I was on Prednisolone all last year, no side effects I couldn't deal with. Unfortunately had to start again 6 weeks ago, now on 10mg ( 15,12.5) . I feel quite shaky/ trembly especially in my legs. Also hot flushes, mentioned to GP who didn't make anything of it. Does anyone else have this ? Not sure if it's a new side effect Pred, PMR, or something else entirely!
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Many patients complain of similar symptoms - sure they will confirm/advise in due course.
What interests me is
a. the short time you spent on Pred previously - any particular reason? It’s very quick for PMR treatment. I would guess it never went away which is why you are back to the beginning again. Looking at previous posts your treatment seems to have been rather haphazard. and
b. If you’ve only been on Pred for 6 weeks and are already down to 10mg then I fear you are going to reduce too quickly again, and maybe end up in the same situation - being off the medication but still having the disease.
Maybe have a read of this - then you might have a better idea of what you should expect-
healthunlocked.com/pmrgcauk...
Hi, Dorset. I was on Pred for 12 full months, tapering as NICE guidelines, the idea being that all would be peachy by finishing from 1mg to nil. Unfortunately, the pains came back after a couple of weeks if that, and my GP decided to question the original diagnosis, and I was so keen not to have PMR that I accepted his decision not to go back in Pred..anyway I could cope after 5 months and I started again on 15 mg. I am tapering down ( 12.5. A month, 10 mg a month) now on 9mg. Is this too fast?
If you feel okay at 9mg then good! But I would ease off a little from now - either 1mg every 2 months - or 0.5mg at month - same thing but I think if you reduce every month you think you are making more progress! And it’s probably easier on your body.
But whatever you decide, please don’t rush. PMR lasts a lot longer than we, or the doctors would like. Much nearer 4 years than the one year you aimed for last time around.
Listen to your body, and if you get any return of symptoms don’t plough on through - stop tapering and let things settle.
Only about 1 in 5 patients is able to get off pred successfully in a year. The median duration of pred management is 5.9 years and some 40% of patients are still on pred at 10 years, albeit at a low dose.
I felt shaky with PMR, using muscles for sustained or repeated actions caused the shakes. Only decent times on pred doses that allowed really good control of the symptoms improved it.
Like DL - I think you probably haven't got the inflammation under control and could well be heading the same way as first time round. It has been said for some years that patients who get off pred in a year or so are at a much higher risk of relapse. The risk you run is that you get onto a giant rollercoaster of starting pred, reducing, stopping pred, relapsing and starting pred again and over time the pred becomes less effective.
I recognise those side effects. Perhaps they are worse for you because you stopped Prednisalone and then started again. With me they receded when I got to a lower dose. I did go more slowly than you though. 40 months to get to 5 mgs using the dsns method and drops of 1 mg until 10 mgs then 0.5 until 5 mgs ( stuck at 7 mgs for about a year with many failed attempts to reduce.
I had periodically have the "tremblies" in my arms and legs after pred and other drugs, particularly if I get thyroxine timing wrong.
My arms shake violently if I try to something like use garden shears. Anything repetitive.
I notice hot flashes when I am reducing. Then my body seems to sort it out.
Hi,
I get hot flushes day and night especially if I’m anxious try to concentrate or when I’m eating.
I also have the shakes especially in the morning after I take my pred I’ve put it down to the steroid jitters.
Hi. I have both these symptoms and more. I attribute them to pred. The sweating and flushes are many times a day and the shakiness is mostly in hands but can be anywhere. I have GCA and PMR.
And I look remarkably like a hamster!
I have been up and down on them. Now on 15mg a day. And desperate to reduce. Hope you are ok. You are certainly not alone. X
I have GCA and three years on pred. Down to 3.5 mg. I get shakes and head sweats especially in the morning and when the weather is hot. It comes and goes and I have always put it down to the illness and the pred. Not nice, I think keeping well hydrated helps a bit
Hi I have GCA and PMR. Sometimes my hands are shaky and I tend to feel like I’m “ butter fingers” in the kitchen. I also tend to get very hot and flushed in the late afternoon. No idea what caused it !! The condition or the medication!
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