Hi! So last night I couldn't sleep because I had a bad case of the shakes and I'm still shaking this morning. It's like I'm shivering from being cold except I'm not cold.
I had something similar to this before I started taking the pred, but then I actually was cold, I think it was a mild fever and that was PMR.
This time I'm not cold. I spent all day yesterday resting (okay I used my computer, but all I did was move the mouse and it did seem to aggravate my arm a bit).
The thing is I was planning on starting tapering today. I am currently on 25mg.
So if it's a side effect of pred I'll go ahead with the taper. But if its PMR maybe I shouldn't?
Thanks for your help - once again!
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BoaterAnnie
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When I started on Pred I had really bad shakes which have now gone. My doctor explained that it was the Pred. I also had really bad hallucinations during the night, the only way I coped with it was for my husband and I to see the funny side of things, and my doctor confirmed that it was the steroids. Prednisolone is a powerful drug, yet it appears to be quite aggressive, it’s affects outweigh the side affects and at present it appears to be the most affective treatment. Hope this help.
Thanks for your reply Bird. I'm glad I'm not having hallucinations, that would be really scary!!! I hope this just sorts itself out over the next few days. Right now it seems that even a small amount of activity, like using my computer, is causing it to be worse.
I don't know either....in addition my legs are extremely weak and jittery and I can't figure out if it's PMR ore 2 years of methylprednisolone 4mg. Extremely dizzy.
Kenneth, if you are dizzy I would recommend seeing someone. I was Sharkey, dizzy and fast heart rate part way thru my GCA journey and it turned out I was extremely hyperthyroid. Once I went on medication I was fine. This occurred around 20mg if Pred so made it very challenging to figure out what was what.
It is sounding like this is pretty common and hard to figure out if it is pmr or pred. I would be more concerned about the dizzy part though. Thanks for your reply.
After 2+ years on prednisone, I have been at 4mg for a long time. I have the weak, shaky feelings in my thighs and lower legs, and hands. Seems to be getting worse. Another member's doctor said it's the prednisone, but I did not have these symptoms the first 18 mo. or so when my dose was higher; have been wondering if I should see about increasing my dose.??? Very tricky ; it is a type of neurological problem????
Hi Boater Annie. I think the shakes are likely a side effect of pred. You started on a high dose for PMR. Many of us start on 15mgs. Even at 15mgs I had side effects including palpitations, sweats etc. These started to dissipate at about 10mgs. I have read your previous post re tapering. I have found that pain, symptomatic of returning PMR symptoms, is replicated by steroid withdrawal, so it is indeed quite confusing and difficult to differentiate between the two. So as a general rule I try a taper for about eight days ignoring any returning PMR symptoms for a few days since this is likely to be pred withdrawal. If the pains are still present after seven - eight days then, in my case, it is PMR and I return to the dose I was comfortable at previously. After a few weeks I try again. The general rule of thumb is you only taper up to 10% of the current dose when taking above 10mgs so at 25 mgs a taper should be 2.5mgs, (though some can tolerate 5mgs taper at the higher levels). Everyone is different. However 10mgs and below a slow taper is recommended in 0.5mg steps over longer periods.
I was started on 40mgs, my send rate was very high, and was given Pred straight away. A few days later I had to have antibiotics for bronchitis. On reflection I wonder if this combination caused the scary hallucinations? Anyone had these whilst on Pred?
Okay, thanks for the feedback. It is pretty confusing. I was wondering between pmr and pred, but it sounds like it could also be pred withdrawal, or allergies, or an infection, or menopause. I guess the only thing for me to do at this point is just rest and stick with my current dosage and see if things settle down. I was on a rest day today, but I used my computer for a few hours and it seems worse now.
You have swung up and down through dose changes quite considerably over a very short time.
This could be part of the problem , your body has been under attack from PMR , but your adrenals may have felt equally under siege from the super quick changes on the steroids.
Most of us get our doseage and have time to take it at a higher dose , some may be put through the awful ravages by their white coated torturer of doing a swooping change to help that doctor establish once and for all that it's PMR ( a horrible way to treat people , we're not lab rats!,) but then they are given a stable dose to get used to and to do its work before another set of tapering occurs . The body needs time to adjust to the new medication , and start it's slow repair and recovery before changes are brought in and it gets shook up again.
How long have you been on 25mg?
Did you have side effects when you were at that dose before?
Are you on any other medication?
Do you , or have you had , any other symptoms that you don't think are PMR related but might add answers?
Is there a the possibility of you having caught an infection , or have you had one recently?
These are all important questions to help us give you answers , but also , I would suggest you speak about it to your GP by phone , or go and see a GP at a drop in clinic where you are to get their advice .
It may be the steroids , but equally it may be the PMR or an infection , or your body struggling with all the changes.
Working out which is the key to wether you should tapering.
Keep resting for now , and consider contacting a doctor.
Yesterday I decided to stay at 25mg and have a rest day. I did nothing but watch netflix Today I still feel a little shakey, but it's way better than yesterday. Today is more like little twitches.
Here are answers to your questions:
How long have you been on 25mg?
Okay, here's how it has gone on my second go round. I started at 30 again since that's where I started before. My plan was to taper to 20 fairly quickly and then start the slow taper from there.
30mg 5 days
25mg 4 days
20 mg 2 days - at that point wasn't doing well after photographing the birds so I went back up
25 mg 11 days. Today will be the 12th day at 25mg.
Did you have side effects when you were at that dose before? No, I didn't notice any side effects at all. The shakes that felt like a fever went away when started the pred.
Are you on any other medication? Yes. I take medication for both depression and anxiety. I've been on one for 25 years and the other for 11 years.
Do you , or have you had , any other symptoms that you don't think are PMR related but might add answers? No.
Is there a the possibility of you having caught an infection , or have you had one recently? No, I don't think so anyway.
So I'm still not sure if these shakes are PMR or pred. Maybe I'll stay at 25mg until I've done 14 days and then go to 22.5. I'm thinking drop 2.5 mg every 2 weeks until I get to 15 and then go slower after that.
When I talked to my GP by phone (before the shakes) he just agreed with everything I said. You guys are way more informed and helpful! Drop in clinics are equally not helpful. I went to one before I went home, and they pretty much said they only do urgent care, I needed some investigation by my primary care dr and they couldn't help me. So I ended up going home...
Has your handwriting changed?; gotten smaller?; less legible? Anything like that? Whenever I have to sign something, I think that my signature would never hold up in a court of law. It's not my signature anymore!
Oh wait, yes, there is a symptom! I took my temperature yesterday and it was low. 96.8. That does happen to me when I get sick often my temperature goes down not up. Today it is 97.6 and I'm feeling better, but still a little shakey. So maybe I am fighting off an infection! Hmm... We also had a huge sand storm here and all that blowing dust has bothered me in the past with allergies. Oh my, how is anyone supposed to figure all this out?
Many of us find our ability to regulate temperature seems to have gone awol though I have no idea if it also leads to alterations in body temp as well as feeling cold. Is it possible you are on a combination of medications that is leading to it being more marked?
Well, given that I'm 51 and female, I lost control over body temperature a couple of years ago and that was ongoing before PMR! I didn't feel shakey before though.
I have read, and it does make sense, that a reason for sweats and feeling cold during menopause in women is due to an instability in blood vessel contractions and expansions. Wonder if that reasoning could apply with PMR. ? Also thyroid issues play with perception of body temperature. Hypo people are usually cold; the inverse is also true.
It's really hard to know what's going on when you're going through menopause and have PMR at the same time, like me! I've just accepted that I have no control over body temperature.
I notice it is worst around my neck and decolletage with quite a defined line where it stops - and read somewhere that there is a set of nerve supply to that particular area which stems from the area in the brain that governs body temperature. It would be interesting to know.
Yes , it is hard to tell and you have had alot going on in combination with trying to manage your own drugs without really knowing how to do it.
I know it's a pain but if there is a possibility of a mild infection or allergic reaction going on in there as well as the previous swings in medication you probably need more rest and to see how it goes on the current doseage for a few days.
Sometimes you can have a reaction in tremors and the sweats on your steroids , especially if you have been doing alot , your body is often telling you you need to slow down , even if you think you have.
Sometimes it can from a spike in your hormones or adrenaline .
Are you on antihistamines generally , or had you had chance to take some before the sandstorm?
If you are travelling through various types of country that could have a sudden change in weather or environment that could give you a allergy reaction , you might be wise to take your antihistamines ( ones that don't contradict with your other meds,) every day if you haven't been already.
And just monitor your symptoms on the 20mg now , and try and rest as much as you can for a few days. Then we will be able to advise you from there.
If you have any continued headaches , heart pain or breathlessness it's best to get to an emergency doctor though to be sure it is not allergy related to any of your medication before coming off the drugs or trying to massively reduce them.
I think you're right about more rest and just stick with current dosage. Today is day 12 on 25 mg, so I'll do today and two more days to make it an even 2 weeks and then see if the shakes are gone.
I'm not on any antihistamines right now. I just closed the windows and vents and watched movies all day Yesterday wasn't too bad because the temperature went down, but the day before it was hot and a sand storm, so having the windows closed was a drag but necessary. Maybe even little stressors like that can do it!
Now the sand storm is over and all is calm so I might even sit outside for some fresh air.
I really appreciate all your help Bee! I don't know what I would do without it!
Definitely little stressors , or as we say in the UK , triggers , do that to us all.
You really have to judge the weather each day at home or on your travels to assess if you are going to need more rest stops and more fluids through the day because of heat , cold , storms etc.
If you have been known to have allergic reactions to some environment changes its always best to have some antihistamines with you that work for you and take them just in case in the morning to prevent even a mild allergic reaction bringing on a flare and other symptoms.
And I would suggest as you have had these tremors so recently it may be a good idea to stay at your current dose longer than a few more days until all these symptoms have had time to settle down and your body has had time to repair , recover and restore itself before the next taper. Getting your body balanced right before each taper reduces the impact of withdrawal on your system.
It's like trying to get match fit after a bout of flu.
Lots of fluids , lots of good foods , and get yourself on a good vitamin mineral supplement from the health food store including Vitamins C,E , D , A , K and especially Zinc , Magnesium , Iron as nutrient deficiencies can cause these symptoms too , especially in unusual climates.
An Omega 3 supplement is good for the joint inflammation and Garlic helps . Turmeric is great for the gastric issues .
I’m on 14 mg . Still have days where my hands have a life of their own!! Last week went to fill up bird container with sun flower seeds, hand jerked and spilled a huge quantity of them on ground. Birds appreciated it very much!!
You know I have no idea!! I’d only be guessing if I said but I have been more clumsy since I’ve been on Pred and things just seem to slip out of my hands at times as if I don’t have a very good grip. Sorry that’s probably no help to you at all!!
Lots of people over the years have discussed the amount of broken crockery and glasses - me included and I have stuff I got as engagement/wedding presents well over 45 years ago - I don't drop stuff! But with PMR I dropped more than my aunt did and she could have won gold medals for it! It was a long time on pred before I realised it had improved.
Exactly , I am beginning to out do my husband on breakages ( this makes him very happy , he has so many silver linings going on from my GCA/ PMR! ) but importantly as you say as time goes on and you get better it improves.
I have definitely noticed more difficulty when it comes to writing. When the pen gets close the page I really start to shake! This has made some of my photoshop work a little tricky too since I also use a pen with a tablet for that.
Unfortunately you can have shakes from both , sometimes because you aren't on a high enough dose and your symptoms have got worse.
Sometimes from Fatigue or tiredness after alot of activity showing in a swoop in your energy showing through a lag in your brain and nerves responses to your movement.
Sometimes , from your body trying to adjust its chemistry to the steroids , especially if you are changing dose or are not taking them regularly at the same times causing spikes in other hormones . These adrenal chemical or hormone spikes can cause reactions.
Sometimes it can be because for neither if you are still going through the menopause at the time , under stress or you are having other health issues , like changes in thyroid function.
It's all very complicated . Sometimes you never know which , but the rest works to settle it down.
I have had the shakes a few times already in my "journey". One time I was on one of my higher dosages, 30mg, and I think that time it was from the pred. Another time I tried to reduce too quickly and got the shakes and that time I think it was from the PMR. Right now I seem to have an in-between where I don't have too much pain and not too many shakes (although the shakes are still there - it's not like it's gone). So I guess that's the sweet spot. It's hard to know what is causing it, but I agree that rest seems to be the answer.
I do wonder at times how much of the tremors we are discussing are anxiety related. Once you make a mess with your handwriting, as an example, could it be that it becomes a self-fulffilling prophecy? You expect to write badly, and so you do.???
Many different elements add to the tremors related to PMR/ Medication use.
Anxiety over your condition can increase the level or frequency of these tremors , although this is often not the cause.
Many of us are very conscious of the days before diagnosis when anxiety was used as an easy " go to" explanation for our pain or tremor symptoms.
I find you become conscious of the difference between tremors that are caused or increased by stress or anxiety , and those that you cannot control by relaxation .
Many kinetic tremors as mentioned above , which often come after or during activity, like writing , exercise or housework can occur from the tiredness caused by GCA/PMR and Pred use.
Or , they come from the side effect of muscle weakness caused by the reduced activity with Pred , and the effect on collagen of long term steroid use.
Sometimes it can be caused as an involuntary response from the effects of the illness or medication on our blood pressure and heart rate too. Often confused with anxiety.
There can be a self fulfilling anxiety that we can experience when we notice tremors having an affect on things like our precision , handwriting etc.
We may become conscious that this could happen and it makes us nervous and tremor more.
But just like symptoms like tinnitus , the issue usually starts before the anxiety or consciousness of it .
Using cognitive behaviour techniques can help reduce its impact on you , but the tremors etc themselves won't fully disappear until the physical element of the symptom is solved.
Thanks for your response; Everything you say makes sense; it is erratic; sometimes the tremors are bad enough that I have to stop whatever I am trying to do; other times, handwriting is well controlled. I tried taking a very small dose of valium before I had to write a number of checks recently; no tremors.
Think you are right that symptoms appear before we are aware, but anxiety starts at subconscious level, symptoms come, and when they come, we first become aware.
I think it's good to remember ( not just for us but for Doctors ) that not all Anxiety come from an emotional response to enviroment but more often as a physical response to changes in the body that can be conceived as an attack , or because there is disregulation in the way our nerve receptors respond.
It isn't suprising that Valium works to help your tremors , and thus can be proof that you are controlling nerve receptors involved in pain and muscle relaxation in areas of the body that have or are suffering some form of repeated trauma .
Valium , other name Diazepam , is now consistently used as a first line muscle relaxant and nerve moderator for many sorts of diseases , such as Bowel and Bladder Control , without its use being based on the idea that you are suffering from Mental Anxiety ( although Mental Anxiety does finally occur when your health issues are not under control) .
Because Valium was the drug used for many years solely for its antidepressant qualities , "the Housewife's Choice" as it were , it gained a very negative reputation.
Often, that is not helped by GPs choosing to prescribe it to patients for Anxiety , because they treat people with complex pain issues like they have a condition that is " all in the mind" and only acknowledge the systemic issues long after the illness began when the damage caused becomes more physically obvious , and then more difficult to treat.
Therefore , tremors , palpitations , insomnia , and various other autoimmune , autoinflammatory and dysautonomia features will improve with use of antidepressants that act to regulate your nerve receptors or serotonin levels .
Not because nerve issues are " all in the mind " on an emotional level ( either conscious or subconsciously) but they are involuntary physical dysfunctions that stem from the mind not signalling correctly at a basic physical level with no conscious thought involved at all .
This is why cognitive behaviour exercises work well in combination with drugs .
You are not always learning to control a physical change that is caused by an Emotional response , but repairing the body's ability to control its own levels and production of chemicals involved in all forms of Nervous System Function to regain Healthy Physical Nerve Function.
Giving the physical system conscious systemic Brain Training to remind it of how to function normally as the drugs allow it to relax so the physical system can learn the training.
These sorts of issues often stem from an underlying health condition that shocked your immune system and can have begun from something a simple as an infection , a basic injury or other prolonged physical change , like malnutrition , dehydration and inflammation .
It's Complex , interesting , always " from the mind" but not necessarily "of the mind", and seldom just " in the mind".
It's going to take a lot more than a shakey feeling for me to go to the ER. I'm more likely to catch something worse by hanging around those places! Plus, I don't have diabetes, that would have come up in all my blood work.
You do need to keep an eye on your blood sugar , steroids can cause spikes in high blood sugar because of its effect on your insulin production. But this is usually seen in wobbliness and dizziness usually pre or post meals and the sweats etc. come with these through the day.
A diabetic seizure would not stop but increase , you would know how bad you were feeling and would want to go to ER. Eventually , you would have no say in it , Diabetic seizures aren't temporary 😋
But keeping an eye on your blood sugar and getting it tested regularly at the GP while on steroids is important because you can end up with mild forms of diabetes , diabetes mellitus / Type 2 or become borderline diabetic on these drugs without appropriate diet and management.
Though to be fair, more informative for us is the Hba1c. Single BS levels may miss the random spikes due to the liver releasing glucose into the blood which are not necessarily related to having eaten.
Yes , that true. BoaterAnnie should probably ask for that test as well next time she gets to her regular doctor as she is on the road alot and needs all her assessments done in short time periods and a proper care plan set in place again to make sure she's fit and prepared on her trips. Thanks Brains xxx
Yes; and blood sugar levels fluctuate throughout day based on consumption of food, type of food and when you have last eaten. The Hba1c is the key to a better look at what's going on.
I started on 4.5mg yesterday, but began the tapering at 2omg. At that high level, I was constantly cold, and had periods of the wobblies in my legs and occasionally shaking hands. Last night at 2a.m. woke up for my usual bathroom trip with discomfit in my right ankle (high) and left calf. However, when I got back into bed all of that had diminished a great deal, so will stay on the 4.5 mg and see what happens. I also study my activity and diet when I have return of discomfit/pain. Yesterday, I actually took over 13,000 steps according to the pedometer. Then in the evening celebrated by having a large glass of wine with my daughter. To-day an easy day and no wine, will see what happens. Perhaps you can glean a little information from my experience.
Thanks for your reply. So it sounds like you think the cold and the wobblies is related to the higher dose of pred? Or I guess if you were at the high dose you might have been at the beginning of your treatment too, so it could also have been the PMR. Hmm...
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