Shaky and out of balance

[Strippy]

I was diagnosed with PMR last June and started on 15mg pred. by GP. It was upped to 20mg by Rheumatologist and I have been tapering slowly since and now down to 11.25 mg.

I am sure that the severe shaking and out of balance problems I have are caused by the pred and wonder if anyone else has suffered with these side effects?

This is severely effecting my life now - my balance is poor and I cannot walk without aids.

I have been back to GP's several times. Unfortunately I rarely get the same one and at my last visit I saw yet another locum who ordered yet another blood test. The results came back 'normal' and 'no further action'. He didn’t seem to listen to what was causing me the most problem - and despite sending 3 messages to the pharmacy, and asking the Dr for 1mg pred to make tapering easier they are still not on my repeat list - which is why I am on 11.25 as I am cutting 2.5 in half.

Apart from a few aches and pains, and the problematic side effects from pred (high blood pressure) and all the meds I am now taking to protect my body from the pred,(frequent upset stomach) I seem to be getting on with taper well.

I do also have Peripheral Neuropathy - but didn’t start shaking or have difficulty walking until PMR.

I wonder if this shaking and out of balance is a side effect of the pred. and if others experience this - or is it something else?

Many thanks for your advice

[PMRpro Ambassador]

Have you tried taking the pred before bed? Several people HAVE had similar effects after taking their pred and it was solved by taking it before bed so they slept during the worst part.

Pred can cause PN so it may well worsen it if you already have it. PMR's effect on the muscles can also cause poor balance - many of us noticed we could trip over anything after PMR appeared.

[Strippy in reply to PMRpro]

Thank you for all that! It explains a lot.Will try taking the pred at night.

Pity the GP doesn't know all that !

Thank you

[Angelsmummy in reply to Strippy]

A lot of them know bu🤬🤬🤬🤬 all,that is why a lot of us got in this mess!( apologies to the good ones!)🐣😜xx

[Ajr53]

Sorry that you’ve got so much going on and then balance issues to deal with as well. I hope you can get your 1 mg pred but if not some info on pill cutting (I used this successfully when tapering antidepressants as well). I bought a cheap jewellery scale on Amazon (they are about £18 at the moment). They allow very accurate measurements if you don’t mind fiddling after first cutting the original. (I use a small sharp knife/razor blade to trim to the exact size etc.) I then take the small dose in a size 2 gelatin pill capsule. Gives you a bit of control. Takes me 5 minutes to create the dose for the week ahead. Otherwise as Churchill said ‘keep bxxxering on!!!’.

[Strippy in reply to Ajr53]

Thank you Ajr, I'm still pestering the surgery for 1mg pills. But handy to have the info just in case x

[Amabelle in reply to Strippy]

You can buy a little plastic pill cutter from most chemists.

[readingbooks in reply to Amabelle]

Fine as long as the cutter part is a razor blade or similar. Otherwise pills can, and in my experience do, crumble !!

[DorsetLady PMRGCAuk volunteer in reply to readingbooks]

Ah - but some are better than others, and there can be a knack to using one 😀

[Angelsmummy]

Take mine at 2am J ,but I know you like your sleep!xxx🤣🤣🤣🌷😜

[Amabelle]

How jolly to learn PMR can upset balance. I seem to have the full package i.e. treatment for terminal ovarian cancer has given me motor peripheral neuropathy ( brain can't control knee to ankle so walking as if I had cerebral palsy and balance is all over the place). Used to be able to use a walking stick then progressed to four wheeler but because my shoulders are affected can't use that now so nothing to use (started prednisolone at 20 mg two weeks ago and inching better but have to cling to furniture and walls to move). On top of which I have Ehlers Danlos Syndrome (congenital over elasticity of all soft tissues predisposing me to me to longterm spasm everywhere). The latter means I HAVE to walk or my whole body will seize up. Ho,ho. I walk unaided (but close to walls and furniture I can grab) around my flat for 30 laps each day. Takes me 40 mins (reckon fit person could do it in 10 mins.) Anybody got any useful tips?

Or a magic wand.

Am wondering if I should ask GP to increase Pred to get me to the longed for state of no PMR symptoms. Half my stomach was removed due to Ovarian cancer and it showed severe gastritis from med. I 've used for 40 years for EDS and pred also upsets stomach (thankfully well controlled at moment with omeprazole). THere is no cure for the nerve damage (motor peripheral neuropathy) but sometimes it takes years for the nerves to recover and sometimes some patients do not. Perhaps I should ask GP to send me to rheumatologist and neuro specialist and I could bounce between the two.

If you've followed this so far you get a chocolate noddy. If you have any useful comments you get a gold star.

[PMRpro Ambassador in reply to Amabelle]

Blearyeyed may have some tips for you - she has an "interesting" selection of problems including EDH though maybe not as wideranging as yours! I've tagged her so she should see.

But as such a complex patient, I think you NEED some specialist input. Your shoulders should improve and it is possible that a rheumy might be able to suggest something not available to a GP.

Would a forearm rest walking aid work for you?

mobilitypluswheelchairs.co....

There are rollator versions and zimmer-frame versions.

[Amabelle in reply to PMRpro]

2 gold stars! Emma x

[PMRpro Ambassador in reply to Amabelle]

I was hoping for a chocolate noddy ...

[autumnlass in reply to PMRpro]

😃

[Amabelle in reply to PMRpro]

Sorry to disappoint you over choc. Noddy. Yesterday, I ate all the choc Easter eggs in the house and bit the head off the last choc. Noddy in frustration at my lot. Can offer you another gold star - really appreciated your advice. Emma x

[PMRpro Ambassador in reply to Amabelle]

Huh!!! Can't eat a gold star ... 😂

[Angelsmummy in reply to PMRpro]

You could,it would probably be better for you than a chocolate Noddy!x🌷😜

[Angelsmummy in reply to Amabelle]

So cheerful considering what you are going through,put a lot of us to shame.Keep smiling and don’t let up on that humour of yours.Sending you sincere best wishes and look after yourself eh?xxx🌷🌷🌷🌷

[Amabelle in reply to Angelsmummy]

Laughter is the best medicine and I thank God that I can usually hang on to my sense of humour. xx

[Angelsmummy in reply to Amabelle]

You are a trooper,wish you the very best ,Stsy well!xxx🫂🌷😜

[readingbooks in reply to Amabelle]

I've followed you this far and realise you have more to cope with than the best kind of pill cutter as I advised ! Thinking of you.

[JeremyNZ]

Hi.. I know how you feel. On higher doses of prednisone I had lots of shaking and balance problems. I call them the wobbles. They still come and go even though I'm down to 8mg. But they should get somewhat better as you taper. And yes your doctor SHOULD give you lots of 1mg pills to help with the dosage. You can cut them in half for 1/2mg. Btw I take a B12 vitamin each day which has helped my neuropathy issues ( I also take 25mg Nortriptyline at night for this). Don't take B6 too much tho (eg in a multivitamin or Berroca) as this can aggravate peripheral neuropathy. New recommended dose of B6 is now much lower.

[Strippy in reply to JeremyNZ]

Thank you for that.Very heartening to hear it will get better as I taper.

I have B12 injection every 8 weeks as I also have pernicious anaemia. So don't absorb B12 through my stomach.

3 autoimmune diseases 😁

[Purple-Owl]

I definitely have shakey and lack of balance. Have had PMR for 6 years. I once got down to 5mg Prednisolone, but alas I have just completed 3weeks increased to 20mg. I had hoped this would diminish this painful inflammation but it has INCREASED it. I get an intense ache on moving which wanders round my hips, buttocks, shoulders… never know where it will go next. Has anybody any suggestions for help?? I am at my wits’ end.

[DorsetLady PMRGCAuk volunteer in reply to Purple-Owl]

but alas I have just completed 3weeks increased to 20mg. I had hoped this would diminish this painful inflammation but it has INCREASED it

If 3 weeks at 20mg hasn’t helped, then I would query that it’s actually all PMR… have you been checked for fibromyalgia or anything else? You seem to have struggled a lot over the years -have your doctors ever consider it’s not “just” PMR? .. and if not, then why not.

[Purple-Owl in reply to DorsetLady]

Thanks so much for your help Dorset Lady. I suspect you are right, and am off to Google Fibromyalgia and other non PMR causes for these achey shakies.

Could these movement pains also be a side effect of the Prednisolone itself?

PS I am 91, live alone and yesterday suddenly developed an even more intense muscle-ache pain on lifting my left leg to step forward.

[DorsetLady PMRGCAuk volunteer in reply to Purple-Owl]

The problem will being on Pred, especially for a long time is that it weakens your muscles.

[autumnlass in reply to DorsetLady]

😢

[GivenUp24]

I can’t stand the way the rheumatologists treat us!! All blood tests and no information! You should be followed by one specific Dr. But hey as long as they get paid for being a specialist that knows nothing….🤷‍♀️

[Angelsmummy in reply to GivenUp24]

Which is why we are SO lucky that we get as much info. from our forum!Where would most of us be without it eh?I shudder to think where I would have been!😪👏🏼👏🏼👏🏼👏🏼👏🏼👍🌷😜