hi there everyone, so since I wrote here I was on 9 mg of prednisone a day I have managed to get down to 5mgs a day, which right now seems the lowest I can get to, although I will try again in two weeks.
I attempted to get to 4:5mgs and boy my body went mad, on the second day at night I was so dizzy and had the worst strangest headache I had to go to bed with two Panadol extras, a Palexia, and an Ativan as I was spinning out. The next day I went straight back to 5mgs then my shoulders and left arm especially was feeling like I was sailing all the way back to the worst place in the beginning of this saga.
it’s calmed down again with little flares but I really hope I can get down to 2/2:5mgs, I’ve put on weight 6 kilos and this is awful I can’t seem to loose it so I really want to come off it!
I have developed a shaky head when I’m drinking anything and my left arm has a tremor, wondering if anyone else here has heard of this?
My Rheumatologist says it will be a slow journey and I have to add more exercise to loose the weight, so I’ll do everything I’m told, the fatigue is another factor of course so I battle on!
Thank you for listening xxx
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Heidiypi1
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The best option for weight loss on pred is cutting carbs drastically - especially processed foods and added sugar, It also means limiting fruit, especially certain types. Some people need to cut more than others,
But you won't get off pred until your PMR and your body are ready - it cannot be rushed. Pred cures nothing, it is a management strategy to keep symptoms under control to allow a better quality of life in the meantime as long as the underlying cause of the symptoms we call PMR is active.
Now you have got to the stage where your body needs to start producing its own natural steroid, cortisol, again - and that takes time and a VERY slow taper,
Please do not think of reducing your Pred at the moment: your body is telling you that it’s not the right time.
Your rheumatologist seems dismissive of your arm tremor and shakiness. I know very little about this but believe it can be connected to stress/anxiety/fatigue/which would certainly apply in your case. I feel that he should be doing more to reassure you and perhaps refer you to neurology if the symptoms persist.
Any exercise you undertake now should be gentle and measured as you don’t want to stress your tired muscles. I know some people on the forum recommend gentle yoga. Walking is good - short distances to begin with and very gradually increasing time and distance.
Cutting out/down carbs will be of benefit in terms of weight loss with green leafy veg making up a good third of your plate. Blueberries, strawberries, raspberries are great. If you like cakes and pastries these will have to go along with fried foods. You will find info here:
Rest is important as is not fighting fatigue. Be kind to yourself.
Hello, What has been your tapering regime ? I'm using DL's which is the slowest, as previous ones I've hit a hurdle at 5mg. I'm also only reducing by 0.5mg. I tried staying on each mg for month, that didn't work. This one is a lot slower. On Saturday I experienced a lightheaded feeling all day and didn't feel brilliant. However, yesterday that had gone. Hope when I reach 4mg I will be able to have the test to show whether my adrenals have woken up.
Yes, but I suffer from Essential Tremor, but I believe it’s not connected with my PMR, neither is it connected with anxiety/fatigue/stress. It’s more common than I thought (I’d never heard of it). There are videos on uTube which show people with it! I was diagnosed by a consultant neurologist & tried coming off two drugs which I take that can cause it. That didn’t work, but my Doctor is trying one last thing (sadly yet another drug), but talking of me seeing the neurologist again. I think you need to see your doctor, and taje it from there. The first thing was to rule out other diseases, really. Hope this helps! Others may come by who say they have a different type of tremor, I’m not suggesting you have the same thing, just giving you my story!!
I was told by the Consultant Neurologist that my Benign Essential Tremor could be genetic or could be age related. As It happens more when I am carrying out a task that makes me anxious I feel that it could be connected to lack of adrenaline. Not sure, may be completely wrong as I am taking 7mg of prednisolone a day.
Interesting, thanks, I’ve no idea if mine is genetic as no history or knowledge of my fathers family, he was adopted. Mine isn’t linked to anxiety, I’ve been checking to see if its worse when in a more stressful event etc. I’m trialling a drug from my GP atm, & if it doesn’t work, then he said I need to go back to the neurologist! It’s the least of my problems, tbh, We’ve adapted our lives, I don’t dish up meals, carry food or drink (we need a new lounge carpet now, though!) My right hand is not so bad so can carry some one handed food & drink! S x
Thanks so much, will let you know..First trial failed, but now trying with twice the dosage (which I don’t like to do, but will be interesting to see what it does!
Hi HeidiIt is a nightmare trying to get off this med. While on it I was taking Turmic -liquid form as this apparently is very good for our joints. Also I did and still do pilates and yoga to try loosen my body up. I have a massage every week and have it monthly now.
But it is a very slow process hang in there and try to get and keep moving.
I have an essential tremor, and I had it long before I had PMR. One of my grandmothers had the same thing. A beta blocker seems to clear it up. But I don’t really mind having it. If I hold onto something with that hand, the tremor stops. I used to be kind of embarrassed about it, but as I aged, I got so I didn’t care much.
thank you for your replies everyone much appreciated, I’m now down to 3mg trying and failing to get to 2:5mg ! I’m still flaring a bit on 3, but now my knees are getting painful when I’m walking, I’m not even walking properly today I think I’m going sort of bending sideways or limping now!.. must be the flares as the prednisone had covered up arthritic issues for some time but they seem to be worse now! Might have to increase to 3:5 or 4 I guess?..
Unfortunately Pred does cover up OA pain at higher doses, and because i does y may not realise how much, or if, it is deteriorating.
Problem is sometimes when you are at such low doses you cannot be sure if pain is PMR or OA or a mixture of both.
Do you have any other PMR type pains besides the knees? If not perhaps you could try Panadol or topical gel on knees to see if that helps a little - if not then you may need to increase - 4mg is probably a good idea.
I see you are reducing by 0.5mg a time but are you also using one of the slower tapers - might be better once youve got yourself back on track -
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