A couple of weeks ago I mentioned that I was thinking of consulting Professor Dasgupta. I decided against it in the end (a long way away)and went to see Rod Hughes instead. I was very pleased with how the appointment went and came away reassured and with many questions answered.
My problem has been around whether I do indeed have PMR as I have never had any shoulder involvement, it's always been my lower back (initially), but particularly my thighs and really painful shins such that walking is very difficult. It seems that there is wider variance in symptoms than descriptions eg on the NHS website suggest.
I'd be interested to know of others with leg involvement only (though I guess a separate post would be helpful).
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FleetRose
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As you have legs in the title- it has elicited a couple of related posts - not sure a new post will bring up many more. There don’t seem to be that many - and those that are about seem to be quite old.
I doubt it really needs a new post - people will see this one.
There are people with just hip girdle symptoms and it does say fairly clearly in rather better articles than the NHS sheet "hip and/or shoulder girdle" involvement. Some have just shoulder stiffness, some just hip and some have both,
I was originally diagnosed with GCA but my ankles and thighs were also painful and before diagnosis one of my tendons ruptured. In subsequent flares my hands and arms become achey and my rheumatologist now also says it is PMR.
Did Rod Hughes say he thought you had PMR? I have LVV and not PMR (although I think I may well have in my shoulder blades and hip), but im hoping he suggestsuggested a treatment plan?
I first noticed it in the thighs - legs heavy and painful when walking. The pains then spread down to shins, up to groin and hip girdle. Shoulders were not affected at all.
For what it's worth, I never had any shoulder or arm pains, or even legs. Mine was neck and hip and my side ribs..and my back, too now that I think about it.
I'm not sure how to 'reply all' to the lovely people who posted a response to the above post but I hope this works.
I was very interested (and reassured) to hear how much people's symptoms varied. There is so much emphasis on bilateral shoulder/arm pain that I was convinced I must have something other than PMR. Apart from initial lower back ache, for the last two years my pains and aches have all been in my legs. I would say I have a more generalised weakness but no pain.
Regarding a treatment plan, I have been advised to lower my pred from 9mg by 0.5 mg per month though I will go slower than this as I reduce. The rationale for this is that many of my symptoms could be the result of the steroids rather than the PMR. A PET scan was also suggested to exclude vasculitis though this was partly to reassure me I think.
Thank you again. I really appreciated hearing from you all.
Good as anything… and not everyone gets all the symptoms listed for PMR, which makes it even more difficult to diagnose at times.
Might be worth considering one of the slower tapering plans to go alongside the 0.5mg a month [which should be okay]. These are similar -and do same job, one based on days, one on weeks - if either take your fancy.
The concept that it is possibly pred causing the symptoms seems to be gaining ground. I'm not convinced myself but hey-ho. However - lower pred is always good!!!
Hi Fleetrose, it's interesting to read that other people have just the leg issues. Mine started with my right hip, which probably wasn't PMR but an MRI showed inflammation in the joint. Then my knees and back joined in and finally my left hip - though nowhere near as painful as the right. The stiffness was so bad that I found it difficult to turn over in bed, get dressed or have a shower. No arms affected, thank goodness. Eventually, after about 6 months of misdiagnoses, it spread to my neck and jaw and developed a persistent headache at the back of my head.
So I did eventually get diagnosed with PMR and GCA. But only after my suggestion that they test my CRP and ESR.
I suspect the biggest issue is that, according to your profile, you already have a progressive autoimmune disease of the thyroid gland (Hashimoto's disease) which can lead to both rheumatoid arthritis and muscle pain (see link below). A diagnosis of "atypical PMR" in addition seems rather bold, to say the least.
Thank you, that is a very useful link. I have tried to make the case for undertreated Hashimotos as a cause for my muscle aches (joints are fine) but both the Endocrinologist and Rheumatologist say my T3 and T4 are "within normal limits" (actually they are quite low) and insist that is not the problem. I am more or less following the advice mentioned on the thyforlife website and trying to find my way through this.
Yes I only had painful calves and behind my knees. I was diagnosed with PMR but often wondered if that was correct. I gradually reduced Prednisolone and eventually came off but all the symptoms came back after a few weeks so I am back on Pred again.
Mine is very similar. To begin with was classic, neck and shoulders, hip girdle. Then I got Covid (just gone from 5mg to 4mg) didn't know about sick day rules. Had a flare and since then the problems have been pretty much leg based. Random pains, tight muscles. Hip and lower back, quads, shins, knees. Involving both legs but not necessarily equally at the same time
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Professor Dasgupta at Rettondon meet today - what a good talk he gave...
First Appointment with Rheumatologist...
Appointment with rheumatologist 
Todays appointment with Rhuematologist
