Hi - has anyone experienced dizzy spells when reducing pred to a low dose please? Currently trying to get to 1.5 from 2mg. I am having pain as I usually do when reducing but last night I had many unpleasant dizzy spells turning over in bed and tried a yoga class this morning and it started again, not sure if it’s related or not?
Many thanks x
could be a few things -
1. adrenals not fully functioning as yet, that can cause dizziness, just watch out for other issues - nausea etc.
2. labyrinthitis/vertigo - my labyrinthitis started overnight, but it's usually more severe than you describe,
3. another type of virus that can affect your inner ear which causes dizziness.
Just go a bit careful for a day or two, trying to keep you head as still as possible in an upright position, especially when rising from a chair or turning head. Also maybe look for vertigo exercised online.
Obviously if it gets worse you may need to seek further advice.
Thank you. It does come with instant nausea, I’m thinking I may have dropped too fast, been trying to break up the 1mg tablets into 1/4 but not very successfully. X
Are you using a slower tapering plan? if not - this is just one version -healthunlocked.com/pmrgcauk...
Might be worth just staying a 2mg for a little while longer - it such a small dose anyway.
I have been using your DSNS to taper for the past 2 1/2 years. I had to go up from 1mg to 2.5mg recently when a virus caused a flare, GP said it would be ok to drop back to 1mg quite quickly so I did 2mgs for 3 weeks and for the past week 1.5mg, I will go back to 2mgs a hope it works 🤞🏻 Thanks so much for your reply x
Personally I wouldn't be in any rush...I know its nice to get to zero, but times are stressful - for all sorts of reasons at the moment, so your body - and illness - need all the help they can get.
If it were me I'd accept the 2mg gratefully and slow down even further! As DL says, too much stress around at present so you might as well feel as well as you can at this level. Prof Dasgupta says he keeps patients at 2-3mg long term as it reduces the risk of relapse/flares.
Thank you, yes I know you’re right. I don’t know why I feel so desperate to be off pred, I suppose the worry of catching COVID doesn’t help.
But getting off the pred isn't going to help - the history leading to adrenal insufficiency remains the same and if you did get Covid they would up the pred dose to help you cope. That applies for up to a year after stopping pred - and I sincerely hope things are looking better in a year!!!
Well, that's a coincidence! I'd never heard of labyrinthitis before until about six weeks ago, when a very good friend of ours in the village was diagnosed with it.He was really poorly, including throwing up when they were trying to give him a scan; not much fun.
Anyway, he is on the road to recovery now, albeit still on medication, and having to be very careful when he gets up.
And now I learn that you've been dealt with this unpleasant affliction. I am sorry, and hope you've managed to get over it now.
With regards
Paddy
Had it long before GCA - whilst I was still at work - about 15 years ago. Wiped me out for a few weeks - had to crawl to bathroom, couldn’t stand- and took about 6 months to get rid of the occasional vertigo attack when I forgot about keeping my head in a certain position.
Okay driving to work when I was concentrating on how I moved it- but then when I got out of car and dived in the rear to get briefcase - wham! Duh!
Fine now thanks 🌸
Wow, that was nasty! Our friend is still struggling after two months.Thanks for the information.
Paddy
This is what GP gave me at the time -,might help your friend -
dizziness-and-balance.com/t...
Or this - healthline.com/health/fitne...
Thank you for the links - I'll pass them on to him.Paddy
Movement causing dizziness and instant nausea sounds like inner ear issues for any of the reasons above or others. It’s worth a chat to the doc because there are effective medications to take for it if becomes a misery. Take care on stairs because it can hit quite suddenly feeling like the world has just lurched.
Hi. I am really interested in any ideas that others may have, as I had this too, and it was put down to an autoimmune reaction affecting my inner ears. Dreadful vertigo at times, but mostly this sounds exactly like yours. I was checked out for labyrinthitis and Benign Paroxysmal Positional Vertigo and it was neither of these. One of my theories was that I had been taking 1mg Pred and then had to go onto a short course of high dose Pred for two weeks (60mg down to 5mg). I then reverted to 1mg and I think my adrenals were having trouble catching up. So DL’s theory could well be right in that that your adrenals may not be functioning properly.
I do feel for you - it’s a horrid thing. But the good news is that mine went away over a few weeks.
Worth checking it out with the docs though as it can obviously be a number of different things.
Thank you, yes I wondered if it was my adrenals. I feel really rubbish today but hoping the increased pred will help. Dread calling the docs at the moment - they’re so busy and stressed 😥
Yes they are busy, but normal “things” are still happening and need attention.
I've had dizzy spells most of the time but I started on 20mg and am only down to 17.5 so I can't say about low doses. It could just be vertigo which I suffer with so give it a couple of days and if it's still there your Dr can give you tablets to help. Hope it clears up.
Thank you, I will call them if it doesn’t settle as our stairs are steep in our cottage and I don’t fancy falling down them 😬
I experienced the same recently when I reduced from 10mg to 8 mg. Felt dizzy and a bit wonky. I have a very sensitive vestibular system and have experienced vertigo a couple times in the past ( pre PMR ). Once I went back up to 10 and stayed for a week I felt back to my new normal and have not experienced any more dizziness.
Bottom line is who knows if it was related but I suspect it was for me.
Thank you - that is reassuring as I haven’t had this before. I don’t like to assume everything is due to pred/PMR but good to know others experiences.
I have had dizzy spells since I got to 5mg. I thought it was the adrenals complaining. I found even standing up making breakfast I would have to sit down in the middle. While having a hip replacement in September I fainted three times and managed to dislocate my new hip in the process. I was given adrenaline, hydrocortisone and two pints of blood. Also an electrocardiogram. I was stuck in hospital for nine days while they tested me day and night. I asked to be let out in the end. They contacted my GP and I am having a 48 hour monitor in February and also seeing a consultant. I am pretty sure they will find nothing and the hospital is miles away.
Gosh you poor thing, what a nightmare and to still not have a diagnosis! Did they test your adrenal function too?
No, they did not listen to what I was saying, they had homed in on the heart. The echocardiagram consultant who brought in a fancy machine to test me said my heart was perfect! They said that was not the whole story so are carrying on on the heart theory.
Sometimes they get fixed on a path which means the eventual diagnosis and treatment is so delayed. Sending love and hoping you get a diagnosis ASAP x
I tend to have very high CRP and ESR (over 100) every so often and they launched into tests for cancer, I was scared stiff. They then got bored and stopped.
I was very interested to read your write up, I have just reduced my Pred in the last few days down to 3mg now and have experienced exactly the same experience as you have which I will agree isn’t very pleasant, how many days did it last for? I don’t really want to go back on a higher dose.
Sorry to hear you have this too! Mine started the night before last and still continues. I’ve increased my pred back up to 2mg from 1.5mg in the hope it helps but will seek GP advice if not any better tomorrow 🤞🏻
Mine also started a couple of days ago, good luck with the Gp I did phone yesterday for advice and the only appointment I could get for on line consultation was next Thursday, I will say it doesn’t feel so bad to day so fingers crossed it will go on it’s own.
I had vertigo/dizziness over the years & then tinnitus. years ago & after seeing an audiologist for the tinnitus discovered it was connected. Since then I have taken betahistine everyday & was thinking of stopping it as I rarely get tinnitus now. However, in May I had a short spell of dizziness & then a month ago a bad spell of labryinthitis on waking which lasted several days but improved on taking prochlorperzine which was prescribed to take at the onset of an attack & I try& sleep it off initially. I happen to be seeing my rheumatologist this week & was going to mention it. As am on a low dose of pred (4 to 3.5) too. If I can glean any useful info I’ll let you know.
Thank you, that’s interesting - glad you’re OK and good luck with the rheumatologist appointment- would love to hear their thoughts. X
I’m just about over a four week bout of vertigo. Never had it before. It started in the night when I turned over. Quite appalling. Doctor prescribed tablets which helped stem the vomiting. If I bend over too far or stretch too far I still keel over but the room no longer spins! I didn’t see any connection with this to my pred reduction, which was from 6 to 5 at that time, but would be interested to know if there’s a connection, of course! Hope not, though! Good luck,
Thank you - That sounds exactly how mine started, I have increased my pred but so far the dizziness and nausea continues, but hoping it calms down over the next few days 🤞🏻
I increased from 5 to 7 for 2 weeks whilst the worst of the vertigo was around (plus it was Christmas, extra ‘things’ to do)!! I’m back to 5 now, just two days so far, but seems OK. I’d be interested if vertigo is connected to PMR in some way, but seems unlikely to me! Good luck, hope it goes sooooon!
I certainly had groggy spells - my husband would say I appeared completely ‘out of it’. Usually happened if I was too active too quickly in the mornings. A sit down and a glass of water usually did the trick and it did pass for me. Best wishes
As promised, I had my appointment with the rheumatologist this morning, though it was with an SHO. Regarding dizziness/labyrinthitis symptoms she felt it was a question for the endocrinologist, so I'm afraid I can't help!
And how many of her patients have an endo?
Exactly, but as she was not a specialist ~i didn't press the point! She was very keen to refer me to my endo (who I have seen only once 18months ago) for a discussion on current symptoms related or not to adrenal insufficiency.
But why the endo in particular - and not ENT???? And they are symptoms she might meet in a GCA patient.
Thanks for trying 😊
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