Body twitches: Hi I have PMR and I have started to... - PMRGCAuk

PMRGCAuk

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Body twitches

Wendywo profile image

Hi I have PMR and I have started to experience on my right hand side of body twitching I can actually see it anybody else suffering with this

31 Replies
PMRpro profile image
PMRproAmbassador

Just the odd twitch or episodes of it?

Wendywo profile image
Wendywo in reply to PMRpro

Happens daily when relaxing

PMRpro profile image
PMRproAmbassador in reply to Wendywo

How strange!

You could try magnesium supplements to see if that helps. Have you had your vit D level checked?

This suggests it can happen with pred - but I'd have thought it would be more and all over if it were that. Have you asked the doctor?

healthline.com/health/muscl...

All on one side? Where?

Wendywo profile image
Wendywo in reply to SnazzyD

My arm , back , and foot all on the right side .

Wendywo profile image
Wendywo in reply to Wendywo

I can actually see the twitching

I have had similar visible twitching in my right arm only in last three months or so. Not sure of reason and have not mentioned it to any doctor. Presumed it was a vagary of me!I am 5.5 years into PMR.

I have a twitch in my abdomen, right side. Like bein pregnant!!! Quite strong. No idea what its about!

Seeing my doctor next week . I have a low vitamin D , do you think it could be related?

HeronNS profile image
HeronNS in reply to Wendywo

PMRpro suggests that in her reply above. If it is the cause and the deficiency is enough to cause constant twitches you will need more than the usual amount of D to deal with it. My husband was diagnosed with a D deficiency a few months ago and was prescribed 10,000 units for a short period of time, then told to carry on with the 1000 he's been taking all along - only this time to actually remember to take it! I think in severe cases people even get an injection of a lot more, but the doctor will decide if that's necessary.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Depending on how low - 60,000 IU per week for 8-10 weeks is a common replenishment regimen.

HeronNS profile image
HeronNS in reply to PMRpro

I've just looked it up. He was given 20x10,000 taking 1 tablet every second day.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

As long as it worked ...

HeronNS profile image
HeronNS in reply to PMRpro

I don't know how we'll ever know. The lab only allows one D test a year and the dr didn't even try to send him for a followup. His various symptoms are a moving target. I must ask him if he's noticed any changes since the D supplementation.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I can see the point of limiting them - but not when you need a follow-up to be sure the treatment worked. They wouldn't do it with anything else would they!

HeronNS profile image
HeronNS in reply to PMRpro

I know! It happened a few years ago when Vitamin D testing suddenly became "fashionable". But it's unreasonable to prevent proper monitoring of a known condition. I had a private test the first year because as you know my first reading was too high. Since then I've had a couple more through the public system, both of them trending slightly high so I've halved the supplement (now taking 1/4 what I did when first on pred) but I have no idea now if that's the right dose. A quarterly test would be very helpful and would help me determine exactly what I need to take at different times of year instead of ongoing guesswork. My husband will not be affected so much by sunlight as he has some sort of skin condition which stops him from tanning and means he needs to use sunscreen or have skin covered through the summer. But I agree and I think he should ask the doctor to try to get him the followup test. When my doctor tried for me it was rejected by the lab although my original reading was considered to be getting up to the toxic level. By the time I had the private test I'd taken no extra D except what's in the calcium supplement (quite low) for six months and my level was down to "low normal". Three or four years later I'm still guessing what I need to take.

Bcol profile image
Bcol in reply to PMRpro

I'm probably being remarkable thick here but why do labs restrict vitamin D testing? Surely if a doctor requests a test the lab should carry it out.

PMRpro profile image
PMRproAmbassador in reply to Bcol

The labs don't - the fundholders who pay the reimbursement do. Someone has to pay the costs and a lab left with refusals to cover the costs of IRO £25 for each of dozens/hundreds of tests wouldn't be in business long.

Bcol profile image
Bcol in reply to PMRpro

Apologies for the late thank you for the information, I was tied up with festival (work) stuff yesterday. I hadn't really thought about the funding, I just assumed it came out of the surgery or CFG' s budget. If I'm totally honest I guess I hadn't really thought about it at all but had assumed that if the Doc asked for tests or anything else then it just happened.

PMRpro profile image
PMRproAmbassador in reply to Bcol

When it comes out of their budget it's even worse!!!! It all depends on where you are - in the UK the GP practice itself has a policy for spending money out of their budget, refusing certain testing or medications and there is often a fight between them and secondary care at the hospital about paying for drugs. Then there is tertiary care - highly specialised units in large hospitals - centres of excellence.

Here where I live, some things are paid by the region, other things are funded from Rome. I am on a new generation anticoagulant, about 100 euros a month. It must be signed off annually by the central fundholding system in Rome. I can't stop taking it without risking clots, and that won't change, but we still have to apply every year.

And probably another version where costs are paid by an insurance-based system where the insurer holds the cards - or the pennies.

No apology needed - some people have a life ...

Thank you for replying will update when I’ve seen the doctor

I sometimes twitch in bed at night. I have found that eating a banana just before sleep prevents it. Might be potassium deficiency ?

PMRpro profile image
PMRproAmbassador in reply to Smokeygirl

Bananas are also high in magnesium! And carbohydrate ...

Smokeygirl profile image
Smokeygirl in reply to PMRpro

We can’t win can we!! 🤣🤣🤣

Wendywo profile image
Wendywo in reply to Smokeygirl

Great advice I will try this thank you x

Meggsy profile image
Meggsy in reply to Smokeygirl

I have a banana every morning at 3am when I take my pred. The local farmers market sells very small ones not much longer than my middle finger - just right. I also take magnesium as I was having excruciatingly painful leg cramps.

About two years ago when I had been on pred for three years and was down to 4 mg I started to get uncomfortable twitching, tremor in my hands and visible twitching . My GP could see it in many muscles. He referred me to a neurologist. Before I could see him I got a UTI, which set off uncontrollable twitching, jerking, nystagmus. Horrible. I ended up in A&E. I had a cat scan and MRI and muscle conduction tests. All normal. The neurologist diagnosed essential tremor. He says it’s unrelated to prednisolone or PMR. I have a daily med which helps but it gets worse with stress illness etc. I get internal tremors too. Just another consultant I have collected!

Consider taking calcium citrate.

Wendywo profile image
Wendywo in reply to USAGCA

Thank you will check with GP

Hello Wendywo. I was diagnosed with PMR in December 2019. I was prescribed 15mg Pred slowly tapering, currently coming down to 5.5mg. I also get body ‘twitches’ (good word, I was calling them ‘spasms’ but jerking and twitching are better descriptions). This symptom started about 7-8 months ago; occurs mostly in my trunk and only when I lay down. That is, every night!! It disturbs my sleep and I’m getting very anxious about it. I was under a Physio for back pain (since resolved - for now anyway) and he has referred me to a Neurologist. Telephone appointment 29th June. Happy to report back. Following others’ responses, I take Vit D (2000 iu) and magnesium (1000mg) supplements. Perhaps I should increase doses? Good luck with Doctor’s appointment, Wendywo. And best wishes too, to Nightingales.

Wendywo profile image
Wendywo in reply to Singalong1

Thanks for replying let us all know the outcome of your appointment good luck

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