PMR Exhaustion
Posted , 18 users are following.
I've had PMR for about 10 months now. I was started on15mg of pred and am currently taking 7mg/day. My pain is not completely relieved, especially in the morning, though it is not unbearable. My main issue is chronic exhaustion day after day. I am wrung out to the point where I just don't feel like doing anything and that has severely constricted my life. Has anyone else experienced this and if so is there anything that can be done about it. For me, it is really horrible to have to live this way.
0 likes, 72 replies
henni05917 andrew45077
Posted
Hi Andrew yes that's why l want off of this. Yes in the beginning at 15mg my pain was gone in a couple of weeks but as l taper and l am at 7.5 l have horrific headaches and am exhausted. can't wait to be done with this.
lynda62707 henni05917
Posted
I'm wondering why sooo many of us are so adamant about wanting off of prednisone (WAY too many horrible side effects) and why others are very o.k. with this drug?! very curious how there's such a divide in opinions/and experiences!! hmmmm?!
peggy_56092 lynda62707
Posted
If your pred dosage is not enough to control the inflammation, PMR symptoms take over. Some drs recommend staying on one dosage for months, years, if it is controlling the symptoms. Remember, average PMR stays for 5.9 years. There should be no rush to get off pred. only to suffer increased PMR inflammation.
Vicki200252 peggy_56092
Posted
thank you
EileenH lynda62707
Posted
To some extent it depends on whether you had PMR badly enough in the first place - pred gave me my life back after 5 years of unremitting pain and disability. Most pred side effects can be managed when you know how - but it does require you work on it and undertake some lifestyle changes. No-one said it was easy - but for a lot of us the benefits outweigh the downsides by a considerable margin so we do it.
EileenH henni05917
Posted
Then you have probably got to too low a dose to manage the inflammation - you have to take enough pred to achieve that. Or possibly your adrenal function has not caught up with the reduction in pred - and that will cause severe fatigue. If you need more pred to manage the PMR, then reducing further will just lead to worse symptoms. Until your adrenal function catches up, reducing the pred will make the fatigue worse.
henni05917 andrew45077
Posted
l went from 10mg to 7.5 as ordered by doc. After a few days pain in neck started. Went back to 10. l will try 8.75 next and see how l do then. l know l am wanting to get off this stiff too fast but l just feel horrible. The headaches and shaky feeling are horrible. anyone else having these side effects.
lynda62707 henni05917
Posted
Absolutely henni...I've both of those PLUS many more!
the really sad thing about prednisone is, you don't know WHAT side effects you'll have until you're on it....by then, it's too late! You're caught up in the whole "web" and can't just GET off!😖
this is Truly unlike any other medication (both good and Bad!)
Vicki200252 lynda62707
Posted
Exactly Lynda!
nick67069 henni05917
Posted
You may wan to go in 1mg steps. The rule that is often repeated on this forum is that reduction should not be more then 10% of the dose. Also it helps to use gradual reduction (DSNS method)
Anhaga henni05917
Posted
Are you now all right at 10? IF you are, then try a 1 mg drop, and do as Nick says, use one of the slow taper versions which allow your body to adjust. It isn't slow if it works. You will avoid relapses and flares, and in the end take a lower lifetime dose of pred than if you had followed your doctor's well-meaning but mistaken suggestion to drop more quickly in too big steps.
henni05917 Anhaga
Posted
Thanks Nick today l took 8.75mg. l will see how that goes.
Anhaga henni05917
Posted
It is advised to never drop by more than 10%. From 10 mg that is 1 mg, not 1.5. But good luck anyway! The lower your dose, the smaller the taper, and the longer you need to take between tapers.
missmagwumps andrew45077
Posted
Has anyone ever tried an adrenal support supplement for exhaustion while reducing Pred...just curious if it would help or whether it's not to be recommended while taking steroids......
TBH I am seriously tempted to come off pred as quickly as I can and see if my pain increases again as I have said many times I don't think I had PMR - just an inflammatory condition of some sort but my CRP levels are now about 3 from 51......if I don't succeed I will just have to suck it up and get back on a higher dose of Pred and start the process again. My gp is with me whatever I want to do/try but forgot to ask her about supplements while achieving this.....am fed up with just laying in bed all day, sleeping with no energy to get up and go - I am worse than I was before but without the muscle joint aches and pains but can always go back to pain relief for those when required.
I have had similar symptoms to many on here but nowhere near as bad as most of you and mine was just lower limb pain on waking and a general malaise with overall body aches and pains but then my Vit D was very low too! Have got myself into such a minefield here...what a quandry!
Anhaga missmagwumps
Posted
You should post this as a new post.
mary19068 missmagwumps
Posted
Hi missmagwu....
When i came off prednisolone i tried adrenal supplements but they made me feel nauseous. I tried to go with it but to no avail. I tried for approx one month and stopped them. I didn't find that my energy was any better. So i started eating adrenal support foods of which i cannot remember what they were off hand. You can look them up on google search for 'food for adrenal support'...i then just continued on my way through withdrawals and pain which eventually abated and was left with OA (and Post Herpatic Neuralgia (PHN) after shingles due to immune system being suppressed by preds. That was 1 and a half years ago and the rest is history. It can take up to 2 years for your adrenals to be up and running 100%.....
EileenH missmagwumps
Posted
I haven't, I wouldn't - there is no evidence at all they will work whatever the sales people try to tell you! The adrenals aren't working simply because there is enough corticosteroid for the body's purposes. Just like the central heating boiler doesn't produce more heat while the wood burning stove is still burning.
Your CRP is low because the pred is doing what it is meant to - suppressing the inflammation that raises the CRP level. If you don't have PMR you will be able to reduce steadily and relatively quickly to zero without the symptoms returning. Apart from the waking up of the adrenal glands. But that is a different kettle of fish.
missmagwumps Anhaga
Posted
I did think about that but as we were (Andrew) was on the subject of exhaustion I didn't think it would make a difference...sorry....x
Anhaga missmagwumps
Posted
I just thought you'd get more replies if you posted a new thread. This thread is only being seen by people who followed it at the beginning and new people are coming into the forum all the time. Sorry I was a bit abrupt - had to leave computer and didn't really have time to explain.
missmagwumps Anhaga
Posted
no problems - every it of information helps - thanks x