Dizziness

[Sho-Sho]

I have felt dizzy all the time from when I started on 60mg of Prednisolone 10 months ago and still do now when I am now on 16mg. Has anybody else experienced this, not sure whether it's caused by the pred or the Arteritis.

[PMRpro Ambassador]

It shouldn't have been the arteritis - the 60mg dose should have knocked that out. It is a listed and common side effect of corticosteroids.

[shella in reply to PMRpro]

Not a nice feeling - I have reduced to 5 over really long period and up to now have been doing well - like you have this dizziness - new symptom - but as CRP and ESR not raised my own doc doesn't think I should raise steroids ..... not sure if I should ? Any thoughts? Thanks

[shella in reply to shella]

Forgot to mention GCA

[DorsetLady PMRGCAuk volunteer in reply to shella]

Hi Shella,

If the dizziness is new and your bloods haven't reacted then I doubt it's GCA - as PMRPro said to Sho-Sho, but I would also doubt that at 5mg it's the Pred either.

Have you had your blood pressure checked recently?

You don't really want to increase Pred if the problem is not GCA, so think you need to discuss further with GP.

[PMRpro Ambassador in reply to shella]

Lightheadedness and low blood pressure can be part of adrenal insufficiency - I wouldn't reduce any further for a while and see if the dizziness improves.

[shella]

Thanks for that - as I always worry about eyes of course - yes she looked at blood pressure which seemed ok. She thought might be a virus but I am due to collect new glasses this week will ask them to check eyes as they don't feel right so will put my mind at rest. Fingers crossed .....

[AliDeJ in reply to shella]

Ali.De

Hello. I was very concerned about how blurry my eyes were while on 40 mg pred. I thought my eyesight had been affected by my GCA and often wondered if I was ignoring danger signs. My eyes did not seem to work together, too much light admitted and one eye was worse than the other. My GP arranged for a specialist appointment, urgently, as I was worried. It turns out an urgent appointment takes two and a half months!! However, I have since realised that this is a side effect of the preds as it has improved now that I have reduced to 20 mg, and is worst about an hour after taking the medication in the morning and gets better by the evening. I am glad I didn't go for new glasses while on higher preds.

There is still a need to be vigilant, though, as we must not ignore the warning signs of GCA which, I suppose, could flare up as preds reduce?

I am experiencing Tinitus in my affected side and some hearing loss in one ear which makes teaching difficult. I embarrass myself most days by mishearing what children say.I have no idea how long it will take to see the hearing specialist-that was a non-urgent appointment!

[shella]

Thanks for that - I wont reduce as dose pretty low - was wondering whether to up the dose but my own doc doesnt think so .... waiting to hear back from rheumy to see what he thinks - going to check eyes too and try to stop worrying. Easier said than done!

[PMRpro Ambassador in reply to shella]

One top PMR rheumy likes to keep his patients on 5mg for up to 9 months to allow adrenal function to recover well - and the onward journey does seem to be more straightforward as a result.

[camerashy in reply to PMRpro]

Yes my Rheumy wants me down to 5mg I am on 7mg at the moment..although my biggest problem is still the chronic fatigue

[PMRpro Ambassador in reply to camerashy]

Your rheumy MAY want you down to 5mg - but he isn't the boss. PMR calls the shots, or at least, the underlying autoimmune disorder calls them. Unfortunately too many doctors don't get it!

[PMRandRA]

I have occasional dizzies and shakes.

[shella in reply to PMRandRA]

This is first time I have had all the dizzy and blurry spells so seeing optician today.....as you say good to keep an eye on things .... sorry wasn't meant to be funny! Might mean a sort of flare so will up steroids very slightly till I hear back from rheumy. Had to see doc today as tum playing up very badly and learnt that Vasculitis can also affect colon. Oh well something else to worry about! 🤒

[jinasc]

Some of you may remember we did a survey on 'Your Ears'.

If Sho Sho can email [e-mail], heading FAO Sambucca and contact details. It would be helpful.

[Sho-Sho in reply to jinasc]

Thanks, will do that now.

[TomSC]

I have tapered from 60mg down to 20 mg of prednisone. As I have been doing this I noticed dizziness half of the time when I stand up. My cardiologist believes it is a side effect of the prednisone during the tapering. I suggest checking with your doctor to see if he feels the same in your case.

[shella in reply to TomSC]

I have been on low dose -5- for months but possibly means I need to up dose for a while. But def not a nice feeling!

Thanks for sharing ....

[Sho-Sho in reply to TomSC]

Thanks, Tom, will do.

[Sho-Sho in reply to TomSC]

Thanks Tom, will do that.

[camerashy]

HI

IAM DOWN TO 7 MG AND STILL GET DIZZY WHEN I MOVE TOO QUICKLY

[Sho-Sho in reply to camerashy]

Thanks for reply - I have obviously got many months of this ahead of me as I am on 16mg, long way to go!

Wondering about whether to split the dose and take half am and half pm to try and reduce the dizziness.

[PMRpro Ambassador in reply to Sho-Sho]

Perhaps a better way to split might be 2/3 in the morning and the rest at some time later in the day - choosing to time to suit you best. Some people find it interferes with their sleep if taken too late in the day. However, one lady who suffered dizziness took her pred immediately before bed, the dizziness happened overnight!

But it all depends on the cause of the dizziness - and as we age the possibility of orthostatic hypotension increases - low BP when you stand up. The answer there is to stand up more slowly.

[Sho-Sho in reply to PMRpro]

I am seeing my Rheumatologist this week and will ask her about your suggestion. Thanks