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

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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

    "My take is that for most of us, we will be taking some pred for the rest of our lives"

    No, I think that is incorrect - and of the hundreds of PMR/GCA patients I have come across on the forums in the last nearly 7 years, only one has had to remain on 5mg of pred because of adrenal insufficiency (and she has already posted). Almost everyone who is using/has used the very slow reduction that we in PMRGCAUK recommend is able to reduce to well below 7mg - the point at which you are entering the "grey zone" for want of a better way to put it in a nutshell. And quite a few have reached 1 or 2mg or even lower already and disappeared off the forums. 

    Anyone who is able to get down to well below 7mg in the first place without any problems must have SOME adrenal function. If they are then able to reduce even further without increasing fatigue then the chances are that it is recovering and I have written several times that the greater problem is not that the adrenal glands are unable to PRODUCE the cortisol but that the HPA axis (hypthalamus, pituitary, adrenal axis) is unable to stop its swinging backwards and forwards as a combination of several hormones has to achieve the right balance for everything to work well. So, the slower the reduction the better.

    But as Nefret says - what does it matter if we have to stay on pred because we don't regain full adrenal function? If your adrenal glands aren't producing cortisol then the daily dose of pred as REPLACEMENT therapy means you are fairly unlikely to develop side effects - side effects result from an EXCESS of the corticosteroid, by definition if you are taking less than 7mg and your adrenal glands aren't producing any there isn't an excess.

    Though it is interesting to me that they say that a relapse of the disease the pred was being used for is likely if you try to go too low when adrenal function is compromised. Last summer I tried to go below 5mg again - not because my GP was pushing me to but because we are conditioned to believe we can get lower ir even off and after 6 years it would be nice! One less bunch of tablets was very attractive. I was still fine at 4mg and I tried another 0.5mg - only to develop increasing fatigue, not horrendous but certainly enough for me to decide finally that I would go back to 5mg where I felt really well and wouldn't bother to try to reduce for a very long time. 

    Since then, a few months later, I have suddenly developed what is almost certainly a flare. I also probably had had an unrecognised urinary tract infection. But the flare has manifested very unusually at first - from one day to the next I couldn't walk up a slope without getting breathless and that was what sent me to the doctor. Antibiotics for the UTI  worked a miracle for a week and then the flare was back in the form of increasing hip and shoulder stiffness which we took as fairly conclusive! I'd started wondering recently if that was what had triggered the flare but had dismissed it as the ramblings of a non-endocrinologist! I doubt there are many non-endocrinologists who'd even think about it under normal circumstances - and the local head honcho told me a few weeks ago that in his experience everyone gets off pred if they go slowly enough.

    It is, though, very obvious to those of us who've been at this for a relatively long time that the longer you have PMR for, the more difficult it becomes to reduce to very low doses. 

     

    • Posted

      PS Paul - can you please send me the link for the article by private message?
    • Posted

      As always, Eileen, I come back to your wisdom...because of your knowledge, intelligence and your own personal experience with this!

      reading Paul's remarks I was remind of the pituitary issues I had throughout my 30s and 40s...no periods, etc...but did have 3 children.

      There was no pituitary tumor, but my pituitary was not functioning properly. Then my thyroid was totally under active. Seems logical that my adrenals would stop working. Will have the adrenal function test when I get back to the states next month...see what that turns up.

      thank you again for the time you spend on this forum!😊🌺

       

  • Posted

    Since I've had GCA for almost seven years with four flares you would think I would know how to taper but these crazy autoimmunes keep challenging the body. In addition I'm on Actemra and I don't know how that will effect things. I had PMR with one flare about four years ago but with very high pred it hasn't flared again. I'm at 20mg pred from 80mg with .8MTX. My rheumy usually starts me at 60mg but that wasn't working. Wed. I see my rheumy after 4 weeks and if my markers are good she will probably reduce me. She does ask for my input which I'm grateful for. I wouldn't mind going very slowly but my spine is in really bad shape (hard to walk) and the pred is bad for bones. I have scoliosis (diagnosed at 12yrs.) with back and leg pain and therapy all my life. I'm also dealing with OA in my hips and stenosis and OA in my spine. The huge weight gain with the pred is making things worse. I'm also out of breath with this big belly. I lost 30 lbs. fairly quickly on the last flare when the pred came down. Actemra should help me reduce the pred but it's not FDA for GCA - just RA. I don't know what to do. 15mg pred? 17? Any thoughts? Jan
    • Posted

      I imagine the reason your rheumy has put you in Actrema is that he's used it in the GiACTA trial which is about to report and been impressed (though it is supposed to be a double blind study) - so he may also have an opinion on how to reduce the pred dose alongside it.

      I am very much of the opinion that the smallest change you can make is the safe way - if 2mg doesn't work, 1mg might have. And 1mg done twice a couple of weeks apart is the same as 2mg in a month.

    • Posted

      On the weight gain...congrats on the 30 lb. loss! I have also had weight issues. My rheumy simply told me to figure out how to get rid of about 40 lbs! So I remembered what I learned from weight watchers and have lost 7 lbs in 7 days...no snacking, counting points, and drinking a ton of water. My doc is right...the weight adds a huge risk to all our other issues. We are now comrades in "weight" spirit...keep trying. Ann11195
  • Posted

    Thank you, Paul, for passing on this information! It makes sense to me that substituting a hormone for a hormone that the pituitary should be producing can cause problems in the long run. Also, it seems it is not unusual for people with PMR to have-had pituitary issues (menses for worms), and thyroid issues...like the major "master" glands were not functioning properly before the PMR....so we are treating the inflammation, but not really solving the problem. I think I have accepted that I will be on some dose of prednisone forever...it's the pacing myself that is driving me crazy.

     

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