Coming off pred

Posted , 11 users are following.

hi all I was told to reduce pred 1 mg a month, every thing seemed ok when I was on 2mg a month. At the beginning of this month down to 1 mg, since then have suffered all the pain back again feeling sick all the time, no appetite. It really feels like it was when I was supposedly misdiagnosed. Any help would be gratefully received. I will be contacting the Dr tomorrow to see if this is withdrawal symptoms and how long does it go on for.

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  • Posted

    Seventy year old mail living in US will be interested in replies to your situation since I have been told to reduce by 1mg/wk. Currently at 7mg and will reduce to 6 this coming Fri. As an aside, was told by rheumatologist that the difficult part is going from 10mg to 5mg and easier going from 5mg to 0mg.

    • Posted

      I wonder where your rheumatologist picked up his info about PMR. So wrong. The lower the slower you have to go and the closer you get to the lowest dose which manages your symptoms the harder it is to taper. If you are reducing by 1 mg per week and you have PMR, brace yourself for a fight with your doctor. You need what you need to control the symptoms and PMR lasts for several years, not a few weeks or months.

    • Posted

      Rather you than me. You are getting to the point where your adrenal glands will need to start working again which is tough on the body. It is normally recommended you hang around on 5mg for a couple of months even. How long did it take you to get to 7mg?

    • Posted

      Sed rate has been normal for 3 mths. During those three mths went from 15mg to 10mg and then began the 1mg/wk tapering. Currently no symptoms.

    • Posted

      Because you are still on high enough a dose of pred for there to be no inflammation which is what raises those blood tests. The lower you get - the closer you are to the target: the lowest dose that manages that inflammation. The fact they are normal doesn't mean the autoimmune disorder has gone away.

    • Posted

      Understand the PMR may only be in remission and could come back at any time. However, since the adrenal glands produce the hormone cortisol and that production is suppressed while taking prednison. So, isn't the question: How long does it take for the adrenal glands to begin production of this hormone? And, how to coordinate the intake of prednisone to compensate for any delayed adrenal gland delay in production of cortisol? Isn't this balancing act essentially the tapering strategy? And based on the collective experience of this site, tapering will very by individual.

    • Posted

      It isn't really in remission - only in drug-induced remission which isn't the same thing at all. Take the medication away - and back will come the symptoms. When it is properly in remission then you will be able to reduce the pred dose to zero without a return of PMR symptoms.

      There is no answer - as you reduce the pred dose below about 7.5mg the body should start to top it up to the amount required by the body. That varies from person to person, for one thing the bioavailability makes a difference: on e patient absorbs 50% of the oral dose, another 90% or anything inbetween, 10mg oral dose is any thing from 5 to 9mg effective dose. Bodies require a similar total amount to function - so at 10mg one patient gets plenty, another doesn't. You can't identify which group you belong to. And this is biology, not engineering - bodies don't function like a set of machines with the same components and specifications. So my adrenal glands won't sort themselves out at the same rate as yours or anyone else's. If i had a crystal ball - maybe, but I don't and nor does anyone else ...

      You don't coordinate the pred dose - your body coordinates the cortisol production as you stop giving it as much pred. In some people the adjustment of the entire HPA axis (hypothalamus, pituitary, adrenals) isn't entirely smooth at first, it swings about a bit and you feel the effect of too much of one thing and too much of another, there are a lot of hormones and organs involved. There is nothing you can do to alter any of that - even if the internet tries to sell you pills and potions and diets that they say will make it work better.

    • Posted

      Thank you very much. Excellent and useful points.

  • Posted

    See my reply to Rick. With a relentless taper at this low dose you are probably suffering both withdrawal and a flare of the original symptoms because your dose is no longer enough to control the symptoms. Too many doctors simply haven't got a clue how to use pred to treat PMR because they are used to giving pred as a short term treatment for acute, not long lasting, conditions. Reducing once a month is reasonable, but not once symptoms start to return. Then you need to go back to the last dose which worked well, and wait a while before trying an even slower taper.

    • Posted

      Thank you I have been on pred since Aug2017 after a year of waiting I saw rheumatologist who said it wasn't pmr but osteoarthritis. I think I was on 10mg then. she told me reduce 1mg monthly til zero which would take me to May. Since reducing to 1mg beginning of this month all symptoms returned plus feeling sick all the time. As I replied to Eileen I have Drs app this morning so will let you know outcome.

    • Posted

      I do wonder how they manage to confuse OA and PMR - they don't seem at all alike to me. PMR and an inflammatory arthritis maybe - but not OA. It doesn't affect muscles. Nor is the fatigue the same.

    • Posted

      just returned from Drs have been put on 2mg again for 3weeks then a blood test. my last test I found out today showed esr at 38. that was in February. I have an app with blood clinic next week and I will ask for the synacthen test don't do it at Drs. I hope taking 2mg again will stop the nausea. Will keep reading all the posts. thanks for your help invaluable.

    • Posted

      no wasn't told esr was raised they said all blood tests came back ok it was only today a different Dr told me. Like to say since getting home and taking extra mg the sick feeling has eased so very pleased about that. I will certainly ask esr results in future.

    • Posted

      I suppose it is possible the person who checked it was of the old school who thought up to 40 was fine for older patients - but it was borderline under any basis and should have been checked a bit later.

      If the sick feeling is better you really need to push to get your adrenal function checked.

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