Painful thighs

[Luvtostitch]

I was diagnosed with PMR and GCA a couple of years ago and am now have tapered down to 3 mgs of prednisone. I have been having terrible muscle pains in my thighs. First the right leg and now it’s the left thigh. Very painful to bend down. Could this be PMR related?

[SnazzyD]

Is the pain like a line down your leg? Is the pain anywhere in particular in the thighs? What sort of bending down hurts?

[Luvtostitch in reply to SnazzyD]

Front of thighs, can’t lift my leg, getting up and sitting down. I wouldn’t say it was a line down my leg.

[SnazzyD in reply to Luvtostitch]

Sorry, more questions. Is this very new? Have you always been comfortable before reducing your Pred dose? When did you last reduce and what size was the drop? Have you done any thing new? This can be doing a once in a blue moon task, new footwear, extra exercise etc.

[Luvtostitch in reply to SnazzyD]

This has been going on for quite awhile....reduce a few weeks ago from 4 mg

[SnazzyD in reply to Luvtostitch]

Have you reported this to a doc yet? It may be you’ve reduced too far. Did you jump down 1mg in one go or phase it in? What dose of Pred were you on when your legs started up.

[Luvtostitch in reply to SnazzyD]

I am seeing a np now, reduced 1 mg at a time. I was on 5 mg when started. So this could be a flare up of PMR.

[SnazzyD in reply to Luvtostitch]

What dose were your legs happy on? How long did you give before reducing again each time? At this level it is often easier on the body to reduce by 0.5mg.

[Luvtostitch in reply to SnazzyD]

Been so long I can’t remember. At two to three weeks

[SnazzyD in reply to Luvtostitch]

I’m not sure what an np is. Do they oversee your steroid dosing? Usually when PMR pain comes back people go back to a dose where they were last comfortable. If it has been uncomfortable for a long time and you’ve reduced anyway , it may be you need a review.

[Luvtostitch in reply to SnazzyD]

Np is nurse practitioner......I think you are right. Thank you for all your help.

[PMRpro Ambassador in reply to SnazzyD]

In my experience NPs - who in their place can be wonderful - are not sufficiently informed to manage PMR. Even when they have done the prescribing course, they don't have the knowledge or background required - and to be honest, I'm not sure of their level of autonomy. Must ask the daughter, who is a paramedic currently doing the prescribing course as part of her MSc.

[SnazzyD in reply to PMRpro]

My working experience with NP’s is that there are some brilliant ones, but the role allows a very easy slide to operating way above competence because GP’s lean on them an awful lot. It can be one of those situations where you don’t know what you don’t know and the ones with an ego and a few top up courses were are a liability. A nurse career experience can be vastly varied too. I refused to do the prescribing course just before leaving my full time post of a practice nurse because it was deemed that once you had that, the GP’s I worked with dumped all the complex medication reviews on the PN. Suddenly the PN had their consulting too list like the GP with no filter. There was all of the responsibility and penalties but none of the support or protection, in a role that was far too fluid. As nurses generally we would get many patients have a sore finger just to get in to see us with another problem because they knew we would give them a thorough consultation. I just used to do the exam, notes and order bloods and then pass them over with potential differential diagnoses.

[PMRpro Ambassador in reply to SnazzyD]

Couldn't have put it better myself Can be the same with paramedics in GP practices although they are really good at sorting out the real needs as that is all they did on the ambos.

[SnazzyD in reply to PMRpro]

Oh yes, last year a cocky paramedic was blue lighted to my father-in-law here at home for a deteriorating chest infection on a Sunday. He spent most of the time telling me how good he was and then proclaimed that there were no crackles in the lower lungs, but I think he was mistaking no breath sounds for clear air passage because he was talking most of the time. The GP on Monday called for an ambulance within 5 minutes, then told me off because as a nurse I should have known to get him in sooner! Ooh sir, how very dare you!

[PMRpro Ambassador in reply to SnazzyD]

Beware the silent chest!!!!!!! Ignore it at your peril. I hope you put in a complaint? Wonder what he'd have made of OH's very strange chest sounds!

[SnazzyD in reply to PMRpro]

I didn’t because I couldn’t prove anything. He could easily say that the chest was fine on Sunday and the deterioration occurred after his visit. I was also on my knees looking after him with my sluggish adrenals.

[Janstr]

Muscle pain in my thighs was my first PMR symptom. It got so bad that I had to lift my legs with my hands when crossing styles. It was like lactic acid after heavy exercise, but was different as it never went away.

[PMRpro Ambassador in reply to Janstr]

Hear a lot of people say about lifting legs with their hands - I never had that, just claudication when trying to use the cross-trainer at the gym and mercifully that went away as soon as I stopped.

[powerwalk in reply to Janstr]

Oh i used to have to get my husband to lift my legs to try put them up on sofa!!!

[Tinasleepyhead]

I was diagnosed in March 2020, some of my symptoms were pains in my lower legs, difficult to get out of bed had to slowly lift them with my hands. Was put on 15 mg and was advised how I must reduce. The prednisone was like a miracle to me, going down monthly by 1 mg. When I got to 3 mg pains returned, looking back symptoms had actually returned at around 5 mg dose, but were masked due to suffering with a muscular back problem. I went back to 5 mg but still uncomfortable so am back at 10 mg now and feeling so very much better. Haven’t been able to speak to a Dr just messages back and forth but finally have a telephone call booked to speak to Dr tomorrow.

So very relieved to have found this site, it has been invaluable to me, I thank each and everyone for their contributions.

[Choco-Holic]

Hi, I seem to be mirroring your journey and have very similar traits at the present time. I was diagnosed with PMR/GCA two years ago and had tapered down to 1mg (I also take methotrexate). For the last few months I’ve had what I can only describe as a tight band around the top of my thighs/butt when I bend down (as if I’d been to the gym and done squats, but clearly haven’t). I’ve mentioned it to the nurse every call and I have only tapered when my CRP/ESR were ok, but she never really said much about thighs. Over the last few bloods my inflammation levels have been raising so I rang and asked to speak to rheumatologist as I was concerned I was heading in the wrong direction; she told me to increase by 3-5mg and that we’ll keep a check on markers.... I did mention that this is what the lovely people on this forum advise (in a way that I wasn’t telling her what to do haha). I’ve taken an extra 3 mg and the thigh problem has greatly improved, so I will have to see how the inflammation is in 7 days when I next get bloods done. It’s disappointing when you feel like you’ve come so far and hit a stumbling block, but hopefully we can gain control again. If it weren’t for this page (I am an avid daily reader) I don’t know where we would be. I am eternally grateful to the expert advice shared. I hope sharing this with you helps x

[GrannyJane]

I have now been diagnosed just over 1 month, started on 15mg and went up to 20mg within a week because I was still very stiff every morning. Initially fine but pain and stiffness crept back with another week. Then started taking 5mg at 1.30-2.30 whenever I had 1st loo stop, this worked a treat and GP happy for me to experiment.Got up this morning and the old pain and stiffness back with a vengeance! I slept really soundly after taking Nytol so maybe didn’t move enough in night? Did take my early morning pill at 1.45. Also ate and drank we’ll all weekend so maybe body complaining of over indulgence!

Am having bloods tomorrow so maybe GP will suggest I start tapering, it sounds from all your really helpful comments that this should be done really slowly, what is good to drop to from 20mg and what dosage should I take in the night?

All suggestions gratefully received.

Good luck Luvtostitch with your next step. x

[PMRpro Ambassador in reply to GrannyJane]

Not further than 17.5mg to start but if you aren't fully settled at 20mg after a month I;d give it another couple of weeks.

[Noosat]

PMR started in my thighs, quadracep muscles. It was so painful I did not sleep for three nights. This was 2 years ago. I have tapered down to 2.5mg. If I get any discomfit in those muscles, I take Tylenol and so far that has worked for me. Right now I am recovering from Heart valve operation, so watch for pain. So far ,so good, but perhaps will have to go up in dosage before recovery is over.

[powerwalk]

All I do now is go aaahhhh when I try to sit down or stand up. My thighs feel like they have been lifting heavy weights. Very wearing.

[Luvtostitch]

Thank you all for the replies which were a tremendous help!

[1951grumpa]

When my inflammation returns it has always starts in my thighs.