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Prednisone long term use and adrenal insuffiency

Posted , 8 users are following.

BillyP
BillyP

After long term pred use i am now seeing my first known major prednisone side effect other

than weight gain ,skin bruising etc.

A couple of years ago i had a major flare and with a few hiccups it has taken me about

18 months to get under 7 Mg daily. At 6 1/2 Mg i started to feel unwell, so upped the dose

to 7 Mg

This seemed to clear things up but lowering to 6 1/2 , again i was unwell. I see sawed the dose for some time before seeing my GP, who said she suspected my adrenal glands were lazy , if not completely wrecked.........

Recently i had a tummy X ray and CT scan for an unrelated problem.

Amongst the report was a reference to my adrenal glands that said............

Both adrenal glands are moderately to severely hypoplastic.......

My GP explained this by saying your adrenal glands are stuffed through

long term prednisone use............

So now i have to take for life , a dose that keeps me feeling ok........

This i have to determine myself and for a start have settled on 7 Mg.

At this dose the PMR will , hopefully , look after itself.

Maybe if i had persevered with lower doses for shorter times ,things

may have turned out different , who knows...................

Yeah , so that is where things are at the moment, time will tell...........

1 like, 21 replies

21 Replies

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  • Anhaga
    Anhaga BillyP

    Posted

    Did you ever have a synacthen test where they test to see if the adrenal glands are capable of working again?

    • BillyP
      BillyP Anhaga

      Edited

      Hi Anhaga.

      No i havent .....i have asked my GP about this and she is

      quite adamant that for me it would serve no purpose..........

  • peggy_56092
    peggy_56092 BillyP

    Edited

    I would suggest that you present your problem to the PMRGCA HealthUnlocked forum as that is where most have gone. PMR on average lasts about 6 years for most. Adrenal function test is usually done at 3 mgs. Eileen H goes by PMRPro on the other site and she can further enlighten you. I was on 6/7 mgs for about 4 years and am now down to 3 1/2 at 5 years. Until PMR goes into remission, you will be taking the amount that cleans up the inflammation every morning. The adrenal test is usually given when you reach 3 mgs.

    • BillyP
      BillyP peggy_56092

      Posted

      Thanks Peggy.

      I am going to join health unlocked, it seems like a good idea.

      I have had PMR and been on pred for about 16 or so years,.......

      If i was to try to get down to 3 Mg i think i would be under ground.

      It appears that PMR is not now the main problem.........

      Adrenal deficiency appears to be my main concern, so i have to take

      enough pred to cover that.............

    • peggy_56092
      peggy_56092 BillyP

      Edited

      I found that the below dose tapering plan (known as Dorset Lady's simple taper) worked for me. If I felt any doubts/pains it was easy to stop and start again another week.

      1 WeekSun & Thurs new dose; MTuWFSat old

      2 WeekSun, Tu, Thu new dose; MWFSat old

      3 WeekSun, Tu, W, Th new dose; M, Fri, Sat old dose

      4 WeekSun, Tu, W, Th, Sat new dose;M & Fri old dose

      5 WeekAll days new dose

      The object is to get the adrenals started. Once you have succeeded in dropping 1/2 mg, stay there for several weeks or months, depending upon how you feel.

    • BillyP
      BillyP peggy_56092

      Posted

      Thanks Peggy, .........if it worked for you it may be ok for me........

  • ptolemy
    ptolemy BillyP

    Edited

    Did the hospital realise that you had been on long term steroids where the adrenal glands would not have been working? You are just on the verge of the adrenals starting to work again on their own. I personally think they may be wrong, as they do not seem to be taking into account the fact that the steroids have been producing your cortisol for you. On the other hand I am not a doctor so could be totally wrong.

    • BillyP
      BillyP ptolemy

      Posted

      Because the ct scan and X ray was for an unrelated problem,

      i didnt emphasize the long term pred use .....

      although they were aware of the medications

      i am currently taking that includes pred..............

      Could the glands be close to kicking in again ??????

      My doc says no..........

      I really have no idea...................other than feeling terrible when i get

      below 6 1/2 Mg

    • ptolemy
      ptolemy BillyP

      Edited

      The adrenal glands normally start kicking in at around 7.5mg but could be a bit lower. I had trouble at 5mg and was not too bad at 6mg. I was totally knocked out for several months. I had trouble doing anything. I suppose I just gave into it. I mentioned it to my GP who just shrugged his shoulders. I am amazed how little some doctors know about steroids and PMR. I have an orthopaedic surgeon friend who does not know the difference between polymyalgia and fibromyalgia!

    • BillyP
      BillyP ptolemy

      Posted

      Even after all these years ,this bit is new to me................

      I was thinking of dropping the dose to the point where i dont

      feel too good , but not bad enough to feel really crook and

      continue like that to see if any thing happens................

      What dose are you on now ?????

      How are things going????

      It really is hard to know if your rheumy and / or doc is putting

      you on the right track or not. ............

  • ptolemy
    ptolemy BillyP

    Edited

    I am on 2.5mg at the moment. I think if the problem is adrenals you do need to stay in the area where they need to start working or they just lie back on their laurels and not bother. You then have to go through the whole problem again, when you try to reduce.

    • BillyP
      BillyP ptolemy

      Edited

      Thanks for that pto.........

      I agree with what you are saying...........

  • daisylazy
    daisylazy BillyP

    Edited

    Hi Billy P. I had reduced to 3mg of pred when I suddenly became very tired so I asked for a synacthen test which showed my adrenals were not capable of producing cortisol so have been put on 3mg of pred for life. I never try going below this as I am afraid I would go into an adrenal crisis. Others with the same problem are put on hydrocortisone as it more closely mimics the adrenal production but my endocrinologist said if I was happy on pred I could stay on it. I'm going OK. PMR seems to be controlled or maybe gone. I have been on pred for 6 yrs. Hope that helps.

    • BillyP
      BillyP daisylazy

      Posted

      G,Day daisy.

      Sorry i am late in replying, i had a few days away..........

      You are lucky to get down to 3 if your adrenals are not working........

      Yeah, i think i will stay on pred,

      Over the years.......i have tried other stuff to no avail. .............thanks......

  • Twopies
    Twopies BillyP

    Posted

    i too just had a ct scan for an unrelated problem; report said adrenals unremarkable which i took for a good thing. ive had pmr for 4 years, using dsns, im currently in the process of reducing from 5 1/2 to 5 mg, where i shall stay at least till summer.

    the ct scan did show my bladder had some deterioration of the lining which report said could be due to pmr or interstitial cystitis--ive had terrible bladder woes on pred.

    • BillyP
      BillyP Twopies

      Posted

      G,Day , 2pies.....

      Sorry for the late reply ............

      I am currently on 6.3/4. (with the aid of my good pill cutter).

      I shall taper it down slowly to get to the feeling unwell bit

      then hang on that for a while and see how it goes. .........

      My test showed a thickening of the bladder walls ,

      so am going to have that checked.........

      Thanks....................

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