Unusual (?) leg pain: Three years in, back up to... - PMRGCAuk

PMRGCAuk

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Unusual (?) leg pain

maxismall profile image
16 Replies

Three years in, back up to 7mg pred having got down to 5.5mg. For past two months am having pain in quads (where PMR tends to manifest) which is a bit unusual. I get very stiff & painful quads after sitting down or being inactive (eg driving). When I go to move, the pain kicks in but within a few minutes of moving about, it subsides. Worse in right quad than left. Thoughts most welcome as to whether this is PMR related or something else. Thanks.

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maxismall profile image
maxismall
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16 Replies
SnazzyD profile image
SnazzyD

Yes, stiffness after rest, such as driving can be a feature of PMR. Of course one can get this under non-PMR circumstances such as spending a day gardening say and then doing a couple of hour’s driving might make one a bit creaky. However, finding it is creeping on as a regular occurrence when you have been inactive might be signalling that PMR is having a go.

maxismall profile image
maxismall in reply to SnazzyD

Thank you. In that case, is it also an indication I am not on enough pred?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to maxismall

Could well be, did it come on following a decrease in dose?.. and as you've had it a couple of months has it got any worse over that time? If so, maybe go back to previous dose and see if that helps at all.

maxismall profile image
maxismall in reply to DorsetLady

I went up to 10mg for a week or so, then back down to 7mg which is 1.5mg above where I thought I was OK. When at 10mg, it was because of a definite increase in PMR pain ie with me all the time. This pain after resting has kicked in since.I would be interested to know about the physiology behind movement helping with the pain please? Not stretching, just walking helps & quite quickly.

Thanks.

I think I may have to increase pred further.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to maxismall

Not sure what is causing the pain then... after you reduced to 7mg could you have done something that has triggered it... If not, then as SnazzyD and you have both suggested it is your PMR...

Maybe try the flare protocol [below if you need it] and see what happens - and dropping back to 7 or 7.5mg , if that doesn't solve it, then back to the drawing board -

healthunlocked.com/pmrgcauk...

maxismall profile image
maxismall in reply to DorsetLady

Definitely no trigger for this. Will do flare protocol again. Many thanks

PMRpro profile image
PMRproAmbassador

I would suspect that you are absolutely at the borderline of enough/not enough pred.

I think quite a lot of the movement helping is related to blood flow and vasodilation - I experienced something similar in the evening after a glass of wine with dinner ...

maxismall profile image
maxismall in reply to PMRpro

That would explain why right leg is worse than left - I have varicose veins between knee & midway to groin on the right but not on the left leg.PMRpro , your comment that I am borderline gives me confidence I will not have to increase by too much. My grateful thanks.

PMRpro profile image
PMRproAmbassador in reply to maxismall

If you can tolerate it and it isn't worsening you might just need a smidgeon per week - one day with a bit more maybe?

maxismall profile image
maxismall in reply to PMRpro

Much to think about. Wish I had a crystal ball!

PMRpro profile image
PMRproAmbassador in reply to maxismall

Don't we all - and don't believe the doctors who claim they have one!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to maxismall

Get in queue…😂🤣

Timelost profile image
Timelost in reply to maxismall

I was diagnosed with PMR even though all the pain was in my calves and behind my knees. I tapered down and eventually came off Pred but all pains came back so started on 10mg, then 5mg, then 4mg. Pains came back at 4mg so realised that I’m ok on 5mg. Been on that now for 2 months and it seems that it’s the right ,even for me.

,

Timelost profile image
Timelost in reply to Timelost

….level….

PMRCanada profile image
PMRCanada

I too developed sore quads after being on 5.5mg pred for 5 weeks. So it’s been around for 2.5 months now and sometimes my quads are tender overnight. No soreness/stiffness anywhere else. Perhaps I’m having a reaction to being on pred 6 years now (muscle pain/tenderness/waisting/weakness)?? Of note I’ve been able to continue tapering down to 5mg but very slowly, similar to my last drop.

Hope you find the right dose for you and that you get relief of your symptom involving quads.

maxismall profile image
maxismall in reply to PMRCanada

Thank you. Going up to 10mg today for a few days then will try 8mg & take it from there. Very best wishes from my quads to yours.

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