Hi Folks,
My wife has had debilitating lower body pain in her right hip and down through the front of both legs for more than 6 months now. She gets very little sleep due to this, and has had every test imaginable.
Is it conceivable that she may have PMR, or that taking a short course of something like 12.5 mg of pred for 5 days may rule that out, or possibly improve her condition?
All thoughts very welcome. Thanks, Michael
The fact it seems pretty one-sided inclines me to think something else. But never say never. If it is PMR then I don't think that 12.5mg for 5 days would tell you anything much - that is a very low starting dose and 5 days if often not long enough even at higher doses.
Could it be this:
sportdoctorlondon.com/burni...
Whatever it is - it sounds more like a nerve pain than muscle pain which characterises PMR.
Thanks very much for such a prompt and thoughtful reply.
Roxanne says the only burning is her passionate love for me, so as you can tell, after 40 years together she still has a sense of humour.
Rox says it feels like psiatic back pain that radiates down the outside of her right leg. This is combined with both quads feeling tight and painful, making it agonizing to walk, and especially to climb stairs.
We agree that this doesn’t seem like PMR, but I still can’t help wondering if there may be any possible benefit to testing a short course of pred.
If we did, what dose and time frame would you suggest to rule it out?
The reason I wondered about 12.5mg was because I found an interesting article on starting doses at:
ncbi.nlm.nih.gov/pmc/articl...
Thanks again for your thoughts. I’m hoping we can find some kind of beacon that may illuminate a path forward. So far the only light at the end of this tunnel has just been another pain train coming!
Mmm - but that 12.5mg starting dose took up to a month in some patients!!
Now then, now then, Roxanne, steady on! Anyone would think you were newly-weds! Wait til it gets nearer 50 years 
Ah - outside of the thigh and stairs a no-no: how about greater trochanteric pain syndrome?
nhsaaa.net/allied-health-pr....
yourphysio.org.uk/condition...
I have it and can vouch for it causing similar symptoms to what your wife is describing.
Thanks for the sleuthing Sherlock 👌 I’ve forwarded all links to Rox and queried her on some of the symptoms. Her pain is not sensitive to touch, and it does go below the knees all the way down to the ankles. She’s also been doing exercises like some of those shown for quite awhile now. Not only has nothing helped, but the problem has become more acute.
At this stage we are trying to get municipal approval to add an outdoor elevator to avoid the need to climb up and down 31 steps to our garage, at our home where we’ve loved living for 28 years. We’d both hate to leave just because of this!
That track of pain is very typical of sciatic problems - has she got buttock pain too? Not so much sleuthing - person experience of similar pain!! The last 6 months have been excruciating but luckily the one thing I can avoid is stairs!!! It has been law here for about 20 years that any building with more than 3 floors must have a lift. The last 3 years without a lift would have been impossible.
Those external lifts are quite popular here since almost everyone has a balcony for them to open onto.
hi mikevanBC
My PMR started with what I thought was sciatica , and when thinking about it it started in April. That was in the right side then it started in the left as “ sciatica” which steadily progressed to crippling pain in both hips, buttocks ,thighs and shoulders . I could hardly walk at times and found it very difficult to sleep at night due to pain. I think she needs a second opinion .
After reading your second reply to PMRpro I am wondering if this could be the cause.
asahq.org/madeforthismoment...
I had this and found and acupuncturist. It disappeared after a few sessions.
One way to check that might work is for your wife to try painkillers and if they work it probably is not PMR, as steroids are really the only thing that work well for PMR. I you can get your doctor to prescribe say 15mg for a week and they work well, it is quite likely it is PMR.
Thanks Piglette. Painkillers have not proven effective. That's why I'm wondering about pred. She'll raise this issue with her Doctor tomorrow. And it does seem that a test requires a longer course and greater dose than the 5 days at 12.5mg I was considering.
I think I would push for 15mg as 12.5mg is a bit low for some people. The majority of people have a result pretty quickly, mine was less than 24 hours, a week should be OK to see if there is an improvement. You can then just stop taking them. If you take them too long you then have to taper down. Some need a slightly higher dose.
I have to say it sounds rather like my sciatica which is in my left leg. It starts at my buttock and goes right down my leg. I have had it for about 6 months, getting better for a while and then coming back. Amitriptyline has helped me.
I had similar experience to Bluepin
That is exactly how mine started too initially in one hip - as I had sciatica when I was pregnant thought it was similar to start with but over about 6 weeks it got worse on both sides and only then went into shoulders as it flared further. Walking upstairs was worse than down for me and couldn’t put weight on my left side so although it was in both sides it was never completely even.
Pain and stiffness stopped at my knees and elbows but achy to my ankles linked back to knees I think.
Painkillers don’t work just take the edge off. It took 5 months to get a diagnosis but after 2 weeks on 15mg Pred it was 80% better - very marked improvement.
Thanks Rynn. The mystery here is that her pain has so far only remained in her lower half, so that makes us all think it’s not PMR. And what are the odds that we’d both get PMR in the same year?? That’s why a friend of mine jokes he packs a bomb when he travels, for safety reasons, because the odds of 2 bombs on the same plane are insanely low 
You got a brother? 😊
I love that your wife has kept her sense of humour in spite of what she's suffering at the moment. I hope she gets some relief from the pain soon. Best wishes to you both, you sound a great couple!😊
I agree with Piglette. After a knee replacement I suffered excruciating pain, but only in one hip, for 10 months. Had all the tests they could think of. Lost over a stone; could not move or sleep. Became so weak that I eventually fell down a few stairs and broke my hip. We hoped that perhaps I had had an occult fracture of the hip and things would improve. They didn't. I had had PMR about 3 years previously and mentioned this to my surgeon. He said "go to your GP and try some steroids." I was started on 15mg and it made a great improvement almost immediately although it has taken a while to settle. I can't see any reason not to try 15mg of prednisolone to see what happens. That can sometimes be the only way to tell if it's PMR. Good luck. XX
My symptons started on my left hip gradually going across the groin and right hip but felt I could walk after 3 days of being on 15mgs. Since decreasing to 3mgs since January it's spread everywhere. I would think if it's treated with Preds and it was PMR then there will be a difference.
agreed Rozzy. So far her doctor wants her to avoid prednisone and use pain meds, which haven’t worked yet.
I was a year undiagnosed until I was so crippled with the pain which painkillers didn't help. Blood test shows up inflammation as it did with me. Doc put me straight onto 15mgs, it was like a miracle after 2/3 days. But also after nearly 9 months and reducing every month till on 3mgs, its all come back, neck, shoulders, arms, back, hips, groin, legs and knees. If I ever get to see a rheumatologist I reckon I will have to be put upto 15mgs again for a longer spell rather than just 2 weeks and reducing too quickly I don't think has helped. Unsupervised for too long. How long has your wife tried with the painkillers.
No - longer at 15mg won't make any difference. You aren't supposed to be reducing relentlessly to zero - you are titrating the dose to find the lowest effective dose for YOU. The speed of reduction is often immaterial - it is reducing too far that brings the symptoms back.
The pred has cured nothing, it is a management strategy to keep the inflammation under control to allow a better quality of life in the meantime until eventually the underlying autoimmune disorder that causes the symptoms we call PMR burns out and goes into remission. Only then will you be able to get off pred altogether - and it may take a couple of years or it may take several years - or anything in between. Pred is like BP drugs for hypertension - they don't cure it, they keep it under control.
In the meantime - you could try adding 5mg to the dose where you have flared and with a bit of luck that should be enough. You obviously do need a fairly low dose though with the speed you have been reducing I doubt it is 3mg, it takes time to build up enough inflammation to causes symptoms and you often miss where exactly it was when you are going down 1mg per month. After a couple of weeks at 8mg, maybe 10mg, you could then drop back to 5mg for a while and see if that is enough. The average time to get to 5mg from the starting dose of 15mg is 18 months so you were doing really well - until you overshot.
They really are impossible! The pain meds they hand out with gay abandon also have side effects long term - and not even that long term, one friend with PMR was told to take ibuprofen and 3 doses landed her in the ED with a gastric bleed! If it is PMR - pain meds DON'T work and are expressly discouraged in the recommendations for management.
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