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ACTH Stimulation Test

Posted , 6 users are following.

liz12234
liz12234

Has anyone had this test and why and did they find it useful!  I am down to 3 - 3 1/2 was feeling really good until i was accidently pushed down the stairs, landed on my knees which have taken some time to recover. For the last 2wks i have had neck ache(never had it when PMR reared its ugly head) when i wake up in the morning and gets better as the day goes on. I also have a really aching hip which is worst after sitting, i have got ostoporosis in it ( had dexa scan 19mths ago). Just wondering if i should continue on the DSNS method and ask for one of these tests to see if my adrenal glands are doing their job. I would appreciate your thoughts.

0 likes, 16 replies

16 Replies

  • Michdonn
    Michdonn liz12234

    Posted

    Hi liz12234, I have not had this test, but could maybe determine whether your adrenal gland producing enough cortisol. That could be the reason you can not reduce the Prednisone lower.

    It is a pain I know, but we will get through it. Good Luck!

  • EileenH
    EileenH liz12234

    Posted

    What you are complaining about is not the sort of thing that poor adrenal function causes. The most usual thing you notice first is extreme fatigue. What you describe is more like the result any of us might suffer from having fallen down the stairs! I remember falling off a bike - not badly - and I hurt and felt shaken for about a couple of weeks! That was at a higher dose than you are on!

    Until the effects of the fall wear off I wouldn't reduce any further and I'd ask for an opinion on the neck and hip pains - because that is the sort of pain that could result from muscle upsets due to the fall. Haven't time to explain it just at the moment but will if you are interested. 

    • liz12234
      liz12234 EileenH

      Posted

      Hi Thanks for your reply, i wasnt actually connecting having the test with the fall it was just to see if things were travelling in thee right direction. It was 7 wks ag i had the fall and only 2-3wks since the neck and hip problem why didnt it come sooner i ask! I do get extremly tired but put it down to PMR and old age(73).
    • EileenH
      EileenH liz12234

      Posted

      I had a whiplash injury some years ago - it took nearly a year before the real follow-up sent my back into free-fall. I'd "managed" in the meantime - backs are very compliant and will soak up a lot of abuse before protesting! 

      If the tiredness is stable it probably is PMR+anno domini. If it increases as you reduce - probably your adrenals.

  • mimi1950
    mimi1950 liz12234

    Posted

    You were lucky you didn't break anything, especially with your osteopenia. Getting pushed down the stairs must have been scarey!

    I was completely over a broken pubis and sacrum , I had no pain whatsoever, but there are days now that I get the same pain when walking or just turning over in bed...not always, just sometimes. I find that after a certain age, joints, muscles, and bones never heal completely after a trauma. Once damaged, they will always "act up" occasionally. I'm prone to falling so I have collected several such permanently damaged body parts over the years!

    When you fell, maybe you hurt your hip and neck as well as your knees.

    • liz12234
      liz12234 mimi1950

      Posted

      I guess i want a quick cure, im used to being active and not in pain. I was lucky or unlucky whichever way you want to be diagnosed quick with PMR i knew the symptoms as 2 friends have it.  Of course the steroids worked quick. They have both been on steroids for 10yrs, this is my third and i   know i shouldnt be thinking it but the end would be really good
    • mimi1950
      mimi1950 liz12234

      Posted

      I know what you mean...three years is long enough! Ive been wondering what percentage of patients that have been on low dose pred for years and years are able to get to zero.

      I recently went to an endocrinologist who told me that prednisone caused havoc on all hormone production.

      Hope you can keep tapering and reach zero soon!

    • Michdonn
      Michdonn mimi1950

      Posted

      Hi mimi1950, info from Mayo Clinic 2013 symposium in Boston. 20% within 2 years, 50% in about 3 years, 30% will be for 3 years or longer. The other note from the meeting, we are not in remission, we are under control. Today I have my PMR under control with Predinisone, still too much, but I taper tomorrow to 20 mg.

      Moving forward with a smile on my face.

      🙂

    • mimi1950
      mimi1950 Michdonn

      Posted

      Thanks, Michdonn..those percentages seem encouraging to me, do they count the years from DX and Prednisone or from the onset of symptoms?

      I was really wondering about the percentage of patients who never get off the Prednisone completely due to adrenal impairment. I hadn't read much about PMR ers getting a ACTH stimulation test, here in Spain, they won't give it to people over a certain age ( not sure exactly).

      I will try keeping a smile on my face, too!

      You are tapering to 20mgs?

    • mimi1950
      mimi1950

      Posted

      Sorry Michdonn, just read on another thread that you had a flare and are now tapering to 20mg..I thought it was a typo and that you meant 2mgs!..

      I'm smiling😁

    • EileenH
      EileenH Michdonn

      Posted

      Can you send me the link for the paper Mich. These figures are similar to some I found several years ago - except the 50% was more like 4 or 5 years and that certainly reflects what I have seen on the forums. But I know a lot of doctors dispute that most of us take more than 2 years...

      Semantics - we are in drug-induced remission. Never anything more until the underlying autoimmune disorder burns out. And try telling THAT to some doctors...

    • EileenH
      EileenH mimi1950

      Posted

      Mimi:  The figures I know from several years ago are 25% are off pred in 2 years or less but they are at a higher risk of relapse at some later stage. About half take up to 4 to 6 years to get off pred and the remaining 25% are on pred for longer, sometimes for life. That certainly fits with what I see on the forums. Of that 25% you have to assume that a few are stuck on pred because of adrenal failure but the local PMR/GCA enthusiast says in his experience most people do get off pred if they go about it slowly enough. The others probably have what is increasingly being described as "refractory PMR". I know probably 10 people who have had PMR for more than 10 years - but I also have heard of people who eventually got off pred even after 11 years or so.

      The ACTH test is really only of any use at pred doses of 5mg and below and all it tells you is whether your adrenals are capable of producing cortisol, not whether they are actually doing so. A single measurement of blood cortisol is totally meaningless if you are on pred - they can save you the needle stick!

    • mimi1950
      mimi1950 EileenH

      Posted

      Thank you, Eileen. I was just curious to know those figures. In my case, due to the pituitary gland, I suspect that I was low on HGH, Thyroid and maybe even cortisol, but since they never offered me a stimulation test, and all the basic ones were in the normal range (except HGH which was zero but "normal" for my age).Apparently, with a pituitary dysfunction, the first hormones to go are the least vital ones but in any case, I do feel 70% better, at least than before predisone, so I'm not worried about any of this...it would be nice if they found I had hypothyroidism or hyperparathyroidism , treated it and finally I los some weight...the thing is, the fatigue is much better which makes me think I only have PMR and that my pituitary gland is producing properly.

    • EileenH
      EileenH mimi1950

      Posted

      Exactly - if you have pituitary dysfunction the adrenals may not be receiving the right signals to get on with making cortisol even if the adrenal glands themselves are in good working order. So even though apparently the adrenals are fine - you still aren't getting cortisol...

    • Michdonn
      Michdonn mimi1950

      Posted

      mimi1950, I am not sure, what I read did not say. Yes today I reduce to 20 mg, on my way down! Smile on my face. 🙂

    • Michdonn
      Michdonn EileenH

      Posted

      Oh EileenH, I really do not know, I am doing everything with my cellphone and just write down information in a notebook. Real old tech. I write some of your responses in my notebook. Sorry!

      😔

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