GPdiagnosed PMR after raised CRP And ESR blood results and discussion with rheumatology and now have an appointment with rheumatology next week. The steroids have helped slightly but still in a lot of pain in my neck but I am struggling with intense fatigue. I was walking 8 miles every second day and now I can not even get in the shower without having to rest, does the fatigue improve? Thank you for any information as I had not heard of polymyalgia rheumatica prior to this.
FortunatelyI have not had to deal much with fatigue. My main problem is the pain and stiffness.
Maybe after you get your prednisone at a good level the fatigue wil get better.
We'll see how Eileen response to this she is one of our resident experts on PMR but it is my understanding that prednisone really just treats the pain and inflammation. The fatigue unfortunately is one of those things that we all just have to learn to live with.
Hi I never had fatigue when I started on the prednisone 15mg. but did have a hard time at night sleeping more than a couple of hours because of the terrible pain especially both shoulders where very bad. Once the prednisone started to work the nights got much better now down to 7mg I take 5mg in the day time and 2 before bed which is helping with the morning stiffness which at this point is only in my hands I never thought of doing it that way but did read where some in this forum take twice a day so thought I would give it a try working great been only three days Much improvement .
My fatigue has actually gotten better. I am 7 months in and might rest just 20 minutes to 45 minutes in the afternoon now compared to 2 hours or more every afternoon in the beginning.
My ESR and CRP were off the charts when diagnosed and are close to normal now. I don't know if thst is why I have less fatigue now.
I am back to working some full days again and like to exercise 6 days a week. In the beginning I didn't think I would ever be able to do either of these things again.
It is mind blowing in the beginning but it does get better.
People in this forum are very helpful.
I'll be really interested in this thread..when I first went on the Prednisone, the pain, stiffness AND fatigue improved a lot...70% at least. I learned to pace early on, when Eileen set me straight about the importance of pacing..I was even able to cook and serve Thanksgiving dinner for 8 people, I remember, and was only a bit tired after the event.
Now, 6 months into Prednisone treatment, I feel extreme fatigue,even more than pre DX of PMR. I also feel malaise, as if have the flu.The ruematologist has put me on methrotexate so my symptoms could be side effects but im pretty sure I was already feeling fatigue and malaise before the first shot of mtx.
Anyway, all I can tell you , Olliemacey, is that PMR is one complicated condition...not even most rheumatoligists know much about how to manage it..there is no consensus ...many different approaches and protocols, etc..it's a condition whose mean age of onset is in the 7O's and rheumies would rather focus their time and energy on diseases with a younger onset.
Im sure you'll get satisfying replies from the experts on here. This site has been a life- saver for me..It's so easy to get depressed with this disease, it's such a life -changer..this forum really helps to make me feel understood.
Welcome to the journey..
Wow Barbara, you and I started about the same time but you are way ahead of me.I hope you are much younger than me! Congrats!
It hasn't gone well for me. I started on 30 mg of pred and flared terribly at 17.5, back up to 30, same problem at 17.5 again, then up to 40 and added methotrexate.
I took 7 doses of methotrexate then rheumatologist said it wasn't helping. I had the worst fatigue when taking methotrexate. On the couch for 3 days every time.
Still having a hard time tapering the prednisone. My doctor wants to start Actemra IF my insurance company will allow it. We are looking into that now.
I am trying the Dead Slow taper now at 18 mg. I think I am very sensitive to pred withdrawal.
I was shocked that my ESR and CRP were close to normal last week. The only thing that has changed is I had my thyroid removed about a month ago due to goiters.
Everything seems to have calmed since that surgery. All my doctors say there is no connection between thyroid and PMR. Guess it's a coincidence.
I am 55. If I learn nothing else from this experience, I hope to be a more patient person. Rushing around just doesn't work with PMR. In the beginning, I cried at some point almost every day out of frustration.
I very much appreciate being in touch with others who have this. Those who don't have no idea what we are dealing with.
Thank you all for your replies. I am finding the pain difficult but seem to be able accept being sore and stiff but the fatigue is just causing me the frustration and because I feel so unwell I have turned into a tearful wreck. I am only 50 and can not believe how quickly I have gone from working, looking after the family, house and hobbies to not being able to get off the sofa, only on prednisone 15mg and doctor said it may have to be increased but listening to others here it may be a slower road to recovery than I was expecting. Thank you to everyone for taking the time to explain how PMR has effected their life.
For me, the worst of the fatigue seemed to set in when I was at too low of a pred dosage, and where painful shoulders and hips were still present.
So I would advise taking reductions in very small steps, with the expectation that your pred dose requirement is prone to fluctuate (for me that has tended to be seasonal).
Hi I'm 53 and was diagnosed about 4 weeks ago. I didn't recover as fast as I was supposed to in fact 3 weeks of 15 mg pred before vaguely normal and yes the tiredness because of disturbed sleep. The doctor has now put me on 20mg and starting to feel much better. I'm now sleeping 4-5 hours which is an improvement but have foggy brain some of the time. I'm just having to accept this is me for the time being. I'm back to work but currently can't walk my dog in the mornings but hope to start next week. The whole thing has been an awful shock. I guess the lesson I'm learning is patience.
The fatigue is common with almost all autoimmune diseases and the medication rarely makes much difference unless it is something that directly affects the disease process. Pred is the only known medication that manages any of the PMR symptoms by reducing the inflammation and so the swelling that causes the pain and stiffness are improved. The actual disease process continues in the background, attacking body cells as a new dose of the inflammatory substances is shed in the body every early morning. It can only really be managed by learning to pace yourself.
This link is to the post we have with our "reading list"
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and right at the bottom is this one:
which gives links to a couple of articles which are very helpful.
It probably will improve in time - your body is still needing to heal from the untreated period and once the inflammation has gone your should start to feel better. A common error is to think the pred has "cured" you (even some doctors think that) - no, it is managing the symptoms, that is all. Some people feel very well on the higher doses of pred as that is a side effect and then they do too much on a "good" day and that is inevitably followed by a "bad" one. You can start to do more of anything but you have to build up slowly, not rush in and do half an hour in the gym for example or walking a long way at the start. Start with 5 or 10 minutes, see how you are the next day, and then add a minute or two (no more) evey second day - resting and assessing on the day in between. It sounds slow - but like the dead slow approach to reducing the pred dose, it isn't slow when it works.
And I'm sorry - but yes, it WILL be a slow road to recovery. About a quarter of people with PMR manage to get off pred in 2 years or less. A further half take up to 4 to 6 years and the rest of us even longer. And the autoimmune disorder just burns out and goes into remission, the potential is there for it to wake up again and you have a second episode, it does happen although it isn't very common. And unfortunately there is no way you can tell at the outset which of those groups you will belong to. Nor is it possible to predict how you will manage reduction of the pred dose - a lot of people find it difficult to manage the sort of reductions many doctors suggest. Small steps and slowly and carefully does work best for most people.
You can't force PMR - you can't fight it and there isn't anything you can do to speed up the process of it burning out. Cutting carbs, especially sugar and other simple carbs, often helps reduce the inflammation a bit and also to avoid the weight gain that many people experience with pred.
Google "The gorilla in the house by batsgirl and you will find an allegory about living with chronic illness - and honestly, it is the way to live well with PMR: accommodate it and work round it. But don't try fightling it - you can use the energy far better.
If they were raised, once your ESR and CRP are in normal range that suggests the inflammation is pretty much non-existent for most of the time and less damage is being done to the muscles so they can heal. That is why it is a good idea to stay at the starting dose until the markers are as low as possible - and it happens quicker at higher doses.
It is a different matter for those of us who have no raised markers, then you have to learn a lot about YOUR body and YOUR PMR. I manage my fatigue by reducing the physical things I do to a minimum but I have never felt I needed a rest during the day which is something that helps a lot of people. I do get tired - but it is far more a sense of apathy and then, all of a sudden. I hit a brick wall of fatigue. It is always when I have been doing too much. At first it could happen 2/3 of the way down a short ski run when I had known I SHOULD stop and go home but felt good and risked "one last run". Now it doesn't come until after several days of doing more than I should!
"All my doctors say there is no connection between thyroid and PMR."
Another quote to add to the growing pile of "what are they thinking?" things that doctors have been reported to have said this week!
One of the rule-outs in making a diagnosis of PMR is THYROID problems! PMR is just the name given to the set of symptoms with which we are all so familiar. They are not the disease itself but the outward expression of some underlying problem - and there are a whole load. One is poor thyroid function. All these other things should be ruled out before it is decided that what you have is "just" the PMR we talk about here. The NHS info page on PMR says:
"Blood tests can also help determine:
- whether there's an infection in your blood
- how well some of your organs, such as your kidneys, are working
- whether you have an overactive thyroid gland or an underactive thyroid gland – both conditions can cause muscle pain"
In my case my thyroid fiction always tested normal with that common testing of tsh. They never did a full panel to test the other t's and since I had to have it out anyway because the goiters were pushing on my windpipe, I didn't push for that. But I always wondered if my thyroid was really working well enough. I'm glad it's gone.
Haha - sounds like a Freudian slip - thyroid fiction! The average GP and other non-thyroid specialists do the TSH (thyroid stimulating hormone) and if it is in "normal range" insist all is well. That isn't always so - for example, if the thyroid has increased in volume it may be producing "enough" to suppress the TSH - but it isn't healthy.
"If they were raised, once your ESR and CRP are in normal range that suggests the inflammation is pretty much non-existent for most of the time and less damage is being done to the muscles so they can heal.".
Does that mean that if the markers stay raised or go up, as in my case , there is another underlying cause - another autoimmune disease that's popped up or the pred playing havock on thyroid function,etc?
I have lots of symptoms of hypothyroidism- fatigue, suddenly raised diastolic bp , feeling cold, no hair on arms or armpits, IBS symptoms...In the public health system here in Spain, they only test TSH and only if that is abnormal, they test H4 and so on..if you pass the first two, they won't test any further.Insane and so outdated!
Maybe my new rheumi, who seems like he thinks outside the little box , will order more specific tests. It IS possible to develope Hashimoto's after PMR, right? And it's an autoimmune condition that doesn't respond to pred or mtx. Im a mess, Eileen, I know!
Yes - it isn't common but it happens. Markers going up despite no symptoms also happens - but doctors always act baffled and "can't think why".
I think the TSH test-only is fairly common outside Spain too - they just have this concept if it is right, all must be right.
All those things can happen with PMR/pred - I quite like the not needing to shave bit! I had been cold for a while and had various hypothyroid-like things going on but here too they can't find anything - though they did do antibodies last year. I'm rather happier than you though Mimi!
I do hope your new rheumy is helpful.
That's good to know, that all these symptoms I have lately could be due to pred and PMR..will try to find my old Pollyanna attitude that I lost a few months ago and come to terms with my PMR !
It just seems obvious that they should be doing more than TSH ..I haven't seen my endocrinologist for the pituitary apoplexy since before the PMR dx., They haven't even done a TSH since then...I should get the antibody tests as well.
That sounds a perfectly reasonable expectation - follow it up!!!!