I searched the archives and cannot find much about this. My hips hurt so much at night that I am awake for hours. I understand this is one of the primary symptoms of PMR, which I was diagnosed with 18 most ago. I had hip scans, and doc says the hip structure is fine. I've been tapering from 20 mg prednisone to 6 for 18 months, but even at higher levels the prednisone has not made much of a difference. I take Tylenol sometimes but don't want to take too much. I'd love to hear what others have done to deal with hip pain. Thanks.
Hip pain: I searched the archives and cannot find... - PMRGCAuk
Hip pain
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Gigi1946
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The only hip pain I had was part of PMR and went with pred and then since then I have had trochanteric bursitis which causes outer hip area pain and if the iliopsoas bursa is affected it can be deep in the groin.
Where exactly is the pain?
the pain is in the side where leg ang hip meet. Not correct medical description, but significant pain there going down side of leg. I don’t notice it much during the day, but nights are difficult.
Bursitis causes that sort of pain - is it sore to lie on?
If it's bursitis, and it sounds a bit like what I had off and on for many years until I figured out that's what it was, there are exercises online. I only did one, called the Clamshell, but there are others here:
Does the Tylenol or any other painkiller help the hip pain?
No. Only thing that helps is Vicodin, which I rarely take. I don’t want to get hooked on that!
Hi. I sympathise entirely. 12 months ago was diagnosed with pmr. At the time I had a hip xray. Doctors said my hips would outlast me and were fine. Took steroids helped a lot. However when down to 5mg I had two things happen. A searing pain in right hip when I stood up and then a flare. 2 months later I asked doctor if I could increase steroids as in so much pain. Flare went away. Hip pain didn't. Eventually went to urgent treatment centre as I could barely walk. New xray. Osteoarthritis in right hip and starting in left hip. That's what steroids can do to you. Go get another xray. I think the flare happened because of the pain. Now trying to get some treatment to sort but my experience might me of use to you. Hope you get sorted soon
Gigi1946 in reply to
Thanks for your reply, Grace. My inflammatory markers have finally gone down to normal, so doc says PMR is in remission. But the hip, leg and shoulder pain has not gone away. It is so frustrating. I will get another xray. Maybe something has changed. Best to you.
Sounds very familiar - my pain actually started in the hip but it was diagnosed as bursitis and I was referred to x-ray. A couple of months later the symptons of PMR started, and that was diagnosed in November last year. However the steroids never helped the hip pain and as PMR kicked in I obviously had to stop the physio. The only thing that helped was co-codamol or tramadol, both opioids.
In January when I saw the rheumatologist he referred me for a hydrocortisone injection. Due to other complications that didn't happen at the time (I ended up on a cancer pathway for something else, benign luckily) and finally had the injection last Friday. It is at last beginning to ease, but it'll be interesting to see how long it lasts.
I had the same pain in both hips when I tapered my Pred down from 3mg per day to 2mg per day a couple of years ago. After two solid months of agony each night I gave up and went back up to 4mg per day. The pain then went away completely.
The thing is that while I was suffering, I found that the only way I could get any sleep at all was to get up, go downstairs, sit in my laid back arm chair, put my feet up on a pouffe, and cover them with a blanket. In this position I was able to get some much needed shut eye, but it wasn't the deep sleep we all need each night. So in the end I gave up and increased my Pred.
I'm currently on 2.5mg per day, and since dropping to that from 3mg I'm finding that I'm getting the hip pain again, but not as severe as before. I find that sleeping in the recovery position is best because it means that I'm not putting all my weight onto my hip, but instead I'm spreading the weight out over my whole lower leg. This seems to be working (to a degree) but I still hurt in the mornings and have to have my Pred as soon as I get up, then go and sit in the arm chair for an hour or so, till it's started to take effect.
Best of luck with it, and I hope you find some relief from the pain, it really is unbearable, and I'm not at all surprised you're desperate to find a way out of it.
If it is that bad - look up trochanteric bursitis stretches and try them and if they don't help ask about a steroid injection. I found that was far more effective. I also had extracorporeal shockwave therapy which also works well but takes a lot longer, a few sessions a few weeks apart. It's like lithotripsy adapted for soft tissues and works well if you can get it.
Thank you for your advice PMRPro, I have tried various stretches in the past, but didn't find they had much effect. If it gets any worse then I'll try to contact my GP about it (which is a major rigmarole in itself!). The problem is that our surgery was recently taken over by a group of surgeries, who have implemented a system of triage. This means that in order to even contact a GP one must fill out an online form at 7.30am and submit it, stating the problem you're having, and hope that one of the GP's will act on it. I did that once and have heard nothing since, so I've no idea whether the issue I was contacting them about was ever even seen, let alone dealt with.
I can only assume that it wasn't because it was about a prescription of mine, that hasn't been updated as required by my rheumy, and nothing's been done about it yet. That was a fortnight ago, so I'm going to visit them today and ask about it. I'll keep you informed as to the outcome!
Everything may change in October though, when I next see the rheumy again, as she's keen to get me off Pred altogether. I'll tell her of the problems I've been having with reducing, and see if she has any bright ideas about how to overcome them if I'm to be Pred less.
As it is, since dropping from 3mg to 2.5mg, I not only get the hip pain again, but now I'm having problems with my left hand. I'm left handed, so it's important that it works without pain, but I'm finding that I have virtually no grip strength, and any side loading, such as lifting a mug of coffee, will cause a lot of pain in the tendons of my index finger and thumb. I've read on here of others suffering hand pain when they get to a low dose of Pred, so I know I'm not alone on that one. The problem is how to deal with it now that we can't get to see our GP's anymore for advice?
"she's keen to get me off Pred altogether."
Then she is being a bit silly. At your age such a low dose is not likely to change much - except allow you a better quality of life. Professor Dasgupta of Southend, THE GCA guru for many years in the UK, told us a few years ago in a seminar that he often keeps patients at 2.5-3mg as it reduces the risk of relapses and returning to high doses. It would be crackers - not to mention poor medicine - to put you on another drug at this low dose. They aren't guaranteed to work to get patients off pred anyway and they have adverse effects of their own. And if your adrenal function isn't up to snuff you will need some steroid anyway.
It is a piece of nonsense not being able to see a doctor - put in a complaint.
PMRpro, You're right about staying on a low dose to prevent flares, but the prescription the rheumy wanted updated was for a painkiller that I use.
When I saw the rheumy back in May she prescribed 15mg codeine tablets and separate 500mg paracetomol tablets, and told me to contact my GP about continuing the prescription.
My local pharmacy told me that if I need them, and the rheumy has prescribed 15mg of codeine tablets, then they should be on a repeat prescription rather than me having to spend £10 a week of my state pension on the Solpadeine Max soluble tablets I now buy. They also told me that they have Co-codamol soluble tablets with 15mg of codeine to 500mg of paracetomol, but that they are prescription only.
So the pharmacist suggested I get in contact with my GP to see about getting the prescription turned into an on-going one for 15mg codeine and 500mg paracetomol soluble tablets, rather than the separate solid tablets I now have.
I duly filled out a triage form online and submitted it to the surgery, and it was this I was getting worried about, as I'd heard nothing back about it.
I went to the surgery this afternoon and spoke to one of the admin ladies. She told me that as yet the form I filled in had not been seen by a GP (after 2 weeks!), but that she would make sure one of them saw the form today and contacted me about it. I've heard nothing so far, but the surgery is open till around 6pm, so I won't know till the end of the day whether she's managed to get hold of one of the GP's or not.
Whatever happens I'll update you here on what the ongoing situation is. I also agree that the triage system is somewhat flawed, both in theory and in practice. If you're ill, you don't want to try and sit at a computer filling out a rather ambiguously labelled form and submitting it, with no idea as to whether the form will even be passed on to a GP or not.
Furthermore, the idea that you should submit your details to an impersonal online form and then have to wait on tenterhooks for an unspecified amount of time to hear whether your situation is judged to be urgent enough to be granted an audience with the God of Medicine and Healing, is not helpful at all. After all, your situation might deteriorate after you fill out the form and send it in. What do you do then? Fill out another form and submit that, in the hope that it may be perused by some unseen and unknown admin person, who will decide whether you can be admitted to the holy place or not?
The whole thing is absurd, but if I complain, it will have to be to someone above the surgery level, i.e. some form of health ombudsman, who can then direct the all the surgeries in the group to amend their procedures. Otherwise, it will just mean getting into an argument I don't want, with people who will then resent me for even being on their list, regardless of the reason.
So for now I'll try to keep things civilised, and not complain as such, but just keep reminding them of my case. If that doesn't get any results then indeed I'll contact the big guns and get them to sort out the surgery, because as you say, "It is a piece of nonsense not being able to see a doctor".
If you want to go above the practice itself you used to go to the CCG, the Clinical Commisioning Group, but they were abolished in June 2022 and replaced by the Integrated Care Systems.
To find your local one go to
nhs.uk/nhs-services/find-yo....
and look under Contact Us (at the top of the page) for the phone no. to contact NHS England to discuss a complaint or problem.
PS - it is a piece of nonsense that ALL patients are expected to apply online for care - a large proportion of the elderly and a lesser proportion of other patients are thereby ostracised from care. It is discrimination and absolutely NOT acceptable.
Oh, one more thing. This evening at 7pm I received a text from the surgery saying that my prescription has now been sorted out, and is with my local pharmacy. So at least I got a result on that particular point, but only because I followed it up and chased them for some action. If I hadn't done that then my form would still be sitting on their system, unloved and unread!
I had similar hip pain. Periodically when lying on it. Mostly a periodic sharp jabbing pain when I was walking. It turned out to be the peroformas (sp) or bursitis. Either way PT took care of it.
Thanks! Glad PT took care of it.
piriformis muscle.
Apparently there are doctors who "don't believe in it"!
I have had enough pain to keep me awake at night on occasion - a mixture of PMR and a bursitis I think. I found by chance on a holiday to a cottage for 10 days with no steps that the bursitis much improved. I now try not to go up and down the stairs too much at home or occasionally try one- stepping to avoid stressing my right hip. The other thing, as someone else mentioned is to sleep in the recovery position to spread the weight. I put a pillow under the knee that’s spread out and one down the centre of my body and that helps a lot. I thought I couldn’t lie on my stomach because my spine isn’t that flexible and I have bosoms that don’t appreciate being squashed ! But the pillow takes care of that ! I took a ‘night nurse’ cold capsule recently and that was the first full 8 hours I’ve had in a long time ! Every now and again I take a form or ibuprofen called Flarin. It says on the packet it is combined with a lipid which makes absorption different. Supposed to help with pains in hips. Perhaps worth a try along with a couple of pillows ! See how you get on.
Thanks! Pillow are a good idea. I've never heard of Flarin, but I just ordered some. Worth a try.
Shoot. Just found out I can't order Flarin in US>
You might be interested in the first part of this article - not usually a source I would quote but it is the simplest I can find making the point! It isn't any different from other forms of ibuprofen. Apart from costing 10 times the price ...
dailymail.co.uk/health/arti...
Thanks so much. I appreciate your research. Now I won’t have to worry about not being able to get Flarin. I can’t take too much Ibuprofen because I’ve had stomach ulcers and thought maybe Flarin would be the answer. I should have known it’s just hype and marketing.
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