how the letters from the rheumy to the GP and patient bear nor resemblance to what we experienced during the consultation!

      MrsO mentioned a slow taper so this is the one I use and a lot of people on the HealthUnlocked are also using it, so far successfully. 1mg a month is good - but some people are so sensitive to dropping the steroid dose that doing it overnight is enough to give them pain. By starting with just one day at a time of the new dose it seems the body doesn't notice.

      A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.

      My reductions are VERY slow. I use the following pattern to reduce each 1mg:

      1 day new dose, 6 days old dose

      1 day new dose, 5 days old dose

      1 day new dose, 4 days old dose

      1 day new dose, 3 days old dose

      1 day new dose, 2 days old dose

      1 day new dose, 1 day old dose

      1 day old dose, 2 days new dose

      1 day old dose, 3 days new dose

      1 day old dose, 4 days new dose

      1 day old dose, 5 days new dose

      1 day old dose, 6 days new dose

      By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

      This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

      I'm VERY sensitive to lowering the dose so I start at "1 day new/6 days old" but a lot of people manage with starting at "1 day new/4 days old".

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Crystalcave

      Posted

      Sue, if you do, in fact, have RA that could be the reason you are still experiencing such pain.  The steroids may have helped at the very high doses but the gold standard treatment for RA is a drug called Methotrexate.  Surely the rheumy must have seen RA recorded in your notes - who else would have diagnosed this?  You definitely need to clarify this - either to confirm diagnosis or have it removed from your records if it isn't correct.

      With regard to Alendronic Acid, did a DEXA scan show thinning of your bones - either osteoporosis or osteopenia?  Obviously, if so then you would need some bone protection but many PMR patients are put on AA automatically alongside the steroids, often without need, and they can produce some nasty side effects themselves.  There are other drugs more friendly drugs, but if a DEXA scan shows normal bone density then the Adcal tablets should be sufficient together with a good supply of dietary calcium.  The Vitamin D test I mentioned previously  will confirm whether there is a need for a Vit D3 supplement - a good supply of Vit D3 enables more calcium from our food to be absorbed into our bodies, thus further protecting our bones.

    • EileenH
      EileenH Crystalcave

      Posted

      Yes - MrsO is right - if the rheumy has said you have RA, why isn't he TREATING you as if you have RA because while pred is used it isn't the first line approach by any means. That is something that needs clarifying, and quickly. My other post is being moderated - no idea what I wrote in it that offended the computerised scanner. I don't think there was a reference! Though apparently the "new improved" version spots odd words as being suspicious - can't even discuss certain things without being nabbed!
    • Crystalcave
      Crystalcave EileenH

      Posted

      smile   Thanks Eileen,  I'll certainly check on Wednesday when I go and see my GP about the RA.

      i'll get back to you

      Sue

    • Crystalcave
      Crystalcave EileenH

      Posted

      Thank you so much for this plan of reduction,  I'll start it straight away.

      Sue

  • muirkelsi
    muirkelsi Crystalcave

    Posted

    Good morning,

    How awful. You certainly do not have an understanding rheumatologist. I started on prednisolone last November, and after my doctor starting me one week at 15mg, then down to 10mg for another week, l was in a lot of pain. Luckily I saw another doctor, and the difference has been magical. She arranged for me to see a rheumatologist who was wonderful, and he printed out a prednisolone reduction regime for me to follow. I am now on 9mg, and will be for four weeks, and although I have a bit of aching in my arms and wrists, I am certainly so much better that I was a few weeks ago. I seeing him again in a about two weeks, and hopefully I will be able to drop even half a mg.

    I do hope you can find someone who is more understanding, who can help.

    Regards,

    Grace

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