Weak, lead like legs, balance off

[arvine]

Well I just came from rheumy appt, Im down to 17 1/2 mgs from 40 like over 2 mos ago, was having sleep issues, and weird light headedness, etc, after coming down to 30,mgs, since then, have had weak legs, feeling like lead, fatigue, although sleeping better, rheumy says probably prednisone causing these symptons? but when I think back to Oct 2016 when first diagnosed with pmr, started on 40 mgs, and tapered long time but got down to 4 mgs, by Nov 2022, had joint pains on and off, but not these weird symptons, so unless it,s my age, now almost 75, don,t understand why im having this lack of energy and weakness Ive been feeling of late, however, now tells me to go to 15 this Friday, stay on that for 2 weeks, then down to 121/2, for 2 weeks, then 10 for 2 weeks, then go slower to taper right down, inflammation markers have come down a lot, just wondering if others out there have had these symptons when tapering every couple weeks from higher dose, still have to go for catscan on neck, re results of MRI, showing subacute stroke, and now on 81 mgs aspirin, as precaution , anyway, will carry on, just not feeling like digging into anything lately,

[piglette]

Sounds like the deathly fatigue might have raised its ugly head. In my case the fatigue was catatonic. I was dizzy and had trouble standing up and needed the odd sit down when cooking something.

[arvine in reply to piglette]

thanks piglette, at least good to know others have had these symptons from reducing a little too fast, appreciate your input

[piglette in reply to arvine]

It is not necessarily because you are reducing too fast but at around 7mg the adrenal glands have to start producing cortisol again as the steroids are not producing enough any more. Quite often the adrenals are none too keen at having to do some work again and react to it. Mine were particularly bad at 5mg. It is a good idea to not reduce for a while until you feel a bit better, as the adrenals only make more fuss.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

arvine is at 17.5mg at the moment, although was lower last November…

[piglette in reply to DorsetLady]

whoops I read it as 7mg. Eyes going as well as brain!!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

no probs- happens to the best of us.. 😉

[SnazzyD]

It doesn’t surprise me at least. Both high doses and withdrawal after reduction made me feel like you describe. I went more slowly than you so your ‘trip’ seems a bit like a white knuckle ride.

[arvine in reply to SnazzyD]

thanksSnazzy, good to know Im not a unique case, hard to get other people to understand how you are feeling and why, but pretty typical reading other ,s comments here, and frustrating when you can,t get energy to do things you use to do, even only mos ago, hopefully when I can taper slower will be able to get back into swing of things

[DorsetLady PMRGCAuk volunteer]

 rheumy says probably prednisone causing these symptons?

Actually more like the fast taper he’s given you to follow….your body has hardly had chance to get used to one dose, when it’s been reduced, and the mat has been whipped away - again.

Hopefully once you get to 10mg are are allowed to reduce more slowly it will be better able to cope.

[arvine in reply to DorsetLady]

thanks Dorsetlady, I will carry on, and hopefully get some energy back when going slower on taper,

[SnazzyD in reply to DorsetLady]

I’ve noticed a good few posts where the person is on low doses or rocketing downwards and the doctor blames the Pred and not withdrawal which is extra illogical when the patient was ok before the lowering/lowered dose.

I also don’t think most have the faintest idea what steroid withdrawal feels like but then not one asked me. The “how are you” never really felt like a sincere request for information about one’s life, just a starter for 2 throat clearer because that’s what you’re supposed to say when one walks in. Then a quick look down so as not to invite a real reply. It would have saved so much worry if one said, “you might feel heinous, you’re not a hypochondriac and likely not dying, sorry and all”. To give them some due, I suspect life as a busy Rhuematologist is a bit overwhelming when most people don’t feel well a lot of the time either because of long standing conditions or the treatment. Don’t want to open that can of worms. Not like surgeons where on the whole people get fixed and there’s a beginning, middle and an end. Rheumatology is more open ended than that but I think it’s false economy to avoid truly understanding the experience of patients. And that my friends is my Tuesday morning stream of consciousness.

[Rachmaninov2 in reply to SnazzyD]

I think there are different ways of asking someone how they are. If I’m asked “how are you”, it feels like a cursory greeting and I feel that I’m expected to answer “fine thank you”. If I’m asked “how are you” it feels like a genuine request to find out how I am. Maybe it’s just me being over sensitive though.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Think you are quite right - and being a Rheumy must be quite disheartening at times - not sure how many get the response from patients “thank you doctor I feel really great” which a lot of surgeons do! Well from me, anyway…🤔

Nor the satisfaction of well repaired /replaced part of the body.

[PMRpro Ambassador in reply to SnazzyD]

Yes, there have been several recently haven't there - and quite, if you felt OK at a higher dose of pred, how on earth can it be said it is "the pred" as opposed to "the lack of pred"?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

If in doubt-“blame the Pred” -nothing much changes 😳

[PMRpro Ambassador in reply to DorsetLady]

It doesn't!

[Grammy80]

Yes, yes and yes! I thought each of my legs weighed 50 pounds but it was really my lack of strength and energy. Dog tired! Don't give up hope; it takes a while. It would help if the taper was slower and your body could adapt....wouldn't be quite so bumpy. My rheumatologist loved DL's plan and believed in a slow taper. You sound pretty spirited, maybe have a chat with the doctor. Listen to your body, it is usually right.💞