One week later, Pred back up. : Last week, you were... - PMRGCAuk

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One week later, Pred back up.

billinSurbiton
billinSurbiton

Last week, you were all treated to my mini meltdown about what I think was a “flair”. I had tapered down to 26mg from 30, and I guess it was either to quick a drop, or who knows what— but it wasn’t fun. I can’t even remember the details— I think I’m suppressing them as bad memories. I’ll have to re-read my own post to remember.

ANYWAY: I went back up to 30mg right away, so unpleasant were the symptoms. This happened:

NEXT DAY: wonderful! No pain, no wobble, strength back in my arms. I thought: ok- got this tamed— I will just taper much more slowly... meanwhile, I decided to stay at 30 for a few days, just to settle and clear things up.

DAY 2- WHAT?!

Some symptoms return— arms weak, legs wobbly to be fair, I think I had some sort of cold or respiratory bug— or maybe even Allergies.

DAY 3——> Today

Become very dizzy and light-headed when sitting or standing up. This is the biggest thing holding me back. Blood pressure seems OK, that is, i have high BP, but medications keep it in check. I was wondering if it went TOO low, but is just normal.

ANY PHYSICAL EXERTION leaves me gasping for breath, as if I’ve just done a marathon. I’ve had this many times, but I’m concerned that it’s happening even with a good dose of Prednisolone.

SO, I FEEL GREAT— as long as I stay flat in bed. Not optimal. 🤷🏻‍♂️

8 Replies
Hidden
Hidden

Ohhhhhh nooooo! I hate to hear this billinSurbiton!!! I'm so sorry you are experiencing this.. That out of breath feeling is almost as bad as the "Frankenstein Legs!" I'l let the "experts" respond to the question about dosage, but in the meantime rest, rest, rest...

I know it's boring as hell, but many a day I have spent laying on the couch, staring at the wall!!! ... I did feel better for it, the following day!

Sending healing, happy, healthy thoughts!

Hev1964
Hev1964 in reply to Hidden

Hi there :) so you think the breathlessness is caused by Presnor the condition? Just curious as I get that out of breath thing too - walking and talking at the same time isnt an option these days - something I used to excel at! 😄xx

I’m reading online about the connection between this, and/or spinal cord compression, and breathlessness. Look for some information about Spinal Stenosis ... PMR sufferers talk about the breathless symptom. For me, I definitely feel it from the base of my spine, then down my thighs on the outside, then I can’t breath

I would be calling my GP and having a conversation about what is currently happening to you - you could ask for a telephone appointment as it sound as though you could not wait for an appointment.

I read your profile and it said you have PMR. 30mg is a high starting dose for PMR, normally it is 15mg - 20mg. When were you diagnosed?. A 4mg drop is just over the recommended 10% at a time.

Do not put everything down to pred and pmr, other things can and do come along.

You might also like to read this: pmr-gca-northeast.org.uk/as... BSR Guidelines on Diagnosis and Treatment of PMR and you can download it.

This sounds like me on Pred until I got to about 20mg.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

Think you should run past doctor - can you speak to surgery today even if you can’t get a face to face appt. Weekend looming and you don’t want to be worrying about things.

Probably only Pred/PMR related, but always wise to check!

In real terms Bill, it`s normally advised to reduce your doseage by 1 mg per month. Have your B.P. checked by all means. It`s a weird experience this Polymyalgia, all of us have our own up`s and downs. Read a few of the comments on here of members issues, if you experience anything which is out of the ordinary, certainly have an diagnosis.

PMRpro
PMRproAmbassador

You mention a chest infection? Have you seen the doctor? If not - you need to. And to be honest - if you haven't by close of play Friday, don't hesitate to call 111 and ask to speak to the OOH doctor.

Pred gets blamed for a lot of things it didn't do - but it also doesn't stop us succumbing to infections.

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