I am confused. What is being inflamed? The joints or the ligaments. I understood it was a disease of the ligaments and tendons and not so much the joints or muscles.
I am affected in the hips, neck and shoulder. It is not my muscles. The stiffness and pain seem to be more in the ligaments.
Has anyone come up with a remedy for the awful morning stiffness and pain? I have tried stretching and heat but just doesn't help very much. The only thing that seems to help is time. After about an hour it all lifts enough so I can get moving and start my day. Thanks
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Lin
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Linny3
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In PMR? Neither really - the now generally accepted view is that PMR, like GCA to which it is linked, is a vasculitis, inflamed blood vessels. In GCA it is larger arteries, in PMR it isn't entirely clear but probably the very small ones supplying the muscles. The impaired blood flow affects the muscles' ability to function properly.
The only way of sorting the early morning stiffness is to take the pred before it starts. A study found that the optimum time to take pred to reduce the early morning stiffness is 2am - which results in the peak blood level happening about 4am or soon after before the inflammatory substances are shed in the body and can take effect. On the basis of this research, a German company developed a delayed release form of pred which is taken at 10pm and releases all at one time at 2am - achieving a state of no morning stiffness.
Some people wake early and take their pred with a glass of milk or a snack and settle down for another couple of hours, by which time the pred is working. The earlier you take the pred, the less inflammation has been caused so the less it has to do. Another approach is to take your pred before bed or to split the dose since early morning stiffness happens because the antiinflammatory effect of pred is lasting less than 24 hours - it varies between 12-36 hours depending on the person. In some people the stiffness and pain returns by evening - and they find splitting the dose works well. Normally taking about 2/3 in the morning and the rest later in the day makes a big difference - the earlier it is taken the less efect it is likely have on sleep but some people can take it all at night and sleep perfectly well. The second dose is best taken about 2-3 hours before you would expect the pain and stiffness to return.
Having a bit of tough few days, forgot to take my Pred on Tuesday & didn’t discover it until Wednesday Morning, it’s something that a few of us have done in our time!
We have a new house & a new Grandaughter so things are very much not the norm at the moment, very exciting times! But I’m taking it steady, which is what you’ll learn from your own experience & from us who’ve been there, done that & got the TShirt!
Please ask any questions you may have, there will always be someone who knows the answer or can find out.
I have had GCA/PMR for 2 years. One thing I found is this disease is not predictable. You are feeling better and then you feel awful. An invaluable lesson I learned from this website is to pace yourself. For me, if I do one activity the day before, the next day is a rest day. An activity is one thing I did... went to beach, had lunch with a friend,... I can no longer multitask because stress and anxiety will cause me to flare. I try to keep my stress low and keep a low level of activity. My body does a lot better this way. It is a huge change in lifestyle. I was a teacher and avid swimmer. There was a grief process I went through. Now I do jewelry on the couch on bad days and read. I try to get out in nature on good days, as this is what feeds my soul. Be gentle to yourself with all the changes in your body. I wish you luck on your journey whatever that looks like for you.
I think everything you have said is true and I do still believe I can do it all. It's so sunny here in London ( has been for the last few weeks) so on Monday I changed all the beds and did so much house work and ironing I am sure that's what has affected me this week.
Although to be honest I went to London zoo nights on Friday night after working all day and walked around the zoo until after 9pm!! I didn't wake up until 11 on Saturday and was shattered then. I think that is when it all started to be honest!! I think I am the same person I was and can do everything but I can't. That is the hardest thing for me to admit.
It is a horrible realisation that you are not the person you once were. 2.5 years into this battle, also started at 56, I am still struggling with this. Sounds daft but when there’s so much you want or need to do you just do it, especially when it’s a good day. Friends still ask if I’m getting any better or am I off the steroids yet and I think some glaze over as it seems to have been going on so long.......and “I look so well” and oh you used to be so fit and healthy, how did you “get” this!!! Developing resilience is half the battle and I really struggle with this. Good luck in the club and you’ll come to rely a lot on the words of wisdom here.
I have had PMR for over 2 years and have realised that pred only lasts 18 - 20 hours for me. Therefore, as PMRpro says, I split my dose to get the optimum relief. It has been a question of trial and error to achieve the best effect for me.
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Is it PMR or something else?
Is it a flare or not?
Do I have PMR or not: that is the question?
Prednisone or prolia?
Flare or not
