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Advice -Going Down From 10 mg of Predinisone

Posted , 13 users are following.

joey_12298
joey_12298

I was on my way happily going down from 10 mg of Prednisone but  when I got to 7mg reducing to 6 mg of Prednisone, my body gave me too much pain. Misery became too much so had to go to 8mg where I felt pretty good before but that did not work so had to go to 10mg. NOT WHAT TO DO? Been on the 10 mg for 1& half weeks & feel great but of course want off these darn things! How long should I stay on the 10mg before trying to taper down again? When I hit the 8 mg mark, I was planning on doing the nearly stop method this time.  Is my plan appropriate? Please advise.  

0 likes, 42 replies

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  • joey_12298
    joey_12298

    Posted

    Thank you Rosemary. Good idea but I did have my Thyroid checked and it was OK
    • rosemary25383
      rosemary25383 joey_12298

      Posted

      Hello Joey

      I just typed you a long post and suddenly I lost it all, bother !   Anyway in a nutshell I(sort of), here goes again.

      I was actually talking about the parathyroid glands (4 glands the size of a grain of rice normally located behind the thyroid).  The thyroid deals with metabolism in the body and your doctor would have measured your TSH level (thyroid stimulating hormone).  For the parathyroid glands, they measure calcium and PTH (parathyroid hormone).

      Every cell in the body needs calcium and the parathyroid glands regulate the level of calcium in the body to within a very tight range.  If it goes too high or too low, it causes lots of nasty symptoms some of which are similar to PMR.  The high levels of calcium and PTH are caused when one (usually one) of the little glands grows a benign adenoma (tumour) on it which then needs to be removed so the levels go back to normal.

      When I first had the symptoms of Primary Hyperparathyroidism (PHPT), I was misdiagnosed with Polymyalgia.  Some of the symptoms are similar, particularly the severe muscle aches, pain rising from a chair etc.

      I was put on steroids (Prednisolone) for a year before they finally realised their mistake in diagnosing me with PMR which made my actual condition a lot worse.  I had a bone scan which showed I had osteopenia (thin bones due to loss of calcium) and PHPT always leads to osteoporosis and can also cause kidney stones in some people altho luckily I did not have those.  It also causes chronic fatigue as well as loss of concentration and memory because the high level of calcium affects the central nervous system.

      Initially they gave me 5 mg Pred before they diagnosed PMR to see if it had an effect.  Prednisolone only has a physiologic effect at 5 mg and above and initally it did take the edge off the pain so they assumed PMR.  But as soon as I tapered off, the symptoms became severe again.  All the Pred did was to mask the symptoms (but it also took calcium out of my bones as well as the PHPT disease so a double whammy).  Steroids are great if you have the right disease!

      I just wanted to mention it as you said you are having trouble coming off the steroids.  It might just be worth having your calcium and PTH levels checked just to make sure that your muscle aches are definitely due to Polymyalgia and not what I had.  Excess PTH in the body leeches calcium from the bones and puts in the blood making you feel ill, tired, achy - there are 21 different symptoms which people can get with Primary Hyperparathyroidism. 

      Either way both diseases have very unpleasant symptoms and I really hope that they did make the right diagnosis in your case because I suffered a LOT before it was diagnosed correctly and it cost me my job in the NHS as I was so ill.

      I wish you all the very best and hope you will let us all know how you get on.

      Kind regards.  Rosemary

       

    • joey_12298
      joey_12298 rosemary25383

      Posted

      Thank you Rosemary for taking the time to write out your story.  I am so sorry you had that experience.  You have helped us all alot.
    • rosemary25383
      rosemary25383 joey_12298

      Posted

      Thanks Joey

      If my story helps even just one person, then sharing it will have been worth it.

      My surgeon said it is difficult to secure a rheumatological diagnosis in a patient with hypercalcaemia (high calcium).

      I hope eventually you and the other sufferers on here will soon be in remission from PMR which is said to be a self-limiting disease which can take anywhere between 1 - 4 years to go into remission.

      Best wishes.

       

    • linda17563
      linda17563 rosemary25383

      Posted

      Thank you for all the info....I have some of the symptoms you describe, so can I ask what might sound a silly queation.....what exactly would you call the blood test that is needed?   Calcium and PTF?  Not sure if my doctor would agree to it....so is it possible to have it done privately?  Once again thank you....how would we all cope without the knowlrdge we have from each other!smile....

    • rosemary25383
      rosemary25383 linda17563

      Posted

      Hello Linda - just saw your message, sorry for delay in reply but I went away for a few days holiday and only just back.

      Re the blood tests - well, the two you need are a calcium blood test and the other a PTH (parathyroid hormone level) blood test.  If both of these are elevated then you likely have a parathyroid problem rather than polymyalgia.  I think you can get them done privately, you could look on-lie, most things are possible but I don't see why your doctor should say no.  My doctor has never said no to me when I have asked for tests.

      If you mention you know of someone who was wrongly diagosed with PMR and had high calcium and PTH and it was in fact primary hyperparathyroidisms, I don't see why they should refuse.  Where abouts are you, in the UK?  It is still possible to have parathyroid disease if they are high normal as a small number of people will have that but usually both levels are high.

      Good luck with that and let us know how you get on.  It's great to share info as you say, we can all help each other.  Hope you feel better soon.smile

       

    • rosemary25383
      rosemary25383

      Posted

      .....sorry, my pc was a bit wobbly - I made a couple of typos - it should read 'on-line' and primary hyperparathyroidism (no 's' on the end) doh!

    • linda17563
      linda17563 rosemary25383

      Posted

      Thanks again, hope you had a good hols....

      I am in Norfolk (UK)....my doctor is very good, so hope she will agree to tests, she says I`m complicated because I have Fibro as well.  I do get palpitations now and again,  my sisters both have underactive thyroids....when I`ve been tested in past, doctor says it`s fine...

      Many days I`m housebound, but I do like answers to know what I`m dealing with...I will say about wrong diagnosis...it`s a battle really a minefield isn`t it....which we could all do without!

      Will keep you posted.....Thanks again...

  • tina-uk_cwall
    tina-uk_cwall joey_12298

    Posted

    Hello joey, when you had these pains whilst at 6mgs I believe that, providing these pains worsened each day, this was the beginning of a flare and you did do precisely the right thing and upped to 10mgs. When you have the beginnings of a flare it is correct to leap on top of it straight away and sometimes that is only achievable by upping by a large margin.

    personally I this happened to me, I would stay on 10mgs for 4 weeks, then reduce to 9.5 for 4 weeks, then 9mgs for 4 weeks, then 8.5mgs for 4 weeks then 7.5mgs for 4 weeks then 7mgs for 4 weeks then adopt the dead slow and almost stop method of reducing further. I have adopted a form of the dsas method and only ever reduce by .5mgs. I am presently at 5mgs and doing very well.

    The only reason why I suggest adopting the dsas method at 7mgs is because you were fine at this level and the problem appears to be reducing from this dose, but to begin at 8mgs would be good too. 

    You say that you want to get off these drugs, well we all do, but this flare is proof that if you reduce to much, and I believe 1mgs reduction once you hit the 10mgs mark is too much, risks a flare and a flare always results in upping the preds, so that means you'll actually be on the drug longer, so slowly slowly catchy monkey is always better.

    all the best, tina

     

  • Anhaga
    Anhaga joey_12298

    Posted

    Started at 15 mg last JUne, on taht dose for 5 weeks, then following doctor's instructions reduced be 1 mg per week. I encountered pain at 9 mg, went back to 10 for a couple or three weeks then, with GPs's blessing, started the dead slow reduction plan.  With some minor tweaking on my part as I respond to my body's needs and capabilities I am now around the 3.5 mg mark.  It has taken about eight months to accomplish this but, as they say, it isn't slow if it works.  At this stage I would never drop by a whole mg, but go by .5 mg, although I have also been able to drop a second .5 mg halfway through each dead slow taper to actually accomplish a full mg each time.  I stay at the new dose for a couple of weeks before starting a new taper.  At first I used a four day sequence, now I'm using the full six day start stop, and even doing the six day one a couple of times if I sense resistance.  Just a question of cautiously prodding until finally the taper "takes" as I think a lot of the discomfort I feel at the start of a taper is pred withdrawal rather than PMR and I need to let my body get used to the new dose very carefully.

    • Juno-Irl-Dub
      Juno-Irl-Dub Anhaga

      Posted

      Anhaga, when I got to the 3.5 dose, I started reducing by 0.25 using the dsns method, Only problem was trying to cut the damn 1mg pills into quarters!!  Still, am down to 2.25/2.0 now. . . . .  J
    • Anhaga
      Anhaga Juno-Irl-Dub

      Posted

      I was thinking about that, and the pill cutter I have isn't accurate enough. rolleyes

    • Juno-Irl-Dub
      Juno-Irl-Dub Anhaga

      Posted

      I use the pill cutter to cut the 1mg. in half. Then I get a razor, put on the glasses, and disect the half mg.!  Sometimes perfect result,  other occasions the darn pill kind of crumbles and thus you loose some of them this way . . . Can't think of a better idea. Why on earth don't the make the smaller doses in a single pill???     J

    • Anhaga
      Anhaga Juno-Irl-Dub

      Posted

      I think we can thank our lucky stars that we can get 1 mg.  I understand that in some places the smallest pill is 2.5.  Obviously this supply is not designed for PMR patients!
    • joey_12298
      joey_12298 Juno-Irl-Dub

      Posted

      Good idea.  This Prednisone has me so silly that I did not think to go to quarter of pills. Well, if I have to I will as long as it gets to a good end - NO MORE PRED!
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