Hot flushes and nausea on dropping to 5mg
Posted , 11 users are following.
Having dropped slowly to 5mg a number of months ago, after a week I had to climb up to 8.5 to control bad flare in both hands. Within a month I was back to 5.5mg and fine. After sitting there all over the summer I tried 5mg again 9 days ago and felt fine. But after 5 days I had a terrible flush with sweating and so dizzy I nearly fainted in church. Today I have had another turn which came on suddenly, just the flush and sweating and bit nauseous. I am very busy so nervous if this should happen when out alone or driving.
Has anyone else had this at 5mg? Will have to go back to 5.5 I feel. So annoying after 3.75 years of pmr. Might go for ECG as can't think why the faintness comes on. Annoyed member🙄🤔
0 likes, 25 replies
BettyE diana21296
Posted
I know that there is not always much choice but could it be that you need to be less busy?
I found as I reduced that I had to give myself time to adjust. One of my most uncomfortable side effects were palpitations, not exactly dizziness but a feeling of not being totally in control, slightly panicky.
I know how infuriating these set backs are and it's not easy to control our expectations. It brings out the primary school child's cry of "It's not fair"
Perhaps an ECG would be reassuring.
It took me five years on my second episode but I did and, six years on, remain there.
diana21296 BettyE
Posted
Thanks Betty. I was so pleased to reach 5mg OK with no pain and normal bloods so keep thinking this isn't pmr maybe. I am in the gym and out alot so will try and slow down a bit and see Dr.
EileenH diana21296
Posted
Ask your doctor to check your adrenal function for a start. Then you probably also need at least a 24 hour Holter or preferably the ones that last even longer, over several days or even a couple of weeks - just a plain ECG probably won't show anything unless it happens while you are hooked up and from personal experience - it never does!!!
I have had atrial fibrillation ever since PMR appeared, the autoimmune bit probably caused it - with tachys and bradys (fast heart rate followed by a very slow beat). It crept up a bit - I had reduced the pred dose and suddenly I experienced these occasional waves of lightheadedness and ears ringing. They really were waves and gone in seconds at first. The cardiologist didn't find anything but I had discovered for myself that a slightly higher dose of pred stopped them so that was the answer. She agrees that the vasculitis and the a/f are closely linked. Anyway, over a period of about 18 months it did get worse - it's a long story I won't go into but at the beginning of May they found I was having long pauses causing these episodes and fitted a pacemaker! No problems at all since.
It's probably something completely different but it does need to be checked out. I was just beginning to get concerned about it happening when driving and about to go to the doctor when events overtook that!
diana21296 EileenH
Posted
Thank you Eileen for your advice and will ask for Synacthen test etc. I haven't got palpitations - they disappeared after 12mg but will ask for tests. We leave for Scotland on 6th for 10 days so if it happens again, soon, I will go up to 5.5mg for the holiday. Glad you are doing well now with pace maker.
EileenH diana21296
Posted
Where are you going? Anywhere in particular or "all over"?
diana21296 EileenH
Posted
Driving from Lakes to Killearn 15 miles north of Glasgow and 20 mins from Loch Lomond. Then up to Loch Fyne. Hoping it doesn't rain all the time as we want to appreciate the views!
EileenH diana21296
Posted
We arranged a day trip for people not flying back until Sunday after an international science meeting that finished on Friday morning. Got up and it was dreich to put it mildly - low cloud and mist. They set off on their bus though - and when they came back were ecstatic! It looked just as they imagined Scotland to be ...
Too much Brigadoon methinks!
diana21296 EileenH
Posted
😁
Anhaga EileenH
Posted
Like the first time I was taken to Wales. Relatives took me to a couple of castles, and when driving through the countryside waved vaguely into the mist saying Snowdon was over there, somewhere! Note that I remember that particular expedition nearly 55 years later!
Michdonn Anhaga
Posted
You talk about the luck of the Irish, about 12 years ago my brother and I took a trip all over Ireland including the homestead. The weather was beautiful for 13 of the 14 days we were there. You got have a smile!🙂
EileenH Michdonn
Posted
Many years ago we went to a science meeting in Dublin - on a university campus with parallel sessions so we had to walk outside from lecture hall to lecture hall. And the drug company goodies were umbrellas! Lovely, rectangular ones. We needed them and I still have one!
Anhaga Michdonn
Posted
My stepmother took me on a cruise in the Baltic some years ago. We were told that everywhere we went there had been rain the day before, and got the impression the weather had been pretty bad for a while, We had absolutely stunning weather the entire time, the only rain one evening during three days in St Petersburg.
Michdonn EileenH
Posted
Eileenh, we expect some bad weather so I pack a rain suit, which I use in Rhode Island on the boat. I worn it the one day we went to the Clifts of Moher, it was a wet but beautiful day. 🙂
ptolemy diana21296
Posted
I have been at 5mg and have fainted a couple of times, unfortunately in public places, although at least people knew about it! When standing I feel slightly sick and if I might faint. I get a sort of cold sweat as if I am about to faint. I also feel unbelievable fatigued. I thought it was the adrenal glands. My doctor told me to double my dose to 10mg. I am not sure that was necessarily the right thing to do though.
diana21296 ptolemy
Posted
Oh poor you as that sounds awful. I always avoid standing for too long in public places even before pmr. Did going up to 10mg help your symptoms?
Twopies ptolemy
Posted
and how long will you stay? thanks,
EileenH ptolemy
Posted
Well it won't help the adrenal recovery will it!!!
ptolemy EileenH
Posted
That is exactly what I thought.
ptolemy diana21296
Posted
I was a lot less tired.