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Pred and Adrenal gland operation.

Posted , 8 users are following.

BillyP
BillyP

Even though i have had PMR for a long ,long time and have been on pred for 16 or so years,i am now in uncharted waters. From my last flare it has taken me over 2 years to come down from 10 mg. to under 7 mg. (1/4 mg monthly on the dsns scale with a couple of set backs. ).Once under 7 mg i dont feel too good at all, mainly fatigue ,head aches etc. It just does not seem like a PMR problem to me, more like a pred withdrawl symptom.So i am thinking an adrenal gland problem. My doc says definitely the adrenals , and no need for a test that involves a stay in hospital and is not too cheap. So, what to do ............... i am told it may take a year or two to kick them into gear, or they may never recover.Now i am on 7 mg and feel quite good, so i am going to stay on that for 6 months then drop down to 6.5 mg and see what happens, if all is good i will stay at that for a while before dropping further.if things go pear shape it is back to 7mg for another 6 months. At the worst i may have to stay at 7mg for ever ,( barring incidents , of corse )..................time will tell i guess ,,,............. .

0 likes, 8 replies

8 Replies

  • Michdonn
    Michdonn BillyP

    Edited

    Hi BillyP, you are at the point that I have had the most problem at. Had several flares at 8 to 7 mg level and felt terrible. Nice an easy, small reduction using DSNS, never reducing if I had any PMR pain. Sometimes I thought I ever get lower. Now on 1.5 mg tapering to 1, feeling good. Good luck on the rest of PMR journey, try to stay active, positive and smile, it helps. 🙂

  • alebeau
    alebeau BillyP

    Edited

    Thanks for posting this as I am only on my second year of PMR and just making it to 10 mg via dsns. Previously the doctors had me reducing much too quickly and I paid the price each time. Based on your long voyage I am more at ease now continuing my slow journey at reducing by .5 mg at a time and when I hit level where I am feeling those familiar aches and pains returning I will level off for a while at at the next highest level that gave me relief. I was feeling like I was being too cautious but now based on your post I have new confidence that the slower is better method is the right path right for me.

    Good luck to you, 16 years is a long time to have to deal with all this.

  • EileenH
    EileenH BillyP

    Edited

    The only thing that will trigger return of adrenal function is being on slightly too low a dose of pred - so to some extent it is right to put up with a period of fatigue to let it start to wake up by being poked by the system. Difficult to say - 7mg may not be quite low enough to trigger them enough.

    There is no point in the synacthen test until you are well under 5mg, preferably 3mg. I assume you are in the US? In the UK it is done as an outpatient, takes either under an hour or up to 3 hours if you get the longer version.

    • BillyP
      BillyP EileenH

      Posted

      Thanks for the replies everyone....... GDay Eileen........... What you have said is spot on,................I had a month on 6.5 mg after the fatigue set in and got tired of feeling so lousy, so i went up to 7mg and it cleared up.In saying i am going to stay at 7mg for 6 months is not quite correct, what i have to do is find a point between 6.5mg and 7mg that (as you correctly say, needs to be a dose that leaves me slightly unwell to try to get the glands hopefully, to start to kick into gear). I have to find a balance between feeling unwell and being ok to carry out my daily life.

      This is where self medicating comes to the fore and only a lot of experimenting gives you an idea of what dose is required. Your Rheumy or GP would be hard put to give an answer to this question. I appear to be very sensitive to pred dose changes , others may not be so sensitive, this is one reason why most people require different doses, methods etc..... So that is my mission for the foreseeable future. Eileen,,, I live in good old aussie land where we are 2 weeks into coronavirus partial lockdown.At the moment our main spreaders are cruise ships and back packers plus an influx of tourists trying to return home. ..............................................................

  • karenjaninaz
    karenjaninaz BillyP

    Edited

    i found going down 1/4 mg easier to tolerate at lower pred doses. I use a mini pill splitter after breaking a 1mg pill in 1/2.

  • Tinapoly1
    Tinapoly1 BillyP

    Edited

    Hi Billy, I thought 2.5 years was a long time on Prednisone but 16 years is devastating to hear. I have had major complications in this time on it like just standing up from the couch & taking one step & I felt & heard a pop & was limping just a few feet & went back to the couch . Three hours later I got up & limped just 10 feet into the kitchen & screamed in agony as half of my calf muscle completely tore off the bone. They don't do surgery unless the entire muscle comes off. I had 2 bladder & urethra surgeries since the Prednisone had caused me to become incontinent & I wouldn't even feel it come out or feel the need to naturally hold it. When I had the surgery I asked the doctor why I was so bruised up in my front pelvis. Both times I had surgery he had to do micro surgery & sew me up from the outside in since the stitches tore through my flesh inside. I lost 95% of my thick ,long hair but what bothers me the most is looking & being so fast from the Prednisone. I was so thin my entire life & in no time I was up 55 lbs. & I eat like a bird so it's all fluid. they finally put me on a water pill because I couldn't get my shoes on. I dropped 15 lbs. fast but the other 40 is here to stay I guess. It took me 18 months to go from 7.5mgs to 5 mgs.that I have been at a long while. I got the flu 2 times in just 3 months & I thought with both that I was going to die because my lungs were filling with fluid so fast & I was put on 5 meds. .This is before Covid 19 so that would surly kill me since my immune system is pretty much gone from long term steroids. I also got a strange illness for 33 days with electric like shocks going in about 6 inches with each nerve that was involved. At times it was every 5 seconds that several nerves in my chest, then my back, & then up into my head were shooting excruciating shocks into my body & brain. I finally went to the E.R. after 9 unbearable days of the 33 that it lasted & the doctor said he had seen others with identical symptoms but they don't know what it is & it is on both sides of the body so it wasn't Shingles. This too was because my immune system is shot. My Endocrinologist said if I ever go into remission that it would take a full year for my adrenal glands to grow back. My skin tears or bruises so easy but that doesn't bother me. Because of the recent & severe illnesses my rheumatologist said you have to go off the Prednisone . He said go month by month from 5 to 4 to 3 to 2 to 1 & off. WHAT ! He forgot I could only go down 1/4 mg.at a time & in 2 days I couldn't walk without extreme pain when I went to 4. I tried 1/4 for a long time but even that was causing me pain for 2 months so I went back to 5mg. . Best wishes to you ! Tina

    • BillyP
      BillyP Tinapoly1

      Posted

      Struth Tina, You are really having a bad time...........I have been lucky , as i have had little in the way of side effects other than skin bruising and always needing a pocket full of bandaids, But it took years to get the pred doses sorted out as i knew nothing and at the time

      my doc and rheumy were in the same boat. At times i just couldnt get out of bed, now all thathas passed. You can have a lot of problems that you may think is related to pred, but may not really be the case. But how do you tell????One of the main things is , once you get to a dosethat clears things up dont be pressured into tapering too quickly, from 10mg down , slowlyis imperitive .If i could get to 5mg that would do me for ever, ...............all the best................

    • Tinapoly1
      Tinapoly1 BillyP

      Posted

      Hi Billy, Thank you for your note. I went back up to 5mgs. since 4.5 was making me struggle everyday with even slow walks. My body sure lets me know what dose to stay at for a while. I'm just worried because of the pneumonia that I got for the 1st time in my life in late Oct. & again in January. Both doctors said you are loosing you immune system even while you are at the good dose. Take care, Tina

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