Posted , 12 users are following.
Started on 20mg prednisone of 4 days ago
Symptoms started to improve
Yesterday I felt very unwell and on call Doctor told me to reduce to 10 mg still feeling sick, shaky and racing heart and pain back
Do you have to take all prednisone in one go or can you spread it
Does anyone else have these side effects
0 likes, 40 replies
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Daniel1143 robbo123
Posted
Haven't heard of this problem before, but prednisone is a drug with a laundry list of side effects. As to when to take it, all advice is first thing in the morning timed to the body's general release of cortisol. Some folks spread it out, but I am told it lessens the effect.
Mrs_Hobbles robbo123
Posted
Hi robbo123,
Sorry your not feeling to good. I'm no expert but thought I'd throw in some thoughts. Firstly, polymylgia should respond quickly to steroids but it could be the steroids that are affecting you. It seems to me that dropping by 10mg in one go is alot but maybe because you're on it a short time, it may not be that big a deal. You sound like you're reacting to steroids as they can have all those effects on you. From other discussions I've read people do seem to split their doses to morning and evening but generally taking them early in the morning means you'll get some decent sleep at night. The shakes and heavy heartbeat are hard to deal with but are a side effect of steroids and I'm pretty sure should settle after a few days. When my heart beat gets too heavy I drink a glass of water very slowly, taking lots of small swallows rather than big gulps, it calms the heart a bit (a cardiologist agreed with me on that years ago!). Of course if you're feeling anxious about feeling unwell that doesn't help either. I know it's a cliché but if you could otherwise occupy your mind it may make you feel less bad and you need to rest your body too. 10mg isn't a bad dose to be on and hopefully you're system will settle down in a few days. Mind yourself and let us know how you're getting on!
Anhaga Mrs_Hobbles
Posted
I think the majority of people do in fact take their full dose early in the day - some very early, like with yoghurt at 2 am! I think splitting doses is done by people for whom variations in the morning dose time simply isn't adequate, as some people process the pred more rapidly than others and a morning dose doesn't last anywhere near the full 24 hours for them. Do some people split the dose to mitigate unpleasant side effects?
lodgerUK_NE robbo123
Posted
That is massive drop in one go. The rule is normally no more than 10% at a time. and Yes, most people get some side effects.
Read the paper that came with the pred and you will see side effects. Do not worry about them, you won't get them all and they will settle down. It takes time. Rest as much as possible until you get your head around it all. It is unsettling when you are embarking on a journey into a new strange world. It will get better to handle when you know more.
Try and take you pred early, ie if you wake at 6am or 7am, drink a cuppa, eat a peice of toast or jam and bread, take your pred and go back to sleep and let it get to work.
Use the search box, top right hand corner) and put in PMR diagnosis and Treatment. Or on the web, type in PMR GCA Northeast and then on that website read up on the BSR Guidelines of Diagnosis and Treatment. You need to gain knowledge and fast.
These two links will take you to another part of this forum - follow and read up.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
This thread is a fixed one at the top of the list of forum discussions on the "front page" of the PMR/CGA forum - where you can also see every thread there's been. Ever!
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
Mrs_Hobbles robbo123
Posted
Actually just read your symptoms again and I wonder could you have a kidney infection. Only mention it as I got one early on in taking high doses of steroids but put it down to the steroids and didn't know I'd an infection. Maybe go to the doctor tomorrow to get that checked out just to be sure!
ptolemy robbo123
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Anhaga robbo123
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Did you overdo things when you started to feel better? A lot of us start off not knowing (because our doctors don't tell us) that we need to pace ourselves carefully and make sure that for all out activities we schedule in an equal amount of rest. When I started on my pred journey I was, according to my hubby, like the energizer bunny! I didn't know any better. Fortunately I didn't have any bad side effects from overactivity in the early days, but I know a lot of people do.
Do you take your pred early in the day, with food? You should probably stick with that for a while to give thigs a chance to settle, but if after a few weeks it's still bad, many people do split their dose, and they will be along to give you the benefit of their experience.
Hope you feel better soon.
robbo123
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lodgerUK_NE robbo123
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robbo123 lodgerUK_NE
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ptolemy robbo123
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robbo123 ptolemy
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ptolemy robbo123
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FlipDover_Aust robbo123
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The sick, shaky and racing heart etc are 'normal' side effects when you start taking pred, or if you are on higher doses. It WILL settle down. Stick with it. You simply must take the pred or you risk doing permenant damage to your body - including developing GCA and going blind. It's just not worth the risk.
You can split the dose, but it's best if you take it all in one hit as early in the morning as possible. Some people get up in the wee small hours and take theirs so it's working when you get up.
robbo123
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Anhaga robbo123
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Do not take any bone medications until you have your DXA result and have done some extensive research of your own. Pred does not always affect bone density, or at least not seriously, and the bone meds can come with significant side effects. There are natural ways to help maintain bone density even while on pred.
I would say that although there seem to be a lot of doctors who automatically prescribe a bunch of other things to go with pred many of us conclude that pred side effects are enough to deal with and we will manage other possible issues if and when they come up which they nearly always don't.
We could get diabetes from pred, but doctors don't automatically put us on insulin. I think the bone meds should be treated with even more caution.
lodgerUK_NE robbo123
Posted
Your Dexa scan might show you do not need anything at all. Then you have another one next year and see what, if anything has happened. I had GCA and on high doses, started out with 97% and finished with 97% bone density. Not everybody has problems and certainly nobody get all the side effects of pred.
In particular read up on Alendronic Acid - use the search box at the top right hand corner and type it in - and read up on it.