pmr only in legs

Since diagnosis in oct. 2014 I have had symptoms only in my legs. I say 'only' but at the onset I was crippled by the pain and showing all the symptoms of pmr including the miraculous effect of prednisolone at 15 mg. After getting down to 7mg I had a major flare in oct 2015 (after a cold) and GP put me back to 15mgs, stayed there for 8 weeks.I was referred to the rheumy who wants me off pred ASAP and seems to be doubting the original diagnoses as it is rare to have only legs involved in pmr. She is threatening me with the use of methotrixate. This has really upset me as I am afraid she will bring me off pred faster than I can go( I am very sensitive to pred withdrawal). Does anyone out there have this wretched illness only in the legs? I have read on this forum that some people have numbness in their feet, which I have...could this be due to the pred?

19 Replies

  • 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 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?"

    I don't know how often I have said that as well! To be honest - I can only assume rheumies don't talk to each other!

  • The Rheumies I have see have all been circa 11 or 12 years old. I believe that this could be the problem with them!

    I now have been diagnosed by my GP with trochanteric pain syndrome ( used to be bursitis, but they changed the name)

    It will wear itself out apparently, within 3 - 6 months so nothing to do except rest, and wait. The good thing? is that this apparently marks the end of PMR, so my reduction of pred goes on very very slowly, with positive results, my bloods are normal for the first time, so maybe, just maybe...

    Could this be what HeronNS has got? Sounds similar.

  • There's another load of cobblers! I really need to get off the forums this afternoon before I explode - the rubbish I've read to day is mind-boggling! You feel 100% better on pred in 48 hours, you can go back to work cleaning houses for 40+ hours per week in 72 hours...

    Trochanteric pain syndrome will NOT wear itself out in PMR, it is part of the PMR. It most certainly DOESN'T mark the end of PMR - it was an early sign of mine, returned about 4 or 5 years ago and is there in the background even now if I walk too much or do too many stairs. The best approach is to use local cortisone injections in the hip - and that is courtesy of the anaesthetist I saw in the pain clinic here, not just my personal opinion. Bowen therapy also helped mine noticeably but it didn't cure it.

    Icing MAY help a bit - but if you "rest" it needs to be no walking, no stairs in particular. Mine did improve dramatically when I reduced stairs to a minimum but even then I could barely step onto the kerb after crossing the road. Can you face 6 months doing nothing at all? Is it even possible?

    The Leeds research group is contemplating the idea that things like local cortisone shots/physiotherapy and so on should be used as appropriate. There are a lot of such things that I call "add-ons" in PMR and if you can eliminate them by more targeted therapy then you often can manage with a lower dose of pred for the PMR.

  • Sorry PMRPro, I certainly didn't have any intention of upsetting you.

  • It wasn't you that upset me - it's the eejits who say these things about PMR and pred and how we react when they haven't a clue! Sorry, please ignore my rant and read the rest of the post - which WAS directed at your problem!

  • PMRandRA, I have two leg pains; one is the pmr pain in upper thighs, the other is in my right hip, bothers me when I walk and also when I lie on my side and is almost certainly due to severe osteoarthritis in L5-S1 vertebrae. It feels different from pmr discomfort. That hip pain also disappeared when I was on my highest dose of pred (15 mg) but returned as I reduced and is now pretty much the way it was before, although the pmr burn is kept pretty stable and tolerable by my current dose of pred (7 mg) and I thankfully don't have debilitating pmr shoulder pain any more.

  • Mine was both thighs too, but the left thigh to a lesser pain extent because it is partially numb from a crush accident, so I can't feel the pain in all places. But the right one sounds the same as yours, with severe burning pain which goes down and through the thigh down to hallway down the Fibular, where It stops. I can't walk without help, sticks, pushing walker or just holding on.

    My xrays show severe osteo in the right hip joint, and within the pelvis itself and both my knees, which also burn

    Anyway, time will tell and I hope I am not talking nonsense because this is what I was told by my doc.

  • Thankfully, x-rays done at the same time as the spine (a year ago now) show absolutely no issues with my hips - about the only part of my body which doesn't show anything on x-rays, so it's annoying that it's the bit which bothers me the most! I sometimes get pain down my right shin, usually when I am at rest. You certainly have more issues to deal with in the legs than I do. I hope you get some relief. I note you call yourself PMRandRA - is it the osteo or the RA which is most debilitating?

  • 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.

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