1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

My Journey of PMR

Posted , 9 users are following.

Magilla53
Magilla53

Hi Everyone

I have now been on Prednisone for about 7 weeks starting at 20 megs, which did not relieve all off my pain so Doc  increased dose to 30 megs.in which completely levelled my pain to zero. When Pred.got increased the Doc. said to take 15 megs. in morning  7:30  and 15 megs. at night  7:30. Did this for about four weeks,back to the the Doc. and he said to reduce by 5 megs. Which I did , 10 in morn. 15 at night, also to my surprise worked well with no noticeable change felt really good still. 

  Back to the Doc.with CRP blood work tested at .4 my high was at 31 when I was first diagnosed with PMR  Doc suggests to drop 2.5 megs. in about a weeks time. 

  Did so on Feb. 6  12.5 mg. in morn. 10 at night , once again seems to be working just fine. 

  My question to everyone is that reading this blog it seems most people seem to take their dose of Preds all at once. I was just wondering if anyone else does this spit dosage system. 

   Also from reading this blog which I find most helpful and informative it seems my reduction schedule has been quite quick, having been diagnosed in early December started Preds. Dec. 15  at the 30 mg dose and now at 22.5. 

   Thanks to you all !! And Patient for  having this blog  to be able have this communication with fellow sufferers 

1 like, 18 replies

18 Replies

Next
  • EileenH
    EileenH Magilla53

    Posted

    The standard instruction is to take the dose all at once in the morning - it is felt to work best, interfere less with sleep and have less effect on the adrenal gland function. Above 15mg it makes no difference when you take it - the adrenals will be suppressed after a few weeks. There are quite a few people who split their dose - but they split it because they find the antiinflammatory effect doesn't last the full 24 hours (it varies from 12 to 36 hours depending on the person). They usually take about 2/3 in the morning, the rest later in the day, at various times, so it suits them best.

    30mg is a pretty high starting dose and should be well enough to manage the inflammation - if you had taken the 20mg for a bit longer it would probably have worked too, it sometimes takes a week or two to get a really good result. You are still well above the sort of dose you would hope will manage the daily dose of new inflammation so it doesn't matter you have been reducing quickly, in fact it is a good thing to get down to a more usual dose fairly quickly before your body gets too used to the pred - then it gets more difficult.

    It's when you get down to below 20mg that you may find it gets more difficult - and you shouldn't contiue reducing in 5mg steps then, 2.5mg is as much as most people cope with and some need to do 1mg steps. The basic rule is not more than 10% of the current dose at a time. But even that is too much for some.

    If you reduce and have returning pain - go back to the dose that worked quickly and then try again, more slowly. Don't wait to see if it gets better - if you let a flare get away from you it can be harder to get under control!

    • Magilla53
      Magilla53 EileenH

      Posted

      Hi Eileen 

           Thank you for your detailed response I find most helpful ..Now that I'm on a split dose It seems to work just fine but I wonder when I get below 10 megs do I switch to a single dose for the day or carry on splitting the dosage? I know that a 10 meg dose is quite a ways down the road but I am curious of what approach to take when the time comes. 

             Thanks again

    • EileenH
      EileenH Magilla53

      Posted

      All depends - whatever works for you is the real answer. I'm sure there will be people along who have got to low split doses who will tell you how they did it. People who get to that stage are often less "present" on this forum. There are more on the HealthUnlocked PMRGCA forum I think, just because there are a lot more people on there these days.

    • frances80868
      frances80868 EileenH

      Posted

      Where can I find the information about the best way to reduce dosage of P-rx, under my doctor's care. Also, I missed a 17.5mg dose last week and the next afternoon I was miserable. I was surprised it came on so quickly. I went back to 20mg and plan to start reducing tomorrow, 17.5mg. thanks for all you good advise. Frances in Virginia.

    • EileenH
      EileenH frances80868

      Posted

      This

      https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

      is a link to the homepage of the forum. The first pinned post is - as far as I'm concerned at least and quite a few others agree with me - one of the best slow reduction approaches you'll find (I am biased of course). Not least because it is far slower than anything most doctors ever think about. They think it is slow - it isn't slow when it works and you don't have flares and end up having to go back to a higher dose!

      The anti-inflammatory effect of pred lasts from 12 to 36+ hours depending on the person. If you happen to be someone who is towards the 12 hour end of that range you may even find that the effect wears off during the day. So if you forget a daily dose the chances of lasting far through the second day are small. The new inflammation happens every morning - so it isn't a case of clearing out the inflammation and then stopping pred as it is with many things. The cause of the inlammation is ongoing - and as long as it is active, you will need some pred. It wasn't a flare though - you forgot your "headache pill". You would probably have been fine if you had just taken the 17.5mg and carried on. 

      Get yourself a dosette box - you can get daily, weekly and even monthly ones. Sort out your dose for the period while you are feeling good and quiet with no distractions and maybe even set your phone to remind you to take your daily dose. Don't then do what I sometimes manage to do - the alarm goes off, I switch it off and forget the tablet... Never the pred though - that's just before bed for me, next to impossible to forget!

      If you have any questions do start a new thread. This one is quite old (not as old as my membership so I see it) but there are lots of people using the reduction method and many have slightly different tweaks they find help. 

  • adette01750
    adette01750 Magilla53

    Posted

    Hi Magilla53

    Yes I do split my doses into 2, as do others on this site. I have 2/3 of my dose AM and 1/3 approx PM. It has worked well for me. Also I was started on 25mg and upped to 30mg a week later in July but by September I was at 22.5 also and then did slower drops 1mg every 3 weeks as I have very sensitive drops, shakes, neck pain and headaches on larger drops.

    I hope it all continues to work well for you.

    Also like you I feel the wealth of knowledge and support from this site is amazing.

    Take care.

  • diana21296
    diana21296 Magilla53

    Posted

    I learnt to split my dose from this forum after 6 weeks on 30mg.  Hospital tried to get me to drop to 20mg after one week and it was hell.  Had to go back up to 30mg and stay there for 6 weeks.  But splitting then made an enormous difference to my quality of life as it got me nicely through the night rather than suffer awful pain from 2am.   I am down to 12mg after just over a year as can only drop very slowly and I am still splitting.     But it all goes very gently and is successful so it doesn't bother me. Slowly but surely is the name of this PMR game!  Good Luck...

  • jean50664
    jean50664 Magilla53

    Posted

    Different doctors Magilla......perhaps they all have had different results. It seems more logical to me that you would split them, so creating a balanced intake, instead of one

    big hit.

    you sound like you are doing really well.

    So just a question, what do you think bought this on.

    I "contracted" this two weeks before Xmas, and I put it down to stress. Physically working too hard on my daughters renovated house to get it onto the market before they left for overseas, and running on Adrenalin.

    Jean

     

    • Magilla53
      Magilla53 jean50664

      Posted

      Hi Jean

        Not quite sure what brought my PMR on. Prior to the diagnosis I had a esophagus problem and trouble swallowing food periodically. That intern got me to go see the  Doc. Then off to a gastro specialist which lead to a barium swallow at the hospital which showed a narrowing part way down my esophagus. Then a scope of my esophagus which the specialist 

      diagnosed Barrett's oesophagus and recommended 40 megs of Pantoloc twice a day for acid reflux. Within three or four days after taking Pantoloc is when my symptoms of PMR started to appear. 

          Also could be stress for various reasons over the Christmas season. I must admit it has been an eye opener as we age ,and you never know what's around the corner of life 

    • EileenH
      EileenH jean50664

      Posted

      "It seems more logical to me that you would split them, so creating a balanced intake, instead of one"

      The shedding of the substances that causes the inflammation happens once a day - in the early morning. If you take the full dose all at once to deal with that you can often manage with a lower dose - there is one form of prednisone which you take at night and it releases at 2am, leading to a high blood level just as these cytokines are released. There is no morning stiffness at all, patients consistently require a lower dose and the effect lasts until the next morning. Even patients who don't take pred at all find that by evening the pain and stiffness is waning enough to be able to sleep fairly well - until the morning dose of cytokines starts on their work again. 

      Taking a single large dose also has the advantage it is easy to remember, improving compliance. That is why it is prednisone/prednisolone and methylprednisolone which are the corticosteroids used in PMR, for a large propotion of patients the effects lasts 24 hours. For a few it doesn't - and they do better with a split dose. The other advantage is felt to be that the drug itself is excreted quickly, the effect lasts much longer - and taking a single dose means your body has a much longer time with none present in the body so the side effects tend to be less.

    • EileenH
      EileenH Magilla53

      Posted

      Arthralgia and myalgia are known but rare side effects of Pantoloc. There are many drugs that have been found to cause similar symptoms. There are also some where it is suspected they were the final trigger that led to PMR developing.

      There is no single cause of PMR - it is an accumulation of things that stress the immune system and eventually one is the thing that breaks the camel's back and PMR appears. It isn't something you "catch" - it is your immune system going haywire and attacking your body by mistake, leading to cell damage, inflammation and pain and stiffness as a result. In some ways you could say it is rather like RA - but without the joint damage. If lasting damage occurs it tends to be to blood vessels, for example the inside layer is damaged by the inflammation and makes peripheral vascular diseas more likely although that is even more likely with GCA - but they overlap and no-one ever looks to see if the patients with "just" PMR have obvious vasculitis so they don't ever find out.

    • Magilla53
      Magilla53 EileenH

      Posted

       Hi  Eileen. 

        It is now been six months since I was diagnosed with PMR 

         I am now at 10 megs of prednisone down from the initial 30. Things have gone quite well as far as reduction have not had a flareup Just  a bit of  aches in my legs when I do my reduction for a couple days then it goes away. No pain whatsoever in my shoulders which was quite prominent when I first got diagnosed. 

          Now that I'm at 10 megs of prednisones I do a split those five in the morning and five at night. But in the last week what  I have noticed is I have considerable ache and pain in my hands. They tend to fall asleep quite often during the day and at night my right is worse than my left hand .The only  I can compare it to would be a toothache white quite  aggravating at  night and stops me from having a full nights  sleep. 

         Just wondering if you think this is PMR or could it possibly be arthritis if it carries on I'll have to see my GP 

    • EileenH
      EileenH Magilla53

      Posted

      Where is the ache and pins and needles? Does it predominantly affect your thumb to middle fingers? If so - it could be carpal tunnel syndrome which is quite common in PMR. At the higher doses of pred it may have masked it but now the dose is too low and it is beginning to show.
    • Magilla53
      Magilla53 EileenH

      Posted

      The aches and pains are in my entire hand,  the numbness or pins and needles  is when  they fall asleep. Not prominent in  my thumbs or middle fingers. Never had this problem when first diagnosed,it has only appeared in the last couple of weeks. 
    • EileenH
      EileenH Magilla53

      Posted

      Still sounds like a trapped nerve problem somewhere - but difficult to say if it is in you neck, shoulder or wrist which are all possible. Time to ask the doctor...
    • Magilla53
      Magilla53 EileenH

      Posted

      Thanks Eileen for the quick response I have already booked an appointment to see my GP.  
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.