pmr only in legs

Yes, since my initial miraculous cure of everything when on 15, I have since experienced discomfort only in the upper thighs. My legs were the first part of my body to "go" when I was developing PMR and I suspect that this part of the illness may stay with me forever. What does your rheumatologist expect - that you either manifest ALL the symptoms or NONE? Despite having been on pred for a couple of years?

manjan, my PMR symptoms initially only attacked my legs but spread to my arms after a considerable time probably through non-diagnosis therefore non-treatment. If you were diagnosed and treated within a short time, that may have been sufficient to halt the inflammation in its tracks and prevent it affecting your upper body. Also your "miraculous effect of prednisolone at 15mg" pretty much confirms the diagnosis.

It isn't at all unusual to experience a flare in symptoms during the first 12-18 months of treatment, and the stress of having a cold no doubt contributed to your flare at 7mg. I'm a little surprised that you were advised to increase all the way back to the 15mg starting dose - increasing by 5mg to 12.5mg would probably have been more than enough to knock the returning inflammation on the head. What matters now is whether you have responded well again to the increased dose and are managing to reduce down again. You haven't mentioned your present dose or present symptoms, apart from your numb feet, and yes that can be due to the Pred - numbness is listed among the possible side effects.

Rather than rush you off Pred, perhaps your rheumy could at least have arranged further investigation, for instance scans of your spine to see whether there is a problem there that could be contributing to leg pain alone. Certainly back problems can also contribute to foot numbness. Why not have a chat with your GP and see if s/he can refer you for a second opinion? Very frustrating for you to be told that the original diagnosis is being queried after as long as 15 months on steroids.

Manjan you are not alone in only having your legs attacked. See my previous posts and replies concerning the legs. The onset was fast, at first extreme pain in the thighs and calves, painful to the touch, the knees and specifically the outer part of the knees was the worst. Legs would give out if I encountered any unevenness in the ground. It is true that the research leaves the legs out, but on my recent evaluation at Mayo Clinic in Rochester, MN the internist and rheumatologist said there is nothing atypical about PMR occurring in the legs and could happen only in the legs. My ankles, feet and hips were not affected. I do get sensations of warmth in my legs and feet, an odd feel which at this time the rheumy says is more than likely disease or prednisone related since it was not there before. I'd say your rheumatologist needs to broaden her understanding of the disease. Prednisone or prednisolone is the medication to treat this and since you are responding stay the course. There is a lot of information on this site for tapering, links to articles and the Kate Gilbert book.

The more I read on these forums the happier I am that I've never been referred "higher up" and - touch wood - have no issues that might require that.

I agree with all Celtic has said. Is this the same rheumy who made the original diagnosis? I have come across other people who "only" have hip/leg problems or "only" have shoulder problems and have had similar experiences with rheumatologists who insist it must be both that are involved. "It is rare" also doesn't mean the same as "it doesn't happen" - as I keep pointing out with the age question.

It isn't uncommon for an original diagnosis of PMR to be doubted at some later stage - and the lack of a definitive test makes it quite likely if you don't behave in line with the pre-conceptions that many doctors do seem to have. I have to say - there are a LOT of people who wouldn't have PMR according to a lot of doctors! Some of them then get left to suffer because they don't match up to expectations.

What a shame the GP went to such a high dose - 10mg might well have been enough if the flare was due to the infection. However, in my opinion the rheumy is being a trifle cavalier to want you off pred asap - after 15 months you still need to reduce slowly. Why can't she try using MTX now - because if it works then you would be able to reduce the pred more easily? Not something I would usually say - but I fear you are going to have a fight on your hands. Unless, that is, you can be referred to someone else in a different Trust or your GP will take on the rest of the management. If it fails though you run the risk of having to see her at some later point and she may be even less sympathetic.

When I first started suffering with PMR I had pain mainly in my hips and legs. By the time I was diagnosed I had pain in my shoulders and pins and needles in my hands. My hand pain was the first thing to disappear when I started on prednisilone. It took years to be diagnosed as I was too young to be considered to have PMR.

Sometimes I think we might as well google our symptoms, some Doctors seem to be working from a tick sheet and don't look at the patient.

Good luck with the fight.

How interesting to hear you have numbness in your feet - I have mentioned this several times (last year) to my Rheumy that the 3 outer toes plus the fleshy front part of both feet have definite sensation of mild numbness - mentioned this on this site some time last year. He suggested if it continued an MRI might be needed. Haven't mentioned it again.

I don't know if this is a side effect from steroid use but I certainly was not aware of it prior to PMR diagnosis early 2015.

I too have been very slowly tapering as of Dec 2015 & was going well until I had a second lot of ultrasound guided sclerotherapy which has contributed to a flare in my PMR. My varicose veins now worse than ever before.

Was down to 10 mg Hydrocortisone which is equivalent to 2 mg Pred - I've increased to 15 mg as finger & toe joints now slightly swollen & painful along with touchy neck & shoulder region.

Talk about complications - my sympathies with you with possible steroid withdrawal, I too am sensitive to the changes & have noticed the return of slight woolley brain since upping just 1mg.

Special thoughts go to you in the hope that your Dr will listen to your concerns & take you seriously.

It took 2 years for me to get diagnosis of pmr despite telling doctors my mum had it. Mine started in legs. I was given physio, acupuncture and naproxen. The pain spread to my arms, shoulder and neck. The only thing that really helped was a steroid injection in my knee, which took all of the pain away. My doctor then agreed to put me on course of steroids. Rheumatologist was not happy, but meds gave me back movement and pain free.

Add me to the "only in the hip girdle area", "no raised inflammation markers" (while on pred!!!), and alongside general improvement the development of quads. weakness. How many times does a rheumy have to say someone is atypical before they realise what the incidence of non-typical case but with magic response to pred is telling them? At least my rheumy does listen and takes a copy of the summary diary I bring with me and as I have Parkinsons it does make it hard for the rheumy to be sure what is what. And I have been MRI'd, quad muscles tested and back and hip X-rayed to see if there a re other causes contributing to the picture so I am satisfied that nothing is being ruled out in an arbitrary manner- indeed her letter to the GP is very lengthy. My appointment has been put back to be nine months from the last so we're back to paddling our own canoe so to speak. It is very reassuring to have confirmation that lower half affected is common in PMR at least initially.

How upsetting and frustrating for you to have your diagnosis questioned and to have to go back up to 15mg. Have no advice really but just to say giving you a virtual hug and hoping this will be sorted out soon, remain strong and remember your the only one that really understands your own body and how you have responded to pred. xJackie

At the onset of PMR my arms, shoulders, hips and legs were affected. With this last flare it was the girdle round my hips and my legs that were affected - no arms.