Is shakiness a side effect of prednisone?

I am on 35m prednisone for PMR and possible GCA, diagnosed over a year ago and tapering again after a big flareup. I can't seem to get any comprehensive, reliable list of side effects and the rheumatologist wasn't really interested - but it's these symptoms which are so miserable: headaches, sweating, constant dizziness, shakiness, muscle weakness, complete loss of taste (apart from sweet, sour, bitter and salt) - and of course weifht gain and fluid retention. Are these all side effects, and will they be likely to disappear as I reduce the prednisone?

There are plenty of VERY comprehensive lists online - there are 82+ so really it covers an awful lot of things!!!

I think they mostly probably ARE due to the pred and yes, they will improve as you reduce - but some people have the problems longer than others (i.e. at lower doses). The sweats can be the PMR/GCA too - I have never had major sweats but still have waves of heat at well under 10mg.

Weight gain and fluid retention you can actively do something about. Many of us have lost weight or avoided weight gain in the first place by cutting carbs drastically. That actually also helps fluid retention to some extent and cutting salt from your diet helps even more. If only doctors would tell patients that at the start!

A few people complain of taste alterations, total loss of taste is unusual but does happen. All you can do for the present is make food more interesting by texture - that is what a friend of mine who has never had a sense of taste due to pituitary problems does. But I think losing your sense of taste is far worse - you remember what food used to be like  

The dizziness, shakiness and weakness can all be due to pred - but also to some extent to the illness. The pred is only managing the inflammation, the actual illness is still chugging away in the background and making you feel as if you had flu on a permanent basis. The impression I get is that that autoimmune part is at its most active in the first 6-12 months but is fading over time so you should feel better in time - which I know probably isn't much consolation at present.

As I said above, some people have found that taking their pred at night (rarely suggested by doctors and actively discouraged by some) meant the worst of their dizziness and shakiness happened while they slept - pred doesn't always keep you awake any worse taken then rather than in the morning. Doctors say pred should be taken in the morning to reduce adrenal suppression. Yes, that applies at short courses of low doses, 15mg and below, but at GCA doses or for the long times we take pred for it makes no difference, the adrenal function will be suppressed. 

Replying to someone recently re taking pred. at night, I know I gave the impression that I took it at midnight. That is not correct; it was around 9.30PM and for me that did solve the shakiness problem. My GP said perhaps I'd sleep through the shakiness. Not sure about that. I did sleep but whether I was shaking in my sleep, I cannot tell.

You are actually not the only person who finds they miss out on noticing the side effects when they take pred at night - and who cares what time you take it if it works!!!

Thank you! That's so helpful. ?It's felt a bit overwhelming.

I think I posted by mistake in reply to another comment - just wanted to say thank you! That's so helpful. It does feel as if I've lost a lot at present, so good to know it's probably not forever !😊

Don't worry - I see ALL replies to a thread   My inquisitive nature - or maybe just nosey!!!

That was such supportive and helpful advice, thank you Eileen! And 3 months on, I'd love a bit more: I'm on methotrexate now, and I've been able to cut down the prednisone from 40 to 15 mg. At 15mg I was feeling great, most of the prednisone side efects gone, able to walk better and no dizziness. I was supposed to be cutting down by 2,5mg a fortnight but had a small flare, so waited another 2 weeks - cut down to 12.5mg 3 days ago and now have aches, fatigue, dizziness and slight nausea again. I don't know whether this is just to be expected as the adjustment to a lower dose (ie I should ride it out) or whether it's another flare and I should go back up to 15 and do a really slow taper. Any advice would be so welcome. I can cope with stiffness and fatigue but dizziness and nausea (which is new) I find really hard to cope with.

I know Eileen will be along, but in case it's already nearly tomorrow where she is and only evening where I am...  it sounds to me like the reduction of 2.5 was too big a jump.  Some people can manage this drop but many of us cannot, and respond more comfortably to a 1 mg taper from 15 mg.  I was able to manage 1 mg fairly frequently to 10 mg (actually once a week, but I guess that's unusual) but once I hit 10 mg I had to adopt a slow taper plan which allowed at first 1 mg per month, the length of each taper gradually increasing as the dose got lower, and I now drop by only .5 at a time, and it seems to take forever to establish on a lower dose, but at 2 or 2.5 mg I'm not too worried and neither is my doctor.  If you had been comfortable at 15  but not at 12.5 you may have pred withdrawal symptoms.  This can be smoothed out by trying 14 instead of 12.5 for a few days and see if you are good on that as you were at 15.  I'm sure Eileen will know whether a return to 15, and for how long, would be best before trying a new taper.  

Thank you, that sounds really sensible and helpful! I think tomorrow (it's evening here now!) I'll try going back to 14 (or possibly even 15) and see how I go, then start the really slow taper after another couple of weeks. Going faster just doesn't seem worth it....

A comparison of reduction regimes would be a useful study not least because people ( medics and patients and, dare I say, politicians? ) of the one size fits all persuasion might be encouraged out of their straight jackets if we could produce a convincing set of graphs.

I think that 2.5mg every 2 weeks is far too fast once you get to this stage. Top experts in tapering have said for some years that no reduction should be more than 10% of the current dose - tapering is different from reducing. If these symptoms are starting as soon as you reduce the dose - same day or next day - then the chances are it IS steroid withdrawal effects, your body protesting at not getting the dose it was expecting. The bigger the drop is relatively speaking the worse these effects are likely to be. And frankly - why should you put up with feeling rubbish for several days if a smaller change reduces the effect? 

As it is, I'd wait a few days more if you can bear it - if it improves like last time you will have got down a good amount. If, on the other hand, it seems to worsen day by day don't wait, go back to 15mg and start over again with 1mg drops. I think Anhaga has covered everything else I'd have said.

If you started with 40mg - was there a suspicion of GCA or do you just have PMR and the doctor dances out of step with most others?

Thank you so much! I must admit, I'm still unclear about the difference between the symptoms of prednisone withdrawal, a flare, or simply tapering below the lowest dose which controls symptoms. I didn't start on 40, - have been up and down for close to 18 months - was on 20 but had a big flareup 4 months ago and so got put up to 40 till my CRP came down below 10. I may have GCA - biopsy negative but that was to be expected since I had been on prednisone for months. I had all the eye tests and have been OK thank goodness.

I cannot function properly with the dizziness so I'm going back up to 15 mg, and will start a 1mg. per fortnight taper in another week. And when I get to 10, I plan to use the slow taper I have read about here.

Thanks so much for the support and advice - it's invaluable.

The biopsy could have been negative even before you were put on pred at any dose - less than half turn out positive for several reasons including the simple fact it isn't affecting the temporal artery - it just happens to be superficial and easy to get at. They even get negative biopsies when the ultrasound scan has shown clear signs of inflammation.

Symptoms rule - OK!!!! 

Yes, I am beginning to get that! But seriously, how do you tell whether symptoms are steroid withdrawal, disease flareup, or just that you've gone below the symptom- control dose? Can you tell? Or is it always a matter of just going back up a bit and trying even more cautiously again after a bit?

When you reduce in small steps, never more than 10% of the current dose and preferably less if you can, you reduce the likelihood of any symptoms being due to steroid withdrawal. By leaving at least 3 weeks, preferably a month, between reductions you give your body time to adjust and decide if it is still enough pred to deal with the inflammation. If pain starts immediately after a reduction and then improves over the following week or so it is steroid withdrawal, if pain starts after a few days and then steadily increases - it is most likely a flare.

If you have gone a bit below the symptom control dose - that is likely to lead to a flare:a flare is just a return of symptoms because the pred dose is no longer sufficient to deal with the new batch of inflammation that occurs each day. It may be because you reduced too far or because the activity of the underlying autoimmune condition has increased, which can happen. The pred has no effect on it - it continues to chug along in the background creating inflammation while the pred mops up the result.

That is so clear and so useful! No-one has put it so clearly for me, so thank you very much Eileen. I feel much better able to manage my own condition now ☺

I’m new to this forum.  Just got diagnosed with GCA 3 months ago.  This information is so helpful! I started at 60 mg and then went Fiebig every 2-3 weeks to 30, where I had a small flare up of symptoms and had to go back to 60 to quiet them. I’m at 50 now.  2 days ago I got the shakes (in my right hand) which 90% went away by the end of the day.  I may still have 5-10% if it remaining.  My right forearm muscles were sore the next day-even  though I didn’t use my arm for anything that should have made it sore.    I actually told my doc that’s thought I needed to taper off more slowly.  I think the 10% reduction rule sounds right. I already told her that once you get to 40 mg the next reduction to 30 is a 25% reduction— which was more than my body could tolerate.  I hope you and everyone else dealing with this gets your symptoms resolved and can get  off this devil/angel prednisone.   I’m wondering if anyone has tried (or heard of) the “Autoimmune Solution” or the “Paleo Approach” diet? A friend of a friend recommended it.

Welcome.

Michdonn uses one of the strict diet approaches but I'm not sure which it is. Whatever it is it has stopped his wife's migraines very successfully and he is reducing steadily.

What we do suggest on all the forums is a low carb way of eating - it really does help with avoiding weight gain with steroids and since sugar is highly pro-inflammatory also probably helps the inflammation too. Low carb isn't as extreme in what you leave out as the diets you mention - some people find some things make them react badly with PMR/GCA but others don't. The nightshades, for example, make no difference to me at all, omitting them just makes my diet more boring! Others find they have a flare if they eat certain things, especially ones they have tried to cut out like bread if they are low carb.

 

Thanks for the response Eileen. I just saw it since apparently the forum responses were going to my spam mail.  I have been on a fairly low carb and very low sugar diet for a while now. I think I’ll cut my carbs down to as close to zero as I can get.  Gluten seems to be a key component to cut out.  I totally agree that being super restrictive (e.g., cutting out nightshade veggies, etc.) may not even help and  definitely will make eating much more boring!

I'm far from convinced about gluten per se. I was eating gluten-free anyway in the early stages of my PMR and it really didn't make much difference - it turned out it was wheat that was my problem and something in the starch structure rather than the gluten. I can eat other wheats without itching (spelt and kamut and even the wheat used for French baked goods in France).

A few people have complained about things ending in spam - maybe a trawl through your settings might help? Do you use Windows10? Their recent upgrades have done some interesting things...  I just look at spam every few days to be sure there is nothing there!

i was initially on 40 mgs of pred , , dr decided to taper me off by 5 mgms per week . I 'm having terrible shakes , dizzy spells . I am now on 20 mgms .

I cant stand much more if this . My legs & arms feel like lead . All i want to do is lay day down .

Wonder if i'm weaning off them to quickly ???

It is too fast. It's possible you don't need as much as 20 mg even, but your body needs time to adapt. Smaller steps over longer time should make it easier. Why are you being weaned off? Do you have PMR? If you have PMR you really aren't aiming for zero, just for the lowest dose which will control the symptoms. Pred isn't a cure, and your doctor should know that. How long were you taking 40 mg and why were you started so high?

I would now stick at 20mg for a few weeks and let your body catch up. 40mg was too high as a starting dose for PMR - not if there was any suspicion of GCA though, then it was a fair dose to start with. For "just" PMR 20mg is almost always enough. So now you are at 20mg - accept this is where you need to start and stay there. You should feel much better in a week or two. Then be sure all your PMR symptoms are controlled before starting a SLOW taper: not more than 2.5mg at a time down to 15mg and not more often than every 3 weeks, preferably 4 weeks.

And then reassess where you have got to.