Steroids and Essential Tremor: I have had Essential... - PMRGCAuk

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Steroids and Essential Tremor

Francesbarbara profile image
14 Replies

I have had Essential Tremor since I was 12 (am now 78) I have just started on steroids for possible Ploymyalgia. Does anyone know if this medication tends to make the tremor worse as that has certainly been the case with me in the last three days?

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Francesbarbara profile image
Francesbarbara
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14 Replies
HeronNS profile image
HeronNS

I think it can, one of the long list of possible side effects. Fortunately none of us get them all! Hopefully, as your dose tapers, it will lessen again. And I was just reading that reducing stress can help as well, so maybe as you settle into your "new normal" and the pred helps you feel better, stress levels will diminish.

Phoenix51 profile image
Phoenix51

Hello. I have essential tremor too. I have been on prednisolone since end of January and my tremor has been noticeably worse. I mentioned this to GP and neurologist and they both said it would be the prednisolone. Apparently this reduces on lower doses.

Francesbarbara profile image
Francesbarbara in reply toPhoenix51

Thank you too and I am not surprised at your response - very helpful.

PMRpro profile image
PMRproAmbassador

Some people do complain of tremor, especially in the eearly days or at higher doses. and it is a listed adverse effect.

What dose are you on and for how long so far? My husband was on high dose pred for a week or so recently and it didn't seem to make his essential tremor any worse.

Francesbarbara profile image
Francesbarbara in reply toPMRpro

I am on 20mg per day and this is just day 4 . I should say that my Essential tremor is normally pretty bad anyway but has just gone up a gear.

The suggestion is for a week at 20, a week at 15, a week at 10 then 5 and zero. Sounds quite a rapid reduction to me although like everyone I'll be dying to reduce, but at the right time.

PMRpro profile image
PMRproAmbassador in reply toFrancesbarbara

That is NOT the sort of taper to use in PMR - it is a chronic disorder, a short blast of pred will achieve nothing, once you stop the pred the symptoms are likely to return, and in my case it felt worse than before though that might have been the contrast with 6 weeks of pred that worked even at 5mg - it never did again. If the doctor is using it as a diagnostic tool it is OTT - after a week at 20mg it could be stopped to see if the symptoms improved quickly on pred and return in the same time frame without. But otherwise - what they are doing is pointless.

PMR lasts years, not weeks, and is due to a longterm autoimmune disorder that created inflammation which is the underlying cause of the symptoms. The pred combats the inflammation. You start at a moderate dose, 15-20mg is common, and then taper SLOWLY and in small steps to find the lowest effective dose for you personally. 2.5mg at a time, monthly, is common down to 10mg and many people manage that although many struggle after 15mg. No reduction in such a taper should be more than 10% of the current dose. The reduction you have had suggested is the sort used for pred in acute situations, such as a chest infection.

I would suggest your doctor has no idea at all about PMR and didn't bother to look it up. This is a paper written to assist GPs to manage PMR better without constant recourse to a rheumatologist:

rcpe.ac.uk/sites/default/fi...

It isn't difficult to read but is aimed at GPs so both you and your doctor should appreciate it. It provides a far more reasonable approach to tapering the dose but it too is based on the assumption that PMR lasts 18-24 months. It doesn't - half of patients require steroids for more than 6 years. Only 1 in 5 are able to get off pred in under a year, 1/3 are off in 2 years. This isn't a short term illness:

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are two articles about work showing what is more likely to be the real duration of PMR but with slightly difference information in them. There is a link to the original work at the end of each article.

In your place I would present them to my doctor as soon as possible and ask them to read and consider them and explain their chosen approach to you.

I think it is likely that the tremor may improve with time as your body gets more used to pred and the dose falls. But for the moment - this reduction plan needs looking at.

Francesbarbara profile image
Francesbarbara in reply toPMRpro

This is tricky for me, as you'll appreciate, as the reduction dose has come from my consultant, not the GP. I know he is undecided as to whether I have Polymyalgia or Acute Rheumatoid Arthritis and I was given an intra-muscular injection of a slow release steroid at first which had no effect. Then he prescribed the Pred. I would like to know his rationale behind his thinking and feel I must make an attempt to talk with him on telephone.

PMRpro profile image
PMRproAmbassador in reply toFrancesbarbara

Ah - in that case he MAY be using the pred as a diagnostic tool - as described in the paper I linked to.

What happened to your symptoms when you started oral pred?

Francesbarbara profile image
Francesbarbara in reply toPMRpro

The original pain in my wrist improved only very slightly. All other pains in shoulder, arms, hips etc have improved quite dramatically. I have always maintained there are two things going on here, the wrist being an acute tenosynovitis (consultant agreed with that). All other pains suddenly appeared a month later and the Pred has had good effect on them. May be a case of tricky differential diagnosis.. Am talking with GP tomorrow to go over the consultant's report, so that may shed more light on things. Thank you for taking time to write to me.

PMRpro profile image
PMRproAmbassador in reply toFrancesbarbara

I had hand/wrist and foot pain as well as trochanteric bursitis with PMR - the immediate improvement I had was in everything else but the tenosynovitis in hands and wrists and hip bursitis. They took 3 or 4 months to go and are not unusual in PMR. It may be that the tenosynovitis is part of the PMR, it was for me.

Do you also have pitting oedema of the hands and/or feet?

Francesbarbara profile image
Francesbarbara in reply toPMRpro

Very interesting final point and I have read of the connection before. I have never had any pain in feet at all and excellent range of movement (did ballet for 25 yrs). No pitting oedema anywhere.

sara44 profile image
sara44 in reply toFrancesbarbara

That is a very fast taper iusually tape at 1% or .5 to 1 mgand find that even at one that was a little bit too much and had to go back your tapering may result in a flare of your symptoms which you definitely do not want to try 1% tapering it will be beneficial and keep you in safe numbers without a Flare

Francesbarbara profile image
Francesbarbara in reply tosara44

It seems that the consultant is using this as a sort of 'test' dose and that is why the reduction is so quick. He is not convinced it is Polymyalgia - thinking more in lines of Rheumatoid Arthritis.

Rimmy profile image
Rimmy

A with others here I have had an essential tremor since I was about 30 of my 68 years and since I began taking Pred over three years ago it has been worse. I am not at my lowest dose so hard to say if it has improved as yet - it seems to come and go !

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