I was diagnosed in June 2022 and have spent the past 2 years tapering down to current level of 1.5 mg. I have tapered slowly the entire time going at least one month as I decreased and making sure I felt good before trying the next taper. It has been tougher under 7 mg and I have stayed for more than 1 month at next doses. Beginning at 2.5 mg I am using the darn slow taper plus some extra time at the new dose (November to January to get to 2 mg then stays at 2 mg until mid February)
Question: I started darn slow taper in mid February to April to 1.5 mg. Have been at 1.5 mg for 3 months but this time I continue to feel some soreness/stiffness in my shoulders and some fatigue. All are manageable but I definitely do not feel like I can start to taper to 1 mg. How do I know if this is just sluggish adrenals or PMR? My doctor warned me it can take up to a year for adrenals to "kick in". I have an annual exam coming up in November and doctor always does a full workup for blood work. Should I ask him to check my adrenal function? Would this data be helpful?
Thanks for everything - I really appreciate all the input.
Ginger
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gingerraspiller
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Would say its probably a bit of both - stiffness - PMR [too low a dose] and fatigue both PMR but probably more adrenals.. and adrenals can take up to a year after finishing steroids to be back to normal
A blood test will only tell you if they are capable of working, not that they actually are, but it worth asking for just to give you some idea.
But as you have only been diagnosed a couple of years would say
a. you haven't been on that slow a taper, and
b. your PMR may still have a lot of life left in it yet... and whilst pains may be 'manageable' at the moment, they may not stay that way... an small increase in Pred is probably required. Best to do that before it becomes a full-blow flare and a bigger dose is needed.
"A stitch in time saves nine" - applies to PMR as much as anything else in life...😊
I think the data would definitely be helpful at this stage. A percentage of people’s Adrenal System does not recover, even though you have followed an exemplary path. It would be useful to know if yours are likely to function properly. I think your doctor must have meant a full year for Adrenals to “properly” kick in. We are in danger of an Adrenal crisis with an Adrenal deficit. You need to know whether yours have the potential to recover. You could start with a morning cortisol test leading to a Synacthen Test if deemed necessary. I have the advice of an Endocrinologist. Adrenaline problems can make you feel rotten.
When I was first diagnosed following my 4th Covid shot (Moderna) which I’m convinced triggered the PMR, I somehow got in my head that tapering would take at least a year. And initial tapering was no problem. Then as I got below 7.5 mg and it took longer to bounce back, I knew it would probably be another year at least so I’m now at the 2 year anniversary and disappointed and trying to be smart about how I move forward. Thanks again for your advice and support
Unfortunately PMR doesn’t necessarily stick to the what the patient wants/hopes.
It does its own thing -that’s why it frustrates doctors and patients alike. It is disappointing- but you will get there -one day. Just make life as comfortable for yourself as you can until that time. …
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You did very well to get to 1.5 in a couple of years. I did the same, BUT that dose was a little too low and I actually spent several years at or about 2-2.5 mg, occasionally kicking the can to see if I could go lower. Those years included a brief flirtation with zero (lasted about six weeks) a major flare which had me up to 10 for a few days and around 7 or so for a while. But eventually that flare faded, I commenced an ever slower taper, this time listening to my body and not bothering with a schedule. And after some time when tapering from 1/2 mg to zero I forgot to take pred on one of the half mg days and decided maybe that meant I really didn't need it. That was beginning of Feb this year and so far so good, although I know that in some way PMR is now part of me and my life, even if symptoms are in remission. Full confession: I was on pred for approaching nine years in total, but most of that time at the 2 mg level mentioned earlier. My doctor was fine with that. Would have been fine if I'd stuck at 3 actually!
Thank you for sharing your story. My doctor keeps saying he is not worried about low dose prednisone for extended periods of times - years. I have never liked taking medication and have never had to so I am the one worried about the impact of the longterm low dose prednisone. Thanks again.
Me too. Recently had to go to our ER after an injury and they were quite surprised, I think, that this old woman takes no prescription medicine, just a few vitamins! It was also nice to be able to say that after so long on pred. There is light at the end of the tunnel and meanwhile enjoy the quality of life pred allows!
I don't think there's one single person on this forum who doesn't share your thoughts on taking medications. All of us were on no medication at some earlier point in our lives and I'm sure all of us would have preferred to stay that way too.
However, all of us here are now at a point where we don't have a choice regarding the prednisolone (some other medications - possibly yes) and I, like many others, have had to completely change my mindset.
Some medications I've been offered I've politely refused, because with little if no evidence to actually support the immediate need for them, I couldn't agree to taking them. (For example- omeprazole, gabapentin, pregabalin, amitriptyline, Alendronic Acid... but only after a DEXA scan)
I maintain an open mind though, with an understanding that circumstances may change in the future and therefore one or more of those medications may then become necessary.
Unfortunately, prednisolone is the only medication/treatment that could ease PMR symptoms and restore a more manageable quality of life again. So...I now treat steroids as my ally & not my enemy in my recovery. I've been on them for over 5yrs now and I'm currently on 2mgs, tapering using the DSNS method. Once I reach each new lower dose I stay on that dose for at least 6 to 8wks, & till I feel settled and stable on that dose.
I've actually been on 2mgs for 3mths as various 'situations' in my recent life have not meant it sensible to begin my next taper just yet.
As HeronNS mentioned, a successful taper is so much more about listening to your own body and not about following a regime.
It can be very frustrating but you'll get there eventually.
Patience is the key.
Wishing you good luck and increasing success with your tapers.
That's quite a list of meds you've been offered! Before diagnosis I was offered Celebrex, but already knew it was the only one left in a class of drugs of which all the others had been taken off the market, and never filled the prescription. When Naproxen was still a prescription drug I'd been taking it for migraine (miracle drug actually) but when it started to bother my stomach I was prescribed something to protect my stomach, no memory of what it was, but that was when I decided enough was enough, seemed senseless to have to take second med to protect against effects of first. Admittedly I was a lot younger then and the condition was not a life-threatening one. Things do change as we age and the body starts to malfunction....
Side note: GP asked me about pain control when wrist fracture new and prescribed some more Tylenol3 as I'd used up the six they gave me to bring home from ER. Thought he'd prescribe maybe 10, but it was 40! About 32 of which remain in the bottle, although I was glad to have them on hand when struck by worst headache in years. Went to pharmacy to check on expiry date. 2028, so think I'm set for life.
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