In my 6th year of PMR and at 7.5mg after a few flares and hiccups. I had a cataract op five weeks ago. All ok but after three weeks felt pretty rough and chronic tiredness. Upped dose by 5mg for four days then back to previous dose. Now sinusitis symptoms, bridge of nose tender and slight headache on/off. No fever. But tired. Took Panadol which helped. But have what I can only describe as ‘heavy legs’ . They feel shaky on standing and moving. Once I get moving I feel it less - need to walk my dog so keep active. But it’s unnerving and wondered if anyone else has had experience of this.
‘Heavy legs’: In my 6th year of PMR and at 7.5mg... - PMRGCAuk
‘Heavy legs’
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Bachfugue
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Did upping the dose by 5mg help the heavy legs and fatigue?
I’ve just had a bug that gave me a headache in the shape of a cartoon robber mask, with dry sore sinuses and deep fatigue. It lasted for 5 days.
It is possible that you are at an awkward dose regards adrenal function. This is because you were feeling flat before becoming ill, and now you are ill you feel there is nothing in the tank. For me around this dose level I had too little Pred/cortisol to deal with my day, let alone illness too, but too high still for the adrenal axis to be properly triggered into action. It was a rough time but I continued to reduce by 0.5mg over 4-6 weeks ish until I got nearer 5mg and then slowed down even more. I felt pretty rough for that time but had to stick with it in order for my adrenal glands to finally get the message. By 5mg my clouds started to lift. Going up just to feel better just delays the process , but when you are ill you need to pause and perhaps have a bit more Pred and then regroup afterwards.
Thanks for this. I could well have a similar sinus ‘bug’ as Panadol helped. And yes, get it re kicking the adrenals into action. It’s such a difficult one isn’t it? I have been as low as 6mg (about eighteen months ago) but illness and flares etc forced me back up again. I’ll try and sit this one out.
DorsetLadyPMRGCAuk volunteer
Now you have asked question, you can see related posts... but if it's a reaction to adrenals struggling, you have to see it through and hope it improves...
As SnazzyD says upping dose for a few days just delays the process of the adrenals getting the message they need to work.
Have a look at this -
healthunlocked.com/pmrgcauk...
Thanks so much for this and the link. Good to be reminded of the intricacies of the adrenal gland again. And will plod on through for the time being.
PMRproAmbassador
There have been several people who complained about "heavy legs" over the years - none of them have ever found and answer.
Have to ask - are you sure it wasn't Covid?
Could be I suppose. Though probably more likely to be sinusitis. No temp. Will get the inhaler out ! And I’ve booked a reflexology appt next week too. Hope all well in the Italian alps.
Sodding wet - we have had double the usual rainfall in the last 4 months, in May we had had the total normal rainfall by the 20th so on overtime now and it is persisting down! Sick of it ...
Has been p##%%%ing down all day here as well.. finally stopped… but still looks a bit iffy..
It was glorious for a while this afternoon and then the big black clouds built up and finally chucked it down - but no thunder up here.There was this enormous swirl of cloud across Europe, one end here, the other over the UK. So you can claim you have the same weather as Italy!!!! Definitely shouldn't be a drought/forest fire risk for a while ...
Last week Dorset Council was issues fire warnings…. not today!
Asking for trouble!
Probably be issuing a flood warning later this evening 😳
As long as it isn't a tornado - we've had warnings in place for 4 days for landslides and flooding for Tuesday and today!
Flipping’ heck…
And the bunnies around Naples are in fear of a volcanic eruption/earthquakes in the Phlegräischen Fields. Actually evacuating a lot already - that will be interesting.
All drenched in Cumbria. Had just got used to walking the dog in dry weather and now back to waterproofs. Though she doesn’t seem to mind.
My daughter's dog just looks out the door and looks at her!!! "You are kidding???"
Wet weather in France too ⛈️. You know, pred. gets blamed for a lot of things and it could have been the rain all along 😂. The only problem is we have no control over that. We can't reduce the dose!!
Really? The sat image here shows France as quite civilised! Here on the other hand bear no relation to the forecast of sunny intervals! The clouds are a uniform grey ...
I’m wondering that now because I lost my taste for a day but blamed it on the dentist that morning. Not sure what he is supposed to have perpetrated because he didn’t do much now that I look back. I then cooked a stew that everyone agreed was a bit odd after I kept thinking it wasn’t right so added a bit of this and that and a ton of garlic to rectify it. By dinner time I was thankfully oblivious to my ‘creation’. Was ok next day.
Sinus seems to be a common thread for many with Covid that isn't obvious.
Tried to get answers from Max yesterday about heavy weak legs, amongst other things!.......Fibromyalgia......he has ordered blood tests. I told him about the MRI result that I had done.....he said there can be small vessel swelling, told him I will push for Neurology, agreed. No-one was seeing Dr M......all waiting to see Max......unfortunately I have now been discharged......Fibro not listed to see patients at Rheumatology!.....makes me wonder who patients see when GP is no help!.....Read today they are concerned about Versuvius......weather unpredictable everywhere......
Not weather there - it's earthquakes but not Vesuvius, different area nearby
See you had tingling feet as well .. Bingo!! Along with the heavy legs. And I’m at the 7.5mg stage. Will push on ….
…
Yes, sitting here now with tingling heavy legs. Keep trying to walk about, but I end up in the kitchen, drinking too much tea! Like you say we push on. I am on 5 mg, have had leg problems too long, it’s balance that bothers me too!
you mentioned balance is a problem...this can become a big problem..especially as you are now walking less...Perhaps try to do some of these exercises
youtube.com/watch?v=uth_9K3...
I can't do anything with my eyes closed and I always need to hang on to something, I also do much less. This is 10 minutes, but I find 1-2 minutes at odd intervals during the day really helpful.
Try and keep moving even if not walking. When sitting lift one knee then the other. Stretch out a leg. Hope you feel much better soon.
Hi Bachfugue (love your name)Yes very familiar experiences for me too and it cycles with each reduction, especially at these lower prednisolone levels. You get the picture from regularly reading this forum and the wonderfully helpful replies from our regular advisors. Heavy legs and balance issues, with pain, have been an issue for me from about 7 mg, (now down to 5, reducing by 0.5 mg at 6 week intervals, extending to 8 week intervals when necessary. (I am in year 3). Essential to keep moving I believe, my exercise is ballroom dancing three times a week. Good days and bad days of course, so activity levels adjusted accordingly, and for illness etc. two cataract ops, gastro bug, covid. Paracetamol daily and always yielding to intense fatigue periods, with rest and sleep on demand. So keep walking the dog when you feel able and at a level you can manage. My recent rheumy consultation (9 months since previous one) said it can take up two weeks of aches and pains after a reduction, while the adrenals attempt to balance steroid levels, which has given me the encouragement to 'tough it out' for at least a week! Rheumy has included a cortisol test before next consultation in about 6 months time. Good luck to all.
Thanks waltztherapy. I chose the name as felt that Bach’s fugues had a certain similarity to PMR - a lot of repetition in a different guile …..
Love the idea of waltzing around a ballroom !
….
It's interesting what waltztherapy rheumy said. I'm due to see mine in two weeks for the first time in 11 months! I'm still on 1/2mg and he will expect me to be on 0. I reduced from 1mg 2 weeks ago and my legs have felt weak and heavy. Lots of kneeling from weeding has given me tendonitis in my right knee. Getting a GP appointment is hopeless unless you have an hour to stay on hold. But it is slowly getting better. Worse in the morning. I put my 5mg pred tablets out but have resisted taking them. I think I will ask rheumy for some physio. A friend has given me the number of an osteopath, but I'm a little reluctant to go there in case he makes things worse. My balance is shot as well. And yes, I agree, keep moving!
Admirable achievement getting to 1/2 mg pred. Forgot to mention that my rheumy mentioned that my CRP levels are unrecordable, not sure what that means. You mentioned physio, where on the body? I've had some strengtheneing exercises for my weak pronated ankles, with great results, probably helping the heavy legs too. Wondered about the benefit of massage here and for back pain also?Thankyou all.
I was sent for a massage before diagnosis. It didn't help at all, but was very pleasant and relaxing. I was thinking physio for my weak legs.
I think unrecordable refers to the CRP being really low.
Sure. ThxAnd yes I'm a great believer in the benefits of physio. It often works for me.
I have had GCA/PMR for 3 years and my main problem is leg pains. General weary feeling particularly in mornings. Flare ups feel like I have completed a Marathon. Sometimes get sciatic/ electric shock type feelings. I try to walk every day which definitely helps. Spend many winter mornings walking round the kitchen!
HI
I HAD SIMILAR SYMPTOMS AND GP SENT ME FOR BLOOD TESTS AND THEY SHOWED SEVERE VITAMIN D DEFICIENCY - HAVE BEEN ON CAPSULES EVERY DAY FOR THREE WEEKS NOW IN ADDITION TO MY CALCIUM & VIT D AND AM BEGINNING TO FEEL BETTER - LEGS DONT FEEL AS HEAVY AS THEY DID LAST MONTH AND I HAVE A BIT MORE ENERGY .
MY MAIN PROBLEM NOW IS TAKING THE VARIOUS MEDS AT VARYING TIMES OF THE DAY SO IT DOES NOT AFFECT ABSORPTION OF OTHERS 🫣
Hi Bachfugue. I have weak and heavy legs, too, and my balance is iffy. Can't walk the less than 100m on the flat to the co-op without pausing at least once. I also have fibromyalgia, plus GCAPMR. Rheumy appointment earlier today, who checked my hips, knees - mobility good here. Problem appears to be more base of spine. Lifting 3 x 50L compost bags over door step yesterday was unwise, of course. Paracetamol, codeine help. Weather-watchers: don't wish to gloat, but 🌞 in South Wiltshire!
"Lifting 3 x 50L compost bags over door step yesterday was unwise, of course"
It certainly was.
3 bags of 50L -what! 🤦🏻♀️
I have had PMR for 3 years now. Twice I had gotten to 2 mg of prednisone but flared. Yes I have experienced heavy and wobbly legs usuallly around 4 to 3 mgs. When I up the dose for flare to 7.5 it goes away. Hang in there I guess it is the adrenals as others have said
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