I have had PMR for over a year. Started at 20mg Pred. down to 3mg at this point. I wake up feeling winded and like I has punched in the stomach. Before PMR had good energy and was athletic. Does the fatigued feeling minimize in time or do I need to build my strength little by little. My girlfriend feels I am slacking and cant understand my lack of energy.
HI. Will be one year fior me in jun .start at 20 mil now on 2 mil. I am doing one shot a week of acterma. I am still stiff most morning. Till I get going. A drag my self to the gym
At least 3 days a week. I use to go 5 days. I work on my feet running around all day 8 hrs. At night I get very tired. I use to be able to go all day and night !!! I hope this burns it’s self out. I am only 54 years. And was in great shape. I wonder how long this will take. Been to 5 doctors. I live in ft lauderdale they don’t seem to know much about this. I learn more on this site then the docs !!! Mj
PMR does reduce energy and makes you weaker. On the other hand, you can improve the overall stamina by CAREFULLY exercising pretty much any sport that you like ( or multi sport is even better). Just take it slow. Another point that I want to mention is that you have reduced pred very quickly in one year and maybe you are below the dose you need, which may be causing morning problems. You can "test" if you are at too low dose by bumping it up to 5mg for day or two and see if symptoms improve. You can go immediately back to 3mg after, no need to tapper. If you find that it helps, maybe your maintenance dose is just a bit higher then what you are on now, like 3.5 or 4.0.
To have got from 20 to 3mg in a year is excellent - PMR lasts from 2 to 6 years for three-quarters of us, a few even longer. Men usually tend to do better.
I find the punched in the stomach sensation is accompanied by a hot glow - and is an infallible sign my pred dose is slightly too low. You aren't aiming for zero pred, you are looking for the lowest dose that gives the same result as the starting dose did - and increase in the PMR symptoms is a sign you have gone too far.
Also at this stage your body, specifically your adrenal glands, has to start to produce its own corticosteroid called cortisol again. While you were at higher doses your body produced no more - like the central heating boiler switches off when the wood burner is heating the room with the thermostat. The whole feedback system takes time to settle down - and in the meantime your adrenal function is rather variable and one sign is fatigue. If that is getting wrose as you reduce the pred beow bout 5mg it is a sign to stop reducing and wait a few months to let the adrenal function sort itself out.
As long as the actual cause of the PMR is active - an underlying autoimmune disorder that makes your immune system attack the body as "foreign" - your muscles remain affected and intolerant of acute exercise. You CAN exercise but you have to get in training again - starting from a very low level and building up VERY slowly. By very slowly for most people I mean starting with perhaps 10 mins walk one day and then resting the next. If it was OK and you didn't develop DOMS (delayed onset muscle soreness) you can add a couple of minutes to the walk. Maybe you can already do that much, and more - but you must start at the level that DOESN'T leave you sore and exhausted next day and build on that and in very small increments because as you have already found, once the fatigue hits it is overwhelming. No-one who has not had an autoimmune disorder can understand it - it doesn't get better with a rest and can last for days if you really have overdone things. In some cases it can trigger either PMR developing in the first place and very often a flare.
It is absolutely typical of autoimmune disease and probably the biggest problem most people meet as they are in a good phase. In a bad phase you can feel you just want to die in a corner. Your girlfriend might understand what one of my friends said "I'll be in Next looking for something new and all I want to do is lie on the floor under a clothes carousel and sleep."
At present you have a double whammy - the PMR and the adrenal function. Nothing will help either - just time - so don't waste money on supplements and fancy ineffective so-called "treatments".
This is a very good article about autoimmune fatigue - whether it is Sjogren's, PMR, rheumatoid arthritis, the fatigue is the same and due to the systemic part of the disease which makes you feel as if you have flu on a permanent basis.
http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-types-of-sjogren-s-fatigue
and another that explains the autoimmune fatigue effect and managing chronic disorders is this
https://rarainbow.wordpress.com/2013/06/12/the-spoon-theory-and-the-gorilla-in-your-house/
Most informative, thank you, Eileen. I am at the 5 1/2 mg stopping point, using the dsns method (got pmr sept. 2016) and was doing well using split dose. Able to walk 5000 steps a day in short spurts, light housework, much improvement in a.m. soreness and stiffness. However, this past week I've had early evening bone crushing fatigue--you know the kind...too tired to brush teeth, pull back the blankets to get into bed, etc. it came out of nowhere, as I was doing so well.
i understand that it is my cortisol levels not catching up, that it's part of the disease, etc. but here is my question: do I stay at 5 1/2 mg and ride it out until I feel better or do I go back up to 6 mg? And if it is the latter, how long should I stay? I am hoping I can ride it out...
today i I have decided not to walk (that will kill my very determined ego); I am going to force my body to rest--or maybe I will walk but only a very short distance. Thank you in advance for your very patient responses--and everyone else's. I would be lost without this forum.
Most informative, thank you, Eileen. I am at the 5 1/2 mg stopping point, using the dsns method (got pmr sept. 2016) and was doing well using split dose. Able to walk 5000 steps a day in short spurts, light housework, much improvement in a.m. soreness and stiffness. However, this past week I've had early evening bone crushing fatigue--you know the kind...too tired to brush teeth, pull back the blankets to get into bed, etc. it came out of nowhere, as I was doing so well.
i understand that it is my cortisol levels not catching up, that it's part of the disease, etc. but here is my question: do I stay at 5 1/2 mg and ride it out until I feel better or do I go back up to 6 mg? And if it is the latter, how long should I stay? I am hoping I can ride it out...
today i I have decided not to walk (that will kill my very determined ego); I am going to force my body to rest--or maybe I will walk but only a very short distance. Thank you in advance for your very patient responses--and everyone else's. I would be lost without this forum.
I know what you mean. it is only within the last few months that I've felt okay just taking a day off and not going for the walk, or maybe jsut going for a short one. I wear my pedometer every day, and it bothers me not to achieve 10,000 steps. But on the other hand, I do manage far more often than not, and because I've been so good for so long I think it doesn't hurt to have a day off, so to speak. The key thing is not to let that day off turn into a week off, and to lose one's level of fitness, achieved with such care. Personally I don't think it's a good idea to increase pred in the face of fatigue (not unless adrenal function really is proven medically to be dangerously impaired). How will our adrenals ever get back on track if we keep letting them off the hook, so to speak. Sorry about mixed metaphors.
If it improves a bit, albeit slowly, then stay where you are as that is more of a prod to the adrenals to function. But if it doesn't and you can't function then you may have to go back - or alternate 6 and 5mg maybe? And if it doesn't improve - definitely worth asking the GP about the possibility of a synacthen test (ACTH stimulation test) to see if your adrenals are CAPABLE of making cortisol. It doesn't mean they ARE doing so, but if they aren't going be able to do so anyway it is useful to know so you don't keep banging your head against the proverbial brick wall1
Thank you...I'll wait awhile to see whether the fatigue abates, and will stay on 5 1/2 for as long as it takes. I thought that by doing the dsns that I wouldn't have fatigue, but once again, pmr triumphs! If the fatigue persists, I'll do the 5 1/2-6 mg waffle plan to get things back to where they were.
i am loathe to have the acth stimulation test because I am so very hypersensitive to medications--am afraid I'd be one of the ones with the side effects from the injection.
thank you, most appreciated.
It is maddening not to be able to do what I want. As I told Eileen, I'll power through the fatigue for awhile (and take a day off as you advised) to see if it abates. I've been walking just short of a mile in the afternoon; I'll cut back on that for now--go in shorter spurts. A doctor once told me, "you can't exercise with determination when you have chronic pain." (This was pre-pmr, but definitely undiagnosed early onset). I've always been determined to power through, no matter what. It kills me to be fatigued. Thank you for your always kind and thoughtful comments.
I did myself in yesterday evening by shifting, very carefully, rather too much heavy snow out of my driveway. When I got up this morning I could hardly move I had to walk this morning because despite yesterday's efforts I still couldn't get the car out, so have done approximately half my daily goal which makes me happy, but will be moving a bit slowly the rest of the day. 🐌
Hi Twopies,
I was having the same problem on my most recent taper from 2.5 to 2.0. For me, the symptoms just kept getting worse with each passing week until in the end not only was the fatigue worse, but I developed depression. I would strongly advise not to stay too long on a dose that does not work for you. I tried to stick it out on the lower dose for 5 weeks. That was much too long. I had never experienced depression before, but having gone so long on the wrong dose, I became numb inside. For me, that was much worse than the fatigue. Once I went back up to 2.5 the clouds lifted and I felt alive again. I read some research linking depression to the auto-immune/inflamatory response which can cause chemical changes in the brain.
Bottom line, if the dose doesn't work after 2-3 weeks, go back to last dose. Don't let your symptoms spiral downward for too long!
Really good advice! Yes, sometimes I blubber my brains out for no reason. I read in the beginning of this journey that depression was a possibility but I had read it was due to the pred. No matter, it’s not good either way.
How long did you stay at 2.5? Or if you are still on it, how long do you plan to stay on it before going back down to 2?
Hi Mjhollywood,
I know exactly how you feel. I'm 56 and was diagnosed at 55. I am at 2.5 down from 20 mg 14 months ago. I have learned from this forum that there are many people out there who do not have their symptoms resolve and reach 0 steroids in 12 months time. Myself included. Unfortunately, the doctors often set that up as the expected "textbook" course of recovery. You and I are both in the early onset category. And while it is hard to go from being so active to being limited at only 55, my rheumatologist pointed out that of all the diseases he treats in his specialty, PMR causes the least damage and responds to treatment the most. So, don't spare the treatment. I learned that the hard way when I stayed too long on a lower dose that wasn't working.
Just a few weeks after the onset of my PMR I was in "your neck of the woods." I broke down crying on the Hollywood Beach Broadwalk when 85 year olds were passing me on their morning walks as I (only 55), shuffled along taking short baby strides because I didn't have full range of motion in my legs due to stiffness. One year later, I returned and could actually keep up with (some of) the 85 year olds! Just know that I may take time and you can't rush it. Maybe the gym is too strenuous if you are already on your feet all day for work. I know I could not do that. This is not a time for "getting in shape", but a time for nurturing your body with moderate exercise and things that make you feel good. You are lucky to live is such a beautiful area by the ocean. For me, just being able to walk on that boardwalk by the ocean last month (and keeping pace with the octogenarians) was just the right antidote for body and soul. Be patient and good to yourself.
Best of luck.
I was only on 2.5 for 2 weeks and then my doctor had me reduce to 2.0.
I was feeling good on 2.5 but as soon as I went down to 2.0 I felt bad, and went from bad to worse. Stayed on 2.0 for 5 weeks.
Then back to 2.5 for 1 week.
Tried reducing again for two days but could tell immediately it was effecting my emotional well-being as well as physical.
So now I have been back on 2.5 for 11 days and am doing so much better. The difference is like night and day. My doctor wants me to stay on 2.5 for another 2 weeks and try a reduction after that.
I am thinking I would like to try 2.25 since I have had a couple of failed attempts with 2.0 That would require getting the .25 in liquid form. My doctor was not in favor of this only because I would be using both pills and liquid (two 1mg pills plus .25 ml). I don't see why that is a problem. Wondering if anyone else has tried that?
Woodrow,
I have found that sometimes I just need to take a day of rest to get my strength back. There is always the underlying fatigue, but as you probably know, there are gradations. Hopefully, the overwhelming fatigue that you probably experience when you were first diagnosed has been lessened by the prednisone. You probably are not deconditioned. For example, I can still walk several flights of stairs without getting winded even though my muscles do not like it much. If the fatigue is so bad that it is stopping you from doing things, you probably need a higher dose. If it feels like there are wearing ankle weights and arm weights, and you have given the current dose a reasonable try (2 weeks), then go up a little in your dose. Even 1/2 mg can make a huge difference!
Good luck!
The dead slow method was developed to help us get through reductions at the lower levels. On the other hand, if you were to try the dead slow method and it still didn't work, I'd say you'd reached the level your body needs in order to control the inflammation. I use the dead slow method and if at the end of a taper I don't feel as well as or better than I did at the beginning I know I'm not ready for the lower dose. And it's pretty standard that at the lower doses you need at least a month at a dose before you know if the reduction is working. My doctor made the mistake of suggesting somewhat faster reduction when I was at 1.5, and my equal mistake trying to do what she said resulted in a flare which has set me back by about a year. From now on it's dead slow nearly stop all the way, with an emphasis on stop!
Beautifully put! ❤
No - depressive mood can be an integral part of PMR/GCA and is listed as as a symptom. It may be the inflammation and there is a link to chronic inflammation. But it may be just so. It is certainly there without pred too.
So actually you had reduced by 1mg - or 33% - in a few weeks. Your doctor is a clown - you need AT LEAST a month at each new dose - and the lower you go, the longer you need. For comfort, no reduction should be more than 10% of the current dose. Not only to allow your body to get used to the new dose before moving the goal posts again but also to cajole your adrenal glands to stage a slow return to duties.And there is no reason at all to worry about mixing liquid and tablet forms - except that liquid format costs about 30 times what tablets do (in the UK at least).
If your body has revolted twice already at the same dose it is telling you quite clearly it is not yet ready to go lower. Your GP is putting you at risk of a flare - and having to go back considerably higher. Why's he in such a hurry? You are at a low low dose, well below the physiological dose, the amount of corticosteroid your body produces in the form of cortisol anyway. All that happens is that your body tops it up to the level it needs, And the evidence is that there are no serious problems long term at PMR-type doses:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
is an article about work from a top PMR expert at the Mayo Clinic, Eric Matteson.