Feeling shaky

[Dumdeedum]

Hi

I was diagnosed with PMR beg Dec 2024. Started on 20 mg Pred. Now down to 15mg & reducing 2.5 mg per mth until 10mg then going to reduce by 1mg per mth if all goes well. Generally well, swimming, in the gym, walking etc & getting on with life. My question is, every so often, perhaps every few weeks, I have a day or two when I feel very shaky, wired & out of sorts. It doesn’t seem to be related to a reduction in Pred dose or how much I’ve been doing. Am I right to assume it’s an effect of the steroids? Your thoughts appreciated. Many thanks.

[Groggrim]

Hello and welcome. I am not qualified to answer your questions but I can say that you have come to a very good place to get some of the best advice. Browse round, join in, you will be made welcome

[Dumdeedum in reply to Groggrim]

Thankyou

[DorsetLady PMRGCAuk volunteer]

May well be the side effects of Pred.. some people are more susceptible than others, but are you really sure it isn’t related to something you’ve done? If might be something you think is insignificant -so maybe keep a diary for a few weeks including food & drink.

[Dumdeedum in reply to DorsetLady]

Good suggestion, thankyou.

[PMRpro Ambassador]

It may not been that you desperately overdid it on one day and it may not be the next days when it is, but several days of slightly more than was maybe good for you can build up and then hits. Or you were all wound up to do something and when it is done and dusted - it hits you that now you can relax.

[Dumdeedum in reply to PMRpro]

Thankyou.

[InTheMoors]

My question is, every so often, perhaps every few weeks, I have a day or two when I feel very shaky, wired & out of sorts. It doesn’t seem to be related to a reduction in Pred dose or how much I’ve been doing.

I was diagnosed last summer and have exactly the same condition. It just hits me for no apparent reason and goes as quickly as it comes. The 'downs' don't seem to be as bad now as they were last year.

[Dumdeedum in reply to InTheMoors]

Very random indeed. Glad your “downs” are improving.

[byebyebicycle]

Hi there, I think you have a pretty ambitious taper schedule. It did not work for me. from 15 to 12.5 was OK but the step from 12.5 to 10 was not good. Tried in 3 times before I found this forum and a proper taper schedule, DorsetLady slow taper. Went back to 13mg/day and tapered 1mg per 5 week cycle. at 10mg I went down to 0.5mg per 5 week cycle. Now I'm on 8.5 and begin taper to 8mg end on next week. So far so good. It's slow but at sure as PMR allows it to get. I usually get a wobble after 2 or 3 weeks into the taper when I think it's going too fast but it disappears and I get through OK. Maybe you are getting something similar ? good luck.

[ChrisBeeLoop]

I think your tapering plan is way too fast. I would say 1mg a month down to 10mg and then tiny amounts each month. Personally I split the tablets into ½ and ¼ mg doses. Steroids do mess with your head causing some people to suffer from angry frustration or depression so it may well be the drugs.

[KTGraham]

not glad that you got the shakes - but glad to see it looks reasonably common. I was diagnosed in Oct 24 and am now at 9mg (my tapering is every 6weeks) I get shaky/flaky days sometimes too; I sometimes even feel like my heart goes out of rhythm for a few seconds. I put it down to the steroids.

[PMRpro Ambassador in reply to KTGraham]

You can't blame everything on the steroids - in fact, my atrial fibrillation is due to the underlying autoimmune cause of the PMR having damaged the electrical cells that govern heart rate. It started the same time as the PMR symptoms and long before pred. If it is very often, get it checked out.

[KTGraham in reply to PMRpro]

Good advise I’ll keep an eye on it. Just come down with a cold and that seems to have woken up the PMR a bit too. Feel stiff and tired today 😳