As I am down to 51/2 mg red, I began to wonder if I was regaining any Adrenal function.

Posted , 20 users are following.

I was going to ask my Rheumy to order a test and decided to research the test name and procedure. This led me to a reference of the NADF which is the National Adrenal Diseases Foundation here in the US. The part of their extensive material available that i landed on was an article by the director about secondary adrenal insufficiency. I hope the content of a few parts of it that I quote here will bw worth your time. To simplify, before quoting, the references to ACTH which is produced in the pituitary are key to the process. This hormone controls the prodution of cortisol by the adrenals. the following extractions were the most pertinent to me.

"The most common cause of suppression of ACTH is the use of glucocorticoid medications to treat a large variety of illnesses. Glucocorticoids are steroid hormones that act like cortisol. They include cortisone, hydrocortisone, prednisone, prednisilone, dexamethasone, as well as intravenous, intramuscular, inhaled and topical "streroids". All of these medications have an effect on ACTH because the pituitary is producing this hormone in response to the body's need for cortisol.When the cells in the pituitary recognize any of these drugs, they sense that there is cortisone present and therefore produce less ACTH. This ACTH suppression from glucocorticoid medication can be very temorary, prolonged or permanent depending on the dose, potency and length of use of the medication. For example, a few days of prednisone will not produce a significant problem, but several weeks of prednisone at a dose of 10 mg will diminish the cortisol level and the ability to fight a stressful situation. Recovery of the pituitary-adrenal response after use of a suppresive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year or may not occur at all."

"Once glucocorticoids have been tapered to below 5mg of prednisone, dosing for stress such as illness or surgery is still needed until there is full recovery of adrenal reserve, typically using a guide of one  month for each month that steroids had been used. The most difficult issue is that symptoms of adrenal insufficiency will be present during the tapering phase, because low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsivness. The longer high dose steroids were given for a disease like asthma, rheumatoid arthritis, polymyalgia rheumatica or inflammatory bowel disease, the more likely that individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids. In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucccorticoids, followed by a slow attempt at tapering if the primary disease is in remission."

I hope this is of some interest as it involves all of us. My take is that for most of us, we will be taking some pred for the rest of our lives. I'm sure some of you allready have made this aasumption. The main point is that our GP's or Rheumy's are bent on going to 0 pred when they must know the information I have just quoted.

 

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  • Posted

    Thank you for such useful info. My optimistic part hopes to get off pred eventually. My rheumy now understands the very very slow reduction method. Again thanks for your concern. Ann11195
  • Posted

    Paul,  I am 53 days without Prednisone, which I had taken for almost a year and 1/2.  I am still in pain.  My rheumatologist nsuggested Aleve and did not want to give me more prednisone.  The problem is each time I had blood work it was always "normal" and therefore I don't think they believed me.  I was told clinically it acted like PMR but .... No elevated labs.

      Aleve is also not a good drug to be on for extended time plus it doesn't complete take away the pain or stiffness or sick feeling.  

      I've read about adrenal  insufficiency...  

    I'm really at a loss as to what to do or who to believe...

    • Posted

      Ask your GP for a referral to another Rheumatologist.

      If the first Rheumatologist thinks PMR goes into remission after 1 year just because your 'bloods are normal' - he does not understand that people can and do have PMR and neither their CRP or ESR are ever raised.   Did he follow the BSR guidelines on the Diagnosis and Treatment of PMR, which can be found on this site and also on the BSR site.

      You need to gain knowledge and have a serious talk with your GP and read those guidelines and print them off and take them with you and book a double appointment with your GP - try and get the last two appointments of the day.

    • Posted

      I suggest you get on your computer and do as much research as you can. Be as informed as you can.  I changed Rheumotologist because he wanted me to see a psychiatrist.  I am not degrading anyone that needs psychiatric help, but it wasn't what I needed.  And this Dr. came very highly recommended, but I changed Dr.'s anyway and am very glad I did.

      I'm sure my PMR has been in remission before and my sed rates weren't normal.  You might check on Amazon and see if they have any good books on PMR or try your local library. I hope things get better for you.

       

    • Posted

      My sister is now in the process of changing her Rheumy, and has been told by the hospital (N&N) that she has to start right from the beginning again, and wait....how can that be right, have you all been told that,  who have changed them?.....and how long did you wait to see another rheumy, thanks for any replies....rolleyes
    • Posted

      I don't think you meant this reply to me. If you did, I can tell you I am in remission from GCA (past 6 years).  I also help to run a charity for PMR and GCA.

      As to books their is one, written by patients for patients and medically checked called  'Living with PMR & GCA'  they are available to purchase.  If anyone wants one, send a PM for details.

  • Posted

    I've made up my mind that I will be taking pred for the rest of my life.

    I'm 79 and after three years of up and down understand that this

    is a long process that may never be resolved.  I'd be happy to just get

    down below l0mg per day and be pain free on that....

  • Posted

    Hi Paul,

    Thanks for the info. I am also at 5mg for the past week after a very slow reduction.  I have asked my GP for an adrenal function test to see if they have kicked in again. I was at 4mg at one point and when I tried to reduce to 3.5mg I had a major flare. It was only a 1 1/2mg reduction over three weeks but it resulted in me having to go up to 10mg. I was not happy to say the least. 

    My reason for the adrenal test is to avoid any problems I might have when trying to reduce further. I think that last time, although I felt good, my adrenals hadn't had a chance to recover enough.  We'll see how it goes. I am not on a mission to get to 0 but would like to find the lowest dose that will manage my symptoms.

    I believe your blood work will be normal because the dose of prednisone is managing your inflammation.

    We need a lot of patience with this disease but never be resigned to a fate that is unknown.  

    Take good care of yourself and listen to your body.

    Diana🌸

     

  • Posted

    Excellent information. Thank you. I had expected that once I decreased prednisone below 8-10 mg I would know immediately if I had recovered adrenal function. I guess I should expect a year.
  • Posted

    Thank you, Paul.  Very helpful.

    I have come to the conclusion rheumies can't/won't read! (Last few words of your post)!  They have 'studied' PMR so they don't need any more info.

    • Posted

      Yes Constance I get the same impression , mine said they don't know much about it ,and I got the impression he wasn't doing anything about it after I discovered this site because there is a wealth of information on here from the people who know best the sufferers they should be listening to us , I sometimes feel as if people think it's all in your head .
  • Posted

    That is great information Paul I was tapering and got down to 6mg pred I had one day at 5 & a 1/2 and was going to do really slow tapering so many at old dose then new but I had a flare and had to go up to 10 mg I am hoping to start reducing after two weeks at this dose . It is hard to know if it is the pmr or the steroids with half the things that happen but looking back before this flare I had slowly been going down I was so tired and drained no energy for nothing then the pain started creeping in till I couldn't cope , after a day at 10mg I felt "normal" again , now I am wondering if my adrenalin will ever kick in again and will my rheumy know this . 

    Thanks again paul

  • Posted

    I'm not sure that I understand what all the fuss is about.  I was diagnosed with secondary adrenal insufficiency a couple  of years ago and will be on steroids ad infinitum.

    It doesn't worry me, it doesn't worry my Rheumy, but I am now 71 and while it might be of concern to the younger patients it really isn't the end.

    Mine was a foregone conclusion, having been diagnosed at the age of 57.

    And there are many young patients with autoimmune diseases on very hefty whacks of steroids, who also will never be able to throw the Pred away.  So don't give up hope!

     

    • Posted

      Hi Nefret!  Hope life is treating you well.

      It's the rheumies and doctors that worry about Pred.  If they had PMR/GCA themselves I'm sure they wouldn't be loathe to staying on it if it relieved the pain.

      I'm convinced most of them just don't believe PMR is a particularly bad illness (most of it is in the mind anyway!!!!!!!).

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