That's the first time I've heard of someone else having the creepy crawly sensation. It was either my second or third night after starting pred that I felt "things" were crawling all over my body, under the skin. At the time I thought, well if this is the worst side effect I can manage it. But in fact it never happened again. Now I speculate it was the anti-inflammatory effect of pred actually doing its good work on all my affected blood vessels.
Actually certain pain meds (heavy duty) they give you after surgery give me the creepy crawly skin feeling, and I hated it so much I just refused all pain meds. Yuch. I do get the hot flashes, especially at night even tho I do a split dose routine. I've wanted to get off my estrogen replacement routine but want to wait till I'm not teaching since the last time I tried to cold turkey that, I would wake up every 25 minutes with hot flashes and had them at exactly every 25 minutes. No REM sleep and soon I was a basket case. Tried all kinds of remedies but that is another story. I think I'll worry more about reducing the pred before I tackle other things. I'm almost to 6.5, yeah! Glad to hear these side affects are normal.
Have you tried bioidentical hormone replacement therapy? If not you really should consider it as an alternative to just estrogen replacement. It is amazing. It will make you feel young again. I tried it for about 2 years and would still be on it today if I had gotten a blood clot and had to get off of it. If you want more information just email me and I'll tell you more about it.
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!!!
Hi Sue - you've had a lot of replies so probably don't need to add in mine.... but yes, shakes and sweats are part of the journey - either PMR symptoms or side effects of the Pred as everyone is saying. I find that when I am most unwell with it all, it all gets worse and I can't just press through. Just trying to get up and ready in the morning has me shaking and sweating..... That's when I try to listen to my body and stop. And I get the insect crawling feeling too! It's a joy! I'm stuck at 16mg and now taking azathioprine for a month to see if I can begin to taper. A horrible cough/cold has now put that on hold..... one day at a time! Keep well! RD
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.