Dizzy spells

[Penguins3]

Morning

Like everyone on here I get all my advice and info from you lovely people. I have had pmr for about 2 years and GCA for 3 .

I have been told to taper down to 5mgs pred by 1 mg every 6-7 weeks, down to 8 now. Pain and stiffness has never gone away and awaiting x-ray results after 6 weeks not available! (they think it might be arthritis).

My question is recently I have had dizzy spells and feel unsteady on my feet, nothing to make me panic or rush to gp but wonder if anyone else has experienced this.

[PMRpro Ambassador]

"(they think it might be arthritis)"

Lets ignore the elephant in the room shall we? At what dose were you still reasonably symptom-free? I would say you need more than 5mg - especially after only 2 years - for the PMR and the other symptoms you are describing could well be due to your adrenal glands not producing a top-up for the lower dose. I do wish they understood a bit more about what happens when you take pred for a long time and then reduce the dose.

[DorsetLady PMRGCAuk volunteer]

Pain and stiffness has never gone away

Do you mean right from the very beginning? If so, why hasn’t anything been done before now?

[Bridge31]

I have them quite frequently. They are unnerving at the time but pass reasonably quickly.

[Paulagcl in reply to Bridge31]

Same here but not sure related to PMR]

[Angelsmummy]

Morning Penguin,I too have dizzy spells as does Kashmiri.Iam on 5 1/2 mg she is lower.I have had BNP and thyroid tests ,all ok apparently.We both think it is something to do with our adrenals but my doc said no to me.Had raised BP on higher dose ,but as I have got lower my BP has dropped.Is it mainly from sitting to standing or when you bend over like mine is?Such a conundrum isn’t it,so many different things these illnesses throw up!X🌼😜

[Pixix]

Yes, but mine is not related (I believe) to PMR. I suffer from hypotension (not to be confused with hypertension!) it’s possible I have POTS. I was diagnosed by taking blood pressure readings while sitting then again when standing up. I get a lot of trouble when bending over, & have to be careful to do some things slowly, or I nearly pass out. This doesn’t mean that you are suffering from either of these things!!!!! But seeing a Dr if your dizzy spells continue, would be a good idea, surely??

[PMRpro Ambassador in reply to Pixix]

Anyone who has dizzy spells needs to get them investigated - as I keep saying, a friend of mine is now quadriplegic after taking a dizzy turn at the top of the stairs and falling down them. The dizzy spell may be over quickly - the consequences may not.

[Pixix in reply to PMRpro]

Quite agree. We are having a rail fitted at top of our stairs, we have to pass the top going from bedroom to toilet, & having a rail there should help prevent that! Mine was easy to diagnose…sadly I’m also suffering from hypertension, so not so easy to treat! S x

[PMRpro Ambassador in reply to Pixix]

A friend developed cerebellar ataxia post-Covid, their landing was just like yours and she stumbled by the bathroom door and fell the full length of the stairs. Couple of stable neck fractures and is recovering but she was lying for about 3 weeks and it's taken a while to get on her feet for more than to go to the loo. They were waiting for completion on a bungalow but it had been delayed - they should have moved before it happened. They have now!

[Pixix in reply to PMRpro]

That’s a sad story. We installed a good, solid rope banister last year, to help stabilise the going downstairs, & now the rail. I get it in waves, really…a good spell, then a bad one. Often get it at same time as vertigo…the two seem to have some cross over. Must go, Covid jabs next! S x