Diagnosed with GCA July 2021. Started with 60 mg prednisone. I continue to be weak and shaky. I thought it was because of prednisone but I’m now down to 10 mg and I still feel weak and shaky. Is this normal for prednisone
Why am I shaky on prednisone: Diagnosed with GCA... - PMRGCAuk
Why am I shaky on prednisone
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nallufl24
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I would have expected this symptom to improve and lessen as your dose reduced. Have you had tests for things like steroid induced diabetes. Blood pressure abnormalities etc?I think this warrants a GP appointment. You may just be particularly sensitive to steroids. You must have felt awful at 60 mgs.
My sugar and blood pressure are normal. I have been to GP, rheumatologist and a neurologist. No one can explain it.
Far too fast a taper for the body to cope. All the rheumies and GPs want is to get one off steroids asap. Not possible. I'd like to see them do it.
I was far too rapidly reduced as they judged on the immediate effect which was fantastic...so had to increase dose again....waiting for telephone appt later today. This whole experience is an exercise in patience!! Be kind to yourself...meditation? Acupuncture? It is very individualistic, which may explain all these little extra things we all experience.
Hello nallufl24 and welcome 😊
I’m sorry you’ve had such a shock to your health this year, it’s an emotional as well as a physical blow, I think 😟
The shakiness could be due to shock, or to the underlying disease of GCA. The prednisolone unfortunately doesn’t cure the illness, it simply (and thankfully) helps to manage the inflammation it causes. The GCA itself goes its own way until, in its own time, it eventually burns out and you go into remission. This can take anything from a year to quite a few years (some people on here have had it for some time).
One thing that does jump out from your post is how quickly you are reducing your dose. I wonder if it is too quick for you? You could maybe do with at least sticking at your current dose for a good month, then tapering at 0.5mg a month after that? Slow and sure wins the race in the case of this illness.
Have a good look in FAQs for more information and tapering plans.
And do consult your GP or rheumatologist if you still feel uncertain. Follow your own symptoms and listen to your body, always 😊
All the best to you.
Nextoneplease xx
I feel I might be tapering too fast also. Most of my steroid symptoms have gone away but t can’t get rid of my shakiness
Please look at the guidance on tapering in FAQs on here. I am sure it would be helpful to do a structured slow taper.
Totally agree x
Hello there,Are you shakey all the time? Or is it a certain time after taking Pred or a certain time after food for example?
I was sensitive to Pred and it made me weak and shakey to varying degrees right down to 5mg. High doses made me have to lie down for a couple of hours. As has been suggested by SJ it could be your blood pressure or blood sugar. Also, NOP has noted your reduction has been pretty rapid which could be putting you into a permanent state of withdrawal because your body can’t settle. The first year is when you are most likely to flare while your autoimmune activity is probably still high. You were started about 3 months ago. I was still on 25mg at that point and not because I had problems. Have you been told to reduce this fast?
It can be overwhelming and difficult in this first year as one has to learn so much both about the condition and about one’s body because often it’s signals are all you have to go on.
I am shaky all the time during my waking hours. I’m fine when I lay down or sleep. I am on the exact dosing schedule my rheumatologist gave me. I would never deviate without his consent
Have you explained this feeling to your rheumatologist? He may have put you on an ideal schedule from the point of view of steroid withdrawal, but we all react differently. If you aim to feel reasonably well and to have a good quality of life, it may be better to listen to your body and reduce more slowly…..also reducing too fast for you can put you at risk of a flare and you don’t want that…..
I’d really recommend levelling with your rheumatologist and seeing if you can negotiate a slower taper xx
Of course you should but do bear in mind they go by guidelines and the small print that goes with them is that it needs to be tailored to the patient. Everyone is different but they have to start somewhere. Therefore, speaking to the rheumatologist would be a good idea. Another question would be, what are you doing during the day?
DorsetLadyPMRGCAuk volunteer
Hi, Could be a combination of many things,
the medication , but as suggest it should have improved as you reduced,
the illness itself, and
the fast taper.
Personally I would plump for the latter.
Even though your doctors can’t explain it, they should be trying to discover what it is.
In the short term, I would stay at the dose you are on, and see if things settle…your body has gone through a lot in the last few months, give it a chance to adjust.
People do sometimes feel weak and shaky at 10mg normally due to the steroids. Going from 60mg to 10mg in just over three months is quite a fast drop and that can affect you too.
Thank you for all your replies. This is all so new to me and doctors are not always very helpful. I will definitely talk to my rheumatologist again about tapering so fast. It is hard not to get depressed when you haven’t felt good for a long time. I keep trying to keep my hopes up because I know there will be a light at the end of this dark tunnel
Yes there is light at the end of the tunnel…and you will get there, but your way there needs to be a smooth as possible with as good a quality of life as achievable. …and your doctors can make that happen, so you need to discuss with them.
I have found that PMR is life changing so to cheer myself up I now pamper myself. I do the things I want to do and not the things I don’t want to do. I have also found the mantra rest, rest, rest really does refer to PMR.
Sounds like great advice and I'm all for it. I'm using it as an excuse not to do the housework and to eat a little bit of dark chocolate every evening before bed. 😉
I have another question. Autoimmune disease does not run in my family. I started to not feel right about a month after my COVID Vaccine. Of course, I have no idea if that has anything to do with it but I’m afraid to now get a booster. Of course my doctors say I should get the booster vaccine but I’m not so sure. Any thoughts?
Even ppl with allergic reaction to first dose are being told to have next shot. Here only ppl on pred 20 mg or above for at least 2 weeks are eligible for third dose. That should tell you something about how important it is protect yourself if immune compromised. As I have never taken more than 15 mg I am not eligible even though I've been on pred for years. If I were you I'd seize the chance of a booster or third dose. I'd be a lot more afraid of covid than the vaccine.
It's funny you should say that - I too developed PMR about 2 months after my last dose of Astra Zeneca and wondered if it was what brought it on. I personally think that getting the booster is better than getting Covid and it's possible effects. As Heron says, I too would be more afraid of Covid than my PMR!
Have the booster - PMR doesn't have a single trigger, it is an accumulation of stresses on the immune system and eventually something is the straw that breaks the camel's back. It could be the flu jab, the shingles jab, an illness, an accident, Or Covid - there may be a reason Long Covid is very like PMR.
I am now fully vaccinated but after the first jab something strange happened. When asked which arm to inject, I said the left one that is still painful from PMR. Wouldn't make much difference to add more pain.
A couple of days later all pain disappeared. Couldn't believe it.
My rheumatologist said it happens - a reaction to the injection.
Good to hear …on both counts!
Hope you’re keeping okay, despite the restrictions in Auckland……goodbye to pétanque and eating out temporarily?
Petanque, says WorkSafe, is exercise, so club games are on. No travel restriction: Auckland is considered one bubble. As we are strict about distancing, masks are not compulsory. What is though - only double vaccinated can play. What a relief to be out of the house and meet friends.
Eating in more likely, had to endure my cooking. Restrictions easing, though.
First day out at petanque
Good to hear you’re out & about.
Hello nallufl 😊
None of us knows for sure what started our PMR - I could speculate all kinds of things, including stress - but we do know that Covid can make us very ill. So, to answer your question, I’ve had my two jabs and also the third dose or booster - have had no adverse effects that I know of 😊x
Chocolate has no calories when you have PMR!!
😂😂😂
Does chocolate HAVE calories??????????????
Not in my house….
Nor mine…..
Nor mine. Hot chocolate at night. And plenty of Whittaker's within arm's reach!
New Zealand chocolate
Does chocolate HAVE calories?? Noooo. Because piglette told me it doesn't, so it must be true - Right?
Spot on! But only if you have PMR.
So relieved to learn that chocolate doesn’t have calories when you have PMR!
No…GCA as well, and of course if you’re a Viking! 😉
It's a trade off then - in order to enjoy the good, you have to first put up with the bad.🤨
And I learned long ago that broken cookies or crackers, or the first piece cut from freshly baked bread have no calories. They get out through the break.
This is great - it just gets better and better. Now, if someone can convince me that there's no calories in a glass of the hard stuff then I might take up drinking again.😜
That is fantastic news - I am willing to believe. 😉. I also believe in UFOs - because why not? I watch Blaze every day, even the repeats. It's the best excuse I can think of for "resting".
Really?
Hi Nallufl24! I'm not surprised you're shaky. From 60mg down to 10mg in 3 months! that's astonishing! Far too fast. I was shaky when I was on the higher amount of drugs but it got better when I lowered. It's taken me a year to get to 12mg from 60mg (had a couple of flare-ups) so I do wonder if your body is just so confused by the rapid decrease. As for the weakness, I think you'll find that's CFS - which I still get and I believe it's an ongoing symptom of either the disease or the Pred. I really wish you well but chat to your Rheumatologist about taking things a bit slower.
Nobody has suggested a blood test for essential tremor. There is no cure for this either. I cannot remember if I got the shakes before or after gca/pmr. Essential tremor does run in our family, my grandmother had it and an aunty has it. Now me.
There actually is a treatment for essential tremor at a university in the United States. Its shown to be very effective.
Wondering if you have any further info. I am in Australia.
fusfoundation.org/diseases-...
I saw a case where the man could no longer write but this treatment helped immensely.
I don't think pred has ever made me particularly shaky, but I am concerned like the others that you are reducing your dose so quickly. I was diagnosed at the end of July 2017 and started on 60 mg per day. At the end of December 2017 I was having trouble getting below 25 mg. I can't remember when I reduced to 10 mg but it was a while after that. I'm now (4 years + later) at 3.5 mg.
I was diagnosed with GCA early April and put on 40mg. After 3 months I was down to 17.5 for 6 weeks. I am now on 9mg until the end of November. Then 8mg for 2 months. I am on an 8 week schedule. When I started on prednisolone I was weak for about 3 hours after taking it, but that has gone now. Really think your taper is too fast.
I’m no expert and I’m sure different people react differently. However after a bad flair the doc put my up from 3mg to 30mg and I soon became very weak and very shaky and dizzy - could hardly hold cutlery or read a book. Awful. I continued to taper but even at 10mg I was shaky - it’s only now after a few months I am down to 4mg I feel myself again. Hope that gives you hope. Wishing you the best. X
Wow that is a really fast taper!
I was on a superfast taper myself and was all over the place with weird shakiness, muzzy head moodswings etc. I went down from 40 to 17.5 in 5 weeks.
In my case shakiness is associated with withdrawal because I usually get it for a couple of days after reducing.
I started to get mild headaches and scalp aches again at 17.5 and the advice from three consultants (including the one who put me on fast taper) was to slow down the taper - I went from reducing every week/2 weeks to monthly or a bit less.
I think getting down from the high doses to 20 is often done quite quickly but after that it makes sense to listen to what your body says. As consultant Rod Hughes and our own PMRPro say - the body needs time to catch up.
The good news is that you are not reporting classic GCA symptoms, which is terrific.
Have you had your bloods ESR and CRP checked recently so you can see your inflammation position? If not it would be a good idea.
I would suggest you have blooods done and stay on 10 for around a month and see if things settle.
For info I started on 40 in March and am now on 7 which I think is still quite quick. It has not been plain sailing as I am a migraine sufferer and it's difficult to distinguish from GCA but at the moment I feel things are nicely settling and I have the green light to taper more quickly again when I am ready.
On the vaccine - my GCA was diagnosed 5 days after first A/Z - classic raised TAs and sore spots on head and slightly raised bloods. On the second AZ I had PMR-type symptoms but only for around 24 hours. I am going for third primary next week with some trepidation but I am more afraid of covid...
I wonder, are you on any other drugs which might cause the shakiness? Before I was diagnosed I was prescribed diazepam to relax my stiffness. I developed really bad shakes, all over, which stopped when I stopped the diazepam. I've had no shakiness so far on pred.
I am also on Lexapro for depression. I know some antidepressants can cause tremors but I had tremors before I started Lexapro
All been said nallufl24 and agree that taper too fast. I had shakiness for a time and put it down to a fast spasming muscle reaction. It settled eventually. I think it could be the bodies reaction to withdrawal from drug. Who knows?. I'm still at 22.5 and trying to figure out what's happening each day. Hope you feel better soon.
“trying to figure out what's happening each day. “
So true cycli - I hate waking up each morning and having to assess how I feel, what I can do…..here’s hoping we will have increased days of more strength and spontaneity, and fewer of wondering “is this a new headache?” 🤞
All the best to you x
I have reduced much more slowly than you and have had all kinds of weakness, feebleness, trembling, light-headedness and downright embarrassing dimness, including spoonerising my nephew and his bride's names - Will and Frankie (try it!) so it may not be 'normal', but it certainly happens. I have found that the actual shakiness improves with a decreased dose.
Oh the dimness!!! I’m almost too embarrassed to have a conversation. I tend to sit just listening for fear of sounding like an idiot.
I understand. I will start to talk and can’t remember the words I want to use
Sorry to hear , your suffering , my wife 70 had same pattern of , suffering , 4 month back she diagnose never heard disease, GCA ; the life have take u turn , the prednisone 60 mg tapering to 10 mg now and weekly actemra injection ; have created multiple problem, puffy face , unable to stairs climbing , can not watch tv , continue pressure on ear ,eye , body skin have become loose , hair loss , she is fighting with diease , with hope , everything will o.kYou too keep hope every thing will fine after few months ,
My shakiness had to do with my blood sugar. The lower the dose the better it got. Now off pred. for 3 months and I am almost back to normal. I have been diagnosed as steroid induced diabetes. I am controlling this with food.
I've read all the other wonderful comments but would like to add my thoughts.
I became a GCAer in August 2019, started at more than 60 mg but the lowest I ever got was 10mg. Due to a flare in August 2021, I was put back up to 40mg. On October 19,2021, my rheumy had me drop by 10mg down to 30mg a day, along with adding Actemra.
I'm like the last leaf hanging on to a tree in the wind when it comes to shaky!! I had slight tremors (81) but I've been shaking from head to foot...even fell. Today it seems a bit better but it has been 11 days since the drop. We'll see. I would say you have decreased at rocket speed and possibly giving your body time to adjust to small increments may serve you better. THAT IS WHAT I'LL BE TELLING MY RHEUMY. Best to you....💖
Ah bless you Grammy, I know that feeling so well…….“like the last leaf hanging on to a tree in the wind when it comes to shaky!!”
Sorry to hear you fell - hope you’re okay. And hope you feel better soon 🤗xx
I have been shaky on prednisolone for months now and am hoping that going down soon to 10mg a day from 15mg a day will help. I keep walking and swimming to try and maintain my balance but it's hard. I am relieved to find others suffering.Beethovenite.
You are a fighter💖
Sorry to learn about the shakiness: I have been fortunate as I know that is a concern with prednisone, so I am feeling very blessed not to have suffered from that symptom in almost 3 years of pred. Now am tapering (very slow) from 7 to 6. At age85 I may never be off the pred -- what a huge Blessing it was to have the pain leave after 24-30 hours and no pain ever since!!
I took a lot longer for the ESR and CPR to return to a "normal" level than the awful pain to leave. Hang in there -- life will get
better!
Sorry to hear of your issues. I also started at 60 and dropped to quickly causing a flareup. my Rhummy put me back up to 30 after hitting 10 and we slowed down the reduction of Pred. I also was then put on actimra injections to help. this stopped the same symptoms. Of note when i introduce stress into my system i can re trigger the same weakness and shakes. So be careful and stay in touch with your docs.
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