Hi everyone, this is my first post on here, but I've been following posts for some time, and gaining valuable knowledge from others.
PMR diagnosed December 2016. Reducing slowly and successfully mostly. I got down to 4.5 mg preference in march, overdid exercise and started to get pain and stiffness in hips. Hip pain seems to be my problem area but there's a fine line in trying to keep fit and not overdoing it. I overstepped the line after having physio for hips back and an old knee problem/injury. I think the physio exercises along with starting short distance slow running, aggravated things. I went up to 7 mg for a while, now down to 6 where I've been for weeks now. Some days this is enough, other days not. I often wake with stiffness and soreness in hips, usually this goes mid afternoon. Some days I can walk 3/4 miles at a decent pace, other days I can barely get up the stairs. GP did blood test for RA... negative. He seems to think it isn't PMR related. I do!
What to do!??
Up the pred? Even though shoulders, arms etc are ok.
I've read about steroid injection into hip area...might this help?
A scan to see what's going on?
Dexa scan 12 months ago showed great results. A pelvic/hip X ray just before PMR was diagnosed showed nothing abnormal (was having terrible hip pain then).
Many thanks everyone
Lynda
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Lyndab62
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"along with starting short distance slow running, aggravated things"
How did you start? You really do have to start VERY small and increase both duration and intensity VERY slowly.
Have you noticed how the good and bad days relate to each other? Do you do more on a good day - and is it then followed by a worse day?
If any bits are bad - you may need more pred. Only you can tell. x-rays etc won't show up trochanteric bursitis - which it sounds suspiciously as if it could be - it is a diagnosis made by symptoms and examination. I find having steroid shots (local, not into the joint) sorts bursitis far better than trying to use oral doses. You need too much for too long. If the bursitis is due to the PMR then rest/the exercises so many doctors suggest don't work - the PMR tops up the bursitis.
Thanks for your reply PMRpro. I should have said "restarted" running. Very gentle, flat, 5 mins max, whereas I had been doing more previously. I think the repetetive physio exercises along with starting to reduce caused the hip pain. I've given up the running now.
I've been wondering why I'm good some days. I'm better at weekend when I'm pottering around and not sitting too much, which is when hips are more sore. Worse at work, and when sitting for long periods, and although I have a standing desk I'm wondering if this isn't helping the hips. I'm rethinking the set up. If I do more on a good day, I'm usually ok the day after.
Bursitis sounds like a possibility? I'll discuss with GP.
Have you tried a 500 mg of Tylenol to help with pain. It’s fairly benign. In the US it’s Tylenol. Not sure the name in the UK. I know we are trying to not take more meds but you can take as prescribed on bottle and get the pain cycle under control,, plus do all of the other recommendations from the others in our group to assist with your progress. I love to do water aerobics and move .. and walk.. but I do have breakthrough pain and the Tylenol really helps me. Good luck 🍀
Tylenol is only benign in relation to the stomach compared with NSAIDs. It can damage the liver if taken for extended period of time, even at no more than the maximum allowable dose.
Just a note about Tylenol. Thanks to all above re: it’s usage and side effects.. For me it does seem to help me with the exercise piece. It takes the edge off. Better than taking more prednisone . I sometimes tend to over do. I am still trying to find my way regarding to much and or to little exercise. This is when I use it.. knowing and always keeping in mind the facts related to taking drug. Thanks!
My hip pain was caused by issues with my spine (nerves being impacted by spine gradually compressing due to gravity I guess) , sorted by physiotherapy and exercises I do daily. But I can't run, sadly, as the impact brings on the hip pain and back pain all over again.
Hi HeronNS, I have 2 bulging discs, and a dodgy knee from falling off my bike about 3 years ago, pre PMR. Like your situation, could be linked to the hip pain?
Hi there I have had on going hip stiffness and soreness since diagnosis. I feel ancient and can’t ever imagine life without it! I have had PMR for roughly 2 years diagnosed 18 months ago. I take 2.5 of prednisolone. I find massage and baths help
I have thought about the pred. Second time down to this level I did get down to 2 but went back to 3. Since starting I have had a nightmare with my teeth and also have high cholesterol. So will be starting statins this week I think. So I guess I am trying to balance everything. I just can’t ever imagine being able to get out of the car after a journey of an hour without being stiff. I am working full time in a pretty tough role and counting down the 3.5 years before I can retire early. Maybe I will be PMR free by then look forward to hearing how you do😀
I've slightly lowered my cholesterol from 5.7 pre pred to 5.3 recently. If I remember right! Through diet...high (good) fat, low carb, cutting sugar.
I'm the same getting out of cars. My hips are so stiff. Ive recently found if I can stretch a little, wiggle around a bit, lift my bum up and down off the car seat eg at traffic lights, amazingly it helps.
I'm similar work wise, aiming to reduce to 3 days per week in 3 years or so. Full retirement still a way off 😢
Do some reading and think more than twice about statins, They really don't prolonge life esp. in women. The rheumy and I are questioning statin myopathy and PMR. I am not a doctor and I don't want to scare you but I would like you to be aware of the side effects of statins. For me , they are a definite no go and I think I've tried them all.
Thanks so much yes I am really worried. But I am 53 and have a family history but had managed on diet previously! I have had bloods today so fingers crossed things have improved!
I am wondering if the hip x ray was for cartilage to see if it was close to bone on bone. I should think if you are having any Osteoarthritis or needing a hip replacement it would have shown up on the x ray. IF you have some hip damage a steroid injection usually does help. Or it's muscular from the exercise. In which case some tylenol or ibuprofen should help that pain and you would know right away if it goes away. Prednisone isn't going to help overuse pain I shouldn't think. Running might be out. I was a runner and now a walker. Not at all the same thing, but probably wiser!! Do you swim. Swimming can be glorious. In any case. I have no idea what is going on with you (so why am I talking! haha) but perhaps an X-ray on the hip is in order.! Did your PMR pain begin in hips? if not I really think this is different. ... (seldom right but never in doubt! so listen to others first! )
Hi yogabonnie, thanks for your reply, all input is worthwhile...so keep talking haha. I'm walking as much as I can, shorter walks just now. I was swimming whilst on holiday which seemed to help, something to find time to keep up.
The hip x-ray was all good, dexa scan good, so I think it's inflammation/bursitis.
Hip pain was horrendous before I was diagnosed, and now at lower pred doses it's more of a problem again, although nowhere near as bad. When I was around 9/10 mg I felt good and was more active.
Saying all this, fatigue when reducing has always been a difficulty.
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