pred causing shaking/cramps

[Buchanan16]

I have posted before asking if anyone had suffered from shakiness while on pred and some lovely people replied but in my mums case it seems to be getting worse and im wondering if it is pred or something else.My 85 year old mum started her pred journey 3 months ago on 60mg after losing her sight in her right eye and being diagnosed with GCA. She has been coping really well with all medication she has since been put on and had become so much more mobile which was great. We have worked with our gp and on rheumatologist advice we are now reducing from 30mg to 20mg. I would have preferred to go to 25 first but rheumy was insistent and my mum and dad want to follow her advice as they trust her and up till now my mum had tolerated drops from 60 for 6 weeks to 40 for 2 then 30 (which i stayed on for 4 weeks rather than the 2 suggested as i was going on holiday and doctor didnt want to drop while i was away )and now we are dropping to 20. After this they slow down to 17.5 then 15 etc.

Ive read all advice on here about slower tapering and will try and discuss these again with both gp and rheumy as we continue dropping the dosage down as last thing i want is a flare.

My mum has always been a bit shaky in morn after taking her tabs but this settled down as day went on but last couple of weeks it seems to have gotten worse. At times she can hardly hold a cup and when she is getting dressed her right leg shakes terribly as she tries to lift it to put her trousers on.

She has also started to get cramp in her legs and hand/arm occasionally which is really painful. These things along with fact she has now gotten really puffy around her face/neck in particular are really getting her down especially as she had been doing so good. The shakiness is worse some days rhan others and

Both her and my dad just seem to have gotten it into their heads that quicker she comes down of steroids these symptoms will all stop and while he may be right im trying to explain that mum needs to be on pred because of GCA as there is no other treatment and it could be for a long time to come.

Has anyone else had these side effects starting after being on pred for few months or could it be any of other meds she has been put on along with pred?

I have call with our gp and will try to get app to see him next week with mum as i think my mum and dad always seem better if doctor tells them something and not just me as "im not a doctor" which is true and i would also like his clarification that what im saying is correct. I will also try to call rheumy for her advice as its been couple months since we last saw her.

Apologies for long post but i appreciate all advice given on here from people in same situation as my mum and reading your stories makes me feel better when.i worry that im doing the wrong thing as im not a doctor just a daughter trying to do the best for her mum.

Thank you.

[DorsetLady PMRGCAuk volunteer]

Hi

Sorry to hear about these experiences your mum is having , and yes trembling, cramps and the inevitable moon face can all be side effects of Pred.

However other medication can also induce tremors- so you do need to discuss with doctors - one would expect them to get better better if related to Pred as she reduces, but if they are getting worse then it could be the GCA itself not fully under control. Sometimes very difficult to know what’s causing what…..

Cramps can be helped by magnesium - either supplements, spray or good old fashioned Epsom salts - in a bowl she can put her hands/feet in if she cannot manage a bath.

Moon face and increased puffiness around neck should decrease as she reduces Pred but can be helped by cutting carbs….

[Buchanan16 in reply to DorsetLady]

Thank you Dorsetlady i will definitely discuss with doctor as like you i would have thought they should improve as she is reducing if its steroids not increasing though i do realise 30mg is still a fairly high dose.I also didnt realise that GCA could possibly cause tremors. My mums GCA symtoms were jaw claudication painful ear mouth and then loss of sight she never had the headaches etc. She did have what we now realise could have been PMR symtoms for months beforehand which doctors were treating as long covid.

I will definitely try the magnesium for cramps she was thinking it might be water tablets she is on as they do have tendency to cause cramping though not as bad as its been.

I think because she had seemed to be tolerating all meds so well and altho was bit puffy about her face it wasnt to bad she had hoped she was going to avoid that side effect of pred.

As you say difficult to know what is causing what sometimes as so many tablets can have adverse affects.

She is on 100mg pregabalin twice a day which was for nerve pain we thought was long covid iron tablets twice a day a preventative antibiotic to help avoid urine infections along with the AA calcichew aspirin omeprazole pred for GCA and her bisoprolol and irdersartan BP meds so it is a lot.

I just feel so helpless sometimes and not sure what to do for the best.

i feel if the doctors or rheumatologist tells her its her medication both her and my dad would feel better.. She seems happy enough its just frustrating for her and worrying for my dad who i think is only now coming to terms with fact my mums life has changed so drastically.

[DorsetLady PMRGCAuk volunteer in reply to Buchanan16]

It’s m a small percentage that are affected by tremors -but it is listed as a symptom.., and yes spray magnesium on affected areas -sure packaging will have details of how much/how often etc….

[PMRpro Ambassador]

In terms of the cramps the first thing that springs to mind is magensium - amongst other things, pred depletes magnesium in the body. Most magnesium is found in the cells and the blood scavenges from there to keep the blood level up so testing doesn't show much. It is the first thing GPs say here when people have cramps whether they are on pred or not. So that is worth a try - do be careful with oral magnesium as it has a laxative effect if you take too much and some sorts are worse than others. However, you can use Epsom salts as a footbath or even in the main bath if your mum still manages a bath, there are also sprays and oils you can use topically which work well.

The GP should maybe do a blood test to look if any other things are low/high since pred affects calcium and potassium and they are significant in muscle function too. It could be deconditioning that is leading to the tremor - muscles shake when they are at the limit of their power but as DL says, other drugs may be involved too.

She might tolerate the drop better if you introduce it in 2 steps of 2.5mg - the rheumy doesn't need to know.

[Buchanan16 in reply to PMRpro]

Thank you i will def look into magnesium as you and DorsetLady have suggested maybe trying topical one as i dont want to cause any bowel problems. Would you just spray it onto her arms/legs?She gets bloods done every 2 weeks but they are only checking her crp levels and just tell me they are normal when i call. i will def take notes of these things and discuss this with gp next week.

Thank you.

[PMRpro Ambassador in reply to Buchanan16]

I've never used them - I know others have so maybe ask in another post to get recommendations.

[456again in reply to PMRpro]

I use magnesium lotion on legs for cramps, and Epsom salts in bath.

[PMRpro Ambassador in reply to Buchanan16]

PS, just in case, see my reply to Rachmaniov below

[Buchanan16 in reply to PMRpro]

Thank you

[Giuliana9 in reply to Buchanan16]

For an 85yo lady the GI side effects of Magnesium could be very unpleasant. If she is no longer quick on her feet etc having to rush to the lavatory with cramps or not would be awful. She needs a lot of love and care, which she probably has, but you can never have too much!

[Rachmaninov2]

I have developed shakiness while taking Pred. My Rheumatologist diagnosed Benign Essential Tremor, but didn’t say it might be caused by Pred. I find that it’s worse when I am anxious. Best wishes to you and your mum and dad.

[PMRpro Ambassador in reply to Rachmaninov2]

You - like Buchanan16 - might be interested in this paper

ncbi.nlm.nih.gov/pmc/articl...

where they suggest pred may exaccerbate existing tremor.

Like the patient here, my OH found alcohol improved his tremor though towards the end he could barely hold the glass ...

[Rachmaninov2 in reply to PMRpro]

Thank you, will read.

[papadapadoo in reply to PMRpro]

That's my experience. I had essential tremor before PMR and prednisone, but it is now much more pronounced. However, it is different, in that sometimes, when I have slept very very well, it goes away for awhile.

When I raise my potassium (also depleted by prednisone, I believe), the cramps go away. I use potassium chloride (NuSalt) in place of table salt, and so can enjoy "salting" my food.

[Giuliana9]

Definitely. I have taken it without there being any chance the effects could be something else. The effect of the cramping in the legs was viciously painful and crippling, disabling. Tried a few times with doses of 20, 10 ,5. Going down. Swore I'd never take them again. I have RI and I was trying my partners meds. As one does.

A couple of years later I had very bad chest infections and Pred was prescribed in much larger doses to take for 4 days. I was naturally suspicious but it was a serious infection so I gave it a try. Strangely enough taking much higher dose, 350 a day in two or three lots, it did not cause the hideous cramps. It must've been too busy killing off the inflammation behind the chest infections. How would I know? More to the point does anyone know? This peculiar drug has been round for years but like more and more these days you seriously have to wonder about the quality of any testing and trials done, if any were at all, although the companies will always say their processes are immaculate. You could be forgiven for thinking we are the guinea pigs, the testing is done on the patients.

[Nightingales]

Hello, yes I have tremor. It got so bad I ended up in hospital when I had a UTI. I was referred to a neurologist who did a brain MRI and nerve tests, also checking for Parkinson’s. I was diagnosed with essential tremor. There are various meds for it and I found one that helps. It’s a horrible feeling so you might consider some investigations. It’s not always pred😊

[Francesbarbara in reply to Nightingales]

I have had Essential Tremor since I was 12, so 80 years. It has been worse during the last three years I've been on Pred., but as this condition tends to get worse with age anyway, it is hard to know if I can blame Pred. My mother, uncle and my three children all have Essential Tremor but the children have a better attitude towards it. I was brought up to consider that it was something to be ashamed of, which was no help at all. Yes, alcohol helps but as time goes on you require more and more to give you the same help. I try not to go there.

[Nightingales in reply to Francesbarbara]

Thats awful. I am sorry you went through that as a child.

[perceptual63]

Methylprednisolone gave me the shakes everyday around 4 pm, like clockwork.

It wasn't until I was switched to prednisone that that I was able to acknowledge the difference between the two medication side effects.

[Dydee]

I am 81, diagnosed with PMR in 2020 9 days before coming down with Covid. No shakes at all before Covid then couldn't recognize my signature any more. Took several months for the shakes to mostly calm down while still on 10mg of Prednisone. Perhaps on such high dose shakes are more likely. Perhaps if your parents read real life experiences on this blog they will have a better understanding. It certainly has helped me!