No sleep and pain getting worse

Diagnosed Dec 15. 30 mg of Prednisone took pain away instantly. Doc reduced the dose by half and I had full flare. Back up to 20 mg but had to stop as swelling from Prednisone caused such major edema that my breathing was affected. Changed to 4mg of Dexamethasone 2 weeks ago. I now wake up at 3:00 am every morning and the pain is coming back in epic proportions. Round the hips and down thighs now being the worst. Lack of sleep and increased pain are dragging down my energy and mood. I feel like a hypochondriac but where else does one turn for help. I am on an anti muscle spasm drug, a diuretic, T3 (tylenol and codeine). Should add that son 43 was diagnosed with ankylosing spondylitis 2 yrs ago. My 72 birthday is 1 week away. If the pain is getting worse, should meds be increased. My ESR went from 50 down to 23 since I started all this, so I don't understand the increased pain.

This is a lonely voice calling out from the depths of the Canadian west. As PMR is essentially a european thing, and I am a brit by birth, there is no support here for PMR and you folks are my only guides with this journey. Thanks for letting me go on a bit.

9 Replies

  • Hi Nossirac

    I am sure lots of knowledgeable people will respond, but just to know you are not alone, thought I would also respond. I am 56 diagnosed in June 15 and still really struggling. Had two flares, I have PRM and GCA and am currently down to 17.5 and have suffered from really swollen ankles in addition to the usual swelling. My bloods do not always reflect my pain levels. Clearly dropping your dose by half was far too drastic. I drop now by 1mg, stay there for a month and then reduce again, but the other guys on here will give you better advice that I can. Factors like stress and additional illness seem also to cause a possible flare, I am still, after 8 months just getting used to listening to my body. BUT I also am having a bad day today and yes it does make one feel like a hypochondriac, when in reality it is a life changing condition. I get extremely down and low but hopeful that things will improve with the coming months.

    Also, insomnia is my constant battle, if I get 4 hours, I consider that pretty good.

    I wish you well and this forum is a course of comfort that we are not alone.

  • The drastic first reduction was obviously too much. PMR is usually treated initially with a lower dose (15 mg being a common amount) and rapid positive response to it is one of the diagnostic confirmations that the pain is caused by PMR. The experts will give you more advice about that, and also how to handle reductions, given that you have edema. Do you know if you have any other health condition that is contributing to that? As for the lack of support in Canada, this lonely voice from the East coast hears ya! Not sure what we can do about it as logically the Arthritis Society should be providing a supportive forum. But lack of funding seems to have meant the forum I tried accessing on their website was stillborn.

  • I think there is now a support forum for Canadians though how active it is yet I'm not sure. Where in the west are you?

    If you go to this UK forum:

    and put up a post you may get contacts since I know at least one person is on the west coast and I think there are some others. There are a few further east - Heron is one - and I know of at least one lady in the frozen north! There is also a US lady in the Portland area.

    PMR isn't really just a European thing - some of the biggest studies were done in Olmsted County in Minnesota.

    If you have just PMR then you should be on a dose of not more than 15-20mg to start with to get the inflammation and the pain and stiffness under control and then you reduce slowly to find the lowest dose that manages the symptoms as well. Maybe if you tried that level you would have less breathing problems. At that dose though you need to hang on for a few weeks - the drop of 50% was far too much and it could also have been steroid withdrawal that caused the pain. Not everyone has the instant response at 15mg, it will take longer than 30mg to get the same sort of result but it is also associated with far fewer side effects. It may also help the side effects if you split the dose into 2 smaller doses.

    I'm a bit confused by what is happening to you though - 4mg dexamethasone is equivalent to about 25mg pred but the effect should be lasting far longer than 20 hours, it is usually expected to be 24-36 hours. However, everyone is a bit different and maybe you are just a person for whom it doesn't last so long. You could try splitting the dose, taking perhaps 3/4 in the morning to get you through the day and then the rest before bed to take you through the night, or half an half. Many doctors are scared of splitting the dose for all sorts of reasons - but if a single daily dose isn't working then there isn't a lot of point refusing to do so and US doctors quite often suggest splitting the dose. Your biggest problem with being on dexamethasone is going to be trying to reduce to a lower dose - not that that is a consideration at all until the pain is under control.

    I'm far from convinced a drug for muscle spasm is of a lot of use - it isn't muscle spasm in PMR, it is inflammation and swelling that cause the pain which is why pred is used. It is also possible that the hip and thigh pain stem from a low back problem, maybe piriformis syndrome or myofascial pain syndrome, both of which are often found alongside PMR. Another possibility is that the hip/thigh pain is bursitis. All these respond well to local steroid injections (which gets a higher concentration of the drug to the area where it is needed) and/or physical therapy either from a physio/sports massage therapist who can do manual mobilisation of the problem areas in the muscles. Some people find that a technique called Bowen therapy also helps relieve this sort of pain. Any technique that removes some of the pain will allow the corticosteroid to have a better effect on the remaining PMR problems.

    But if your son has been dx'd with ankylosing spondylitis - are they sure it is PMR you have?

  • Canadian support group also apparently stillborn. I signed up at the beginning and have never seen a notification from it. Don't even remember how to find it now! The US one also seems inactive. All the Canadians I've been aware of, with the exception of one Newfoundlander, have been in Ontario and West of there.

    Regarding your sleep, Nosslrac - this *may* be helpful, but possibly not until your pain is under control - since I started taking one third of my daily calcium at bedtime I've been sleeping very soundly, despite having been a lifelong intermittent insomniac. Yesterday I drank two mugs of coffee at suppertime and yet I slept through the night, waking up just ten minutes before the alarm was set!

  • A Canadian discussions was set up a few months ago at

    Someone had said that their son would be developing a super one at some stage. I am not sure how many people know about this one, it was done for free, so does not have an easy domain name, although one could be purchased. It has been updated recently I notice.

  • Ah, that is the one that was set up for us. I posted a comment to make contact and never heard another thing. Thought notifications would show up in email. It was actually created by someone who used to post frequently on these forums but appears to have left. I just attempted to reply to the new post and it appears I have to register again, don't know why if my initial post was successful. Don't see how to log in. Too bad as the new post is from someone in my neck of the woods.

  • It is not that sophisticated, as you do not even have to register, which does make it easy to use, so it does not keep email addresses. You just need to visit every so often.

  • It looked like you had to supply masses of info just to reply, which was a bit offputting. After I signed up originally I really had no idea how to find the site again and waited expectantly (until I forgot all about it) for notifications.

  • Hi Nosslrac

    I came across this info on here whilst scrolling through the forum, which might be of some help to you as well as the help available on here. It was posted on here by Canadian PMR and GCA discussions and is a web address to a forum more local to you:

    Hope it is of some use to you

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