Now that I’ve been on prednisone for almost 13 weeks, I’ve noticed that some of the negative effects from the prednisone are quite strong at times. The fatigue, upset stomach , headaches, and balance issues started just a few weeks after starting the prednisone. Luckily it’s tolerable so far. I have been wondering about the tapering off of the prednisone. It almost seems as thought you go through withdrawal symptoms from an addiction to it. Are the symptoms related to the lack of cortisol or control of it? I noticed that when I’m on the elliptical trainer at times my legs feel so heavy and fatigued it’s difficult to keep up my regular pace. Yesterday the fatigue was there again for about 15 minutes and then it was like either the Adrenalin kicked in or the prednisone as the last 15 minutes I kept pushing and the fatigue left and everything was strong agin. I wondering if my Adrenalin glands might be still working somewhat? I guess I’m trying to figure out if prednisone is a stimulant, suppressant, or possible addictive drug. Either way getting off it as soon as possible seems to be the goal of controlling PMR.
Adrenalin glands still working or is it Prednisone - PMRGCAuk
Adrenalin glands still working or is it Prednisone
Either way getting off it as soon as possible seems to be the goal of controlling PMR.
Not it’s not, being in the correct amount of Pred is the way to control,it.
As for adrenal glands - the link explains what happens to them when you are on Pred under paragraph -
WHAT HAPPENS WHEN YOU ARE ON STEROIDS?
healthunlocked.com/pmrgcauk...
Thank you, the link is very informative and I think I’ve finally got it straight in my head.
I like your WHAT HAPPENS WHEN YOU ARE ON STEROIDS
I recently was told by my rheumatologist that exercise can aid in adrenal function.
That might be good information to add to your link. I haven’t taken the time to google that advice but I am now finally at 6 mg prednisone and exercising twice a week. Previously I always had difficulty passing 10 mg. Additionally I am under less stress and I know that is a big factor in managing PMR
Let me know your thoughts
Thanks
"exercise can aid in adrenal function" - really? How?
I agree this
pmc.ncbi.nlm.nih.gov/articl....
says it can - BUT it is in teenagers/20s and it is (I think) misleading in calling what they are looking at "adrenal fatigue". There is a world of "woo" that is based on selling supplements to deal with "adrenal fatigue" - a condition of exhaustion that is due to your adrenal glands having been worn out by the stress of modern living. Your adrenal glands don't "get tired" in that way.
Exercise is good for us, in all sorts of ways and it often makes you feel better - though I have yet to experience the rush of endorphies they go on about!! But in many cases, acute exercise DECREASES cortisol production. In the normal, non-pred taking, subject who is under a lot of stress, exercise will improve cortisol levels - by reducing it. But that isn't what we want.
It is a complex relationship as this study indicates
pubmed.ncbi.nlm.nih.gov/236...
and you have to bear in mind that overtraining for us is very very different from overtraining for a healthy person who is fit and "trained". Our body are severely impaired, both by the disorder and the medication for it.
I agree with you on overdoing it especially at our ages 76 for me.
I am being prudent with my goals to achieve better adrenal function and I am only doing exercise twice a week geared for seniors - I go to a senior centre for this - very convenient and affordable.
So far I have had the best success ever in the reduction of prednisone.
The bottom line is do what you can and go slow so you don’t injure yourself.
Thank you, being in the middle 70’s sure isn’t like it was in the 60’s. With a total right knee replacement and a torn meniscus and close to bone on bone in the left, it’s a real challenge getting the cardio exercise in. I’m use to walking 2-3 miles a day now that has been reduced to walking around in the grocery stores and Home Depot. If I do choose to replace the left knee, I will have to be off the prednisone first I think.
Depends on the surgeon - often discussed on the forum. Some will operate at up to 10mg - other demand you get off.
Thank you, it must be the infection risk. When I had my first rotator cuff repair, I got a really bad infection at the incision site. The Surgeon put me on CEPHALEXIN 4x a day for 30 days. I was afraid it was MERSA but it did finally go away but left a large divet in my shoulder. He never sent any of the smears or tissue to a lab to identify what it was, but I’m still very concerned about surgeries ever since.
Don't blame you - it is a problem if bugs get into the joint. But if I had to wait for a prosthesis until I was off pred, I'd never get it. I wouldn't be fit enough to do the post-op rehab and that is crucial
I think I would want more than ‘was told by my rheumatologist that exercise can aid in adrenal function’ - most of the information in the FAQs comes from published articles. Provide that, and it may be added..
Thank you, you’re up early this morning . Must be the fresh air. Prednisone has whacked out my circadian rhythm big time. I’m up all hours of the day/night now. I hope I can get back to 5-6 hrs of sleep a day soon.
I’m in New Zealand at present -so it was around 9am when I replied 😊
That’s perfectly reasonable
I can ask my rheumatologist if she has any published articles next time I see her
Thanks
Please do…
"Either way getting off it as soon as possible seems to be the goal of controlling PMR."
No - totally the wrong way round. You need the amount of pred you need to control the amount of inflammation present, You start with a dose that is too much - and taper to identify the lowest effective dose. If you get OFF pred and the underlying disorder is still active, you won't be controlling the PMR. You control the PMR USING pred, not without it.
PS forgot the addictive question. Pred in itself is not an addictive drug as is usually meant. Your body can. however, become physiologically dependent on it.
The human body requires some corticosteroid to function properly, this is called a physiological level. Normally it is provided by the production of cortisol by the adrenal glands, stimulated by the HPA axis (hypothalamus, pituitary, adrenals) and if that well-regulated system becomes deranged, you become ill. In the case of over-production, you can develop Cushing's Disease and in the case of underproduction you develop Addison's Disease. In the presence of an adequate supply of an external source of corticoateroid (exogenous) corticosteroid (pred dosing), production via the HPA axis is suppressed to avoid increasing the level any further since excess steroid causes problems.
Suppression of this sort over extended periods may lead to the adrenal glands struggling to readjust when the external source of corticosteroid is lessened to below the physiological level or removed altogether. If the level of corticosteroid in the body is too low for normal functioning of the body, this leads to adrenal insufficiency which can make you very sick and, if not treated, can be fatal. This is the same as being dependent on pred - but is not addiction in the same way as illicit drugs.
Thank you Pro, I am staring to get this straight in my head now. The management of prednisone is much the same as my warfarin ( too little, blood clots, too much bleeding events) should the adrenals not return to normal function would that require Prednisone’s regulation for life?
Not sure I'd compare it to warfarin but I suppose it is in a way. If you have no adrenal function after long term pred you just usually get a standard replacement dose though, 5-7mg is a common maintenance dose, It isn't quite the same as titrating the dose to manage PMR symptoms.
Thank you it’s reassuring to know it can still be managed should that happen.
As I understand it we taper pred slowly for three reasons, 1 to get to the correct level for us to function and control pmr, 2 to give adrenals a chance to catch up with drops, specially at lower levels, and 3, the disease does usually burn out, a slow taper may give it time to go by itself, in which case we can get to zero pred ..... I don't think its addictive, is it? But I'm a simple case so far, no side effects to notice. Sadly blood sugar up, but trying to limit carbs for that. I do find if I push myself physically I have to do very little the next day, pacing is important.
Thank you, I hoping I will be a simple case and PMR will burn out and not return for many years.
Pacing is key, it's not a case of just taking the Pred and carrying on as before as overdoing it can cause fatigue and more muscle stiffness. Exercise is another thing you have to get in balance
Than you, at my age the “ Use it or loose it “ syndrome is very real so I’ll really have to look at it in a more critical way now.
Where did you get your information about PMR and prednisone’s effect? Some doctors are guilty of muddling their patients with ‘get off steroids as quickly as possible’. The mantra of PMR is rest, rest, rest. PMR is life changing and cross trainers should be considered carefully. You cannot carry on as you did before you became ill. Take it slowly or the PMR will turn round and bite you.
Thank you, I did got nipped with the sore muscles when I dug a water pipe and shoveled snow from a storm a while back. The stiffness and sore muscles lasted a few days so I won’t try that again. I’ve always subscribed to the “ keeping fit”, helps keep your quality of life longer. Hopefully I can find the right balance to keep some of the Fittness and still fight the PMR.
Somewhere on the PMRGCAuk website there is a specially commissioned guide to Exercise and PMR - worth a read
Thank you I’m looking for it now.
And do consider becoming a member if you're not already, it's thanks to the charity that resources such as the webite and this forum exist and every pound or dollar is appreciated to keep the lights on
As per tangocharlie comments you can find info and direct link to PMRGCAuk booklet in this link- [along with other info on exercise ]
healthunlocked.com/pmrgcauk...
Thank you
Thanks DL, I need to sit down and get to grips with where to find things. On here and in my home 😆
If in doubt for something like this - have a look in the FAQs. Learning your way around them really is worth it as the info in there is more reliable than random stuff on the internet as it has been checked out.
Thank you , you’re so right about the information here. DL posted a link on exercise that is sensible and spot on. Tuff being 74 going on 16. 🙃
She and I spent a lot of time creating the articles and another former member catalogued them. They aren't perfect, but they are reliable. There are some that should be updated again but it takes time.
I do attempt to update my most commonly referred to ones annually - but as we both know it would be a full time job to do a proper audit
Plus we (you&me) couldn’t update those written by a 3rd party - they would need redrafting and the amendments passed to a moderator.
I think "keeping fit" is one of those interesting comments that we all come out with. I'm pretty certain that if I didn't play sport and in particular rugby at the levels I did I wouldn't be managing the severe OA in most of my joints and the phrase "it's doing no good unless it hurts" is a total load of piffle. I managed to keep pretty active during my PMR and Pred time with walking. Having a dog or dogs is a great incentive and after the first few weeks doing the two doggie walks a day was no problem. I'm also pretty sure that one of them, Meg, was a lot brighter and more intelligent than me.
That was my initial response after diagnoses and prednisone stopping the crazy pain. Trying to stay as fit as possible.
I've been lucky and returned pretty much to normal after about a month, however, I also took things very carefully and made sure I didn't overdo things. Walking was my exercise as well as leading a relatively normal life. I also had no stress from my docs about fast reductions in my Pred.
Agree about staying as fit as possible….but if you aren’t mindful, there’s a fine line between that and overdoing it. Something we comment on regularly.
And there are differing definitions of fit as you get older - however hard it may be to accept.
Very true…
Prednisolone made me feel weird at first. When I got to about 8mg it made me feel great! My rheumatologist gave me very good advice which I followed to the letter. I tapered quickly, exercised as much as I felt comfortable with (quite a lot) and was off prednisolone in 8 months. I am eternally grateful to my rheumatologist, I think he did a wonderful job. I wish you all the best of luck!
Thank you , Yes, I ‘m hoping that I can have a similar experience with my PMR.
The term PMR or PMR syndrome is an umbrella term for a group of similar autoimmune diseases with similar symtoms that respond to treatment with steroids. There does seem to be a short-lived version (a year or so) which mainly men get. BUT the data points to a median duration of about 6 years.
You were very fortunate that your version of PMR conformed to your rheumatologist's preconceived idea of how the disease should behave.
For most of us what we need are rheumatologists who treat the needs of individual patients and don't impose a regime.
Long may you be PMR free.
You are right. I think that my rheumatologist looked at me, listened to me and read my blood results and other tests before deciding how to treat me. We come in different shapes, sizes and genders. Some have underlying health problems and some are more active than others. We are all different. When you say that the median duration of PMR is 6 years, this could mean that many people have PMR for a very short period of time and many other people have PMR for a very long period of time, without anyone actually having PMR for 6 years. Median statistics can be very misleading. Out of interest, could you point me to the source of the data indicating the median of 6 years, I would like to see how the data was collected.
medpagetoday.com/rheumatolo...
a useful source. you can follow up from this link.
Thank you...I have now found something with the detail that I was interested in. I notice that this forum has contributed to the data. It will take some time to digest...
if the mean is 6 then 50% of the population will have PMR for less than 6 years, and 50% for more than six years. The “mode” may be a better figure for estimating PMR duration. It would be the length of time most people have PMR for. But I haven’t seen a figure for that.
Get off Pred ASAP??Dont think so!unless of course you want to have flares.Sorry to say,it takes as long as it takes,this disease decides when it wants to kiss us goodbye,look on Pred as your Colonel ,he is keeping you in check,go against him and he will punish you.Very grateful for my increase in dose at present due to flare,feel half human again!And yes,the muscles do suffer,even cleaning out my parrot cage every morning makes my arms ache.Got to try and get it in your mind G that life has changed for the present,and pushing your body too far is going to cause you problems .Hard if you are a fit,healthy person( ,or was ) ,but trying to continue in the same vein just does not work.!Good luck and be easy on yourself eh!xx😜
Thank you, I guess I’m just anxious to see my GP on the 30th and see what her plan is.
Plans!Dont think half of these Drs or rheumys have a plan!Think it just have to be the case that we follow our bodies and what they are telling us G!After this last flare where I put it down to neck,back,adrenals etc body was telling me different.How stupid of me.From now on be guided how you feel,thatis what I intend to do now.So what if I am on Pred for a long time,past caring now.After losing sight in one eye from GCA Pred is my safeguard,and remember G,PMR can precede GCA( pretty sure you don’t have GCA,sorry,not read your bio!)Just go with the flow,the sooner you accept it and this and then taper sensibly with DLs plan,the sooner you might get off those magic pills,but as I was told recently,just worry about you and getting yourself better,let the pills dictate what you need .Also remember ,too much exercise one day buggers you up for another day,been there,done that and got a whole wardrobe of the tee shirts.Good luck G,time to put that miltary training into practice,discipline yourself!xx😜🫡🫡🫡
Thank you, I’ll probably need a few reminders and flares from time to time to help look over the that focus and adjust the Tunnel Vision with common sense and EXPERIENCE this site so generously offers everyday. Thank you all.
I know it easy for me to say, but the point of our advice is that [if allowed by a sensible doctor] and your own actions there is no need for flares. There are some you cannot anticipate like sudden bereavement of a loved one, a major accident to you, a natural catastrophe etc, but most can be an avoided with a bit of forward planning. 😉
Thank you, and that’s why I’m looking so forward to my appointment with the rheumatologist on the 6 of February. I need to know that someone has a plan moving on from the diagnosis to treatment.
It IS a learning curve,I know so little about it compared to the experts on here,but you will get there ,as I am pretty sure I will eventually.,Baby steps eh.? 😜🫡
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