Update from Confused carer again: Doc on call said... - PMRGCAuk

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Update from Confused carer again

tyga60 profile image
23 Replies

Doc on call said stiffness and pain probably wasn't PMR but could be from a fractured hip and only way to confirm would be to have an x ray( I wasn't convinced) I decided next day to take her to A&E to have her checked out . After 7 hours wait, finally got an x ray. No fracture, thank goodness. Doc was lovely and upped her prednisolone to 5 mg because he thought the stiffness was due to her low dose of pred. We shall see how it goes when we start today.

I am confused that being on steroids weakens muscles and that is why Doctor wants the steroids down but when she is on low dose she loses strength to push herself off the chair. Seems you can't win !

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tyga60 profile image
tyga60
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23 Replies
scats profile image
scats

Glad you got some help eventually. I know that feeling of waiting hours with my mother in A&E, I hope your mother has more patience than mine had!

I love your last sentence, it sums up how I felt at the beginning of this journey.

tyga60 profile image
tyga60 in reply to scats

Luckily she is extremely patient and very stoic!

Wraysbury profile image
Wraysbury in reply to tyga60

That sounds just like my mum was. We spent a Boxing Day at A&E with mum in acute pain from kidneys. But with sandwiches and a flask of coffee she said it was one of the most entertaining days she’d had for ages!!!

Mary63 profile image
Mary63

Just shows we need to be on the dose we need.....to deal with the inflammation. The PAIN involved in getting off a chair to my mind beats any muscle weakness any time.....WHEN the dose is not high enough to deal with the disease. Your poor mum.

tyga60 profile image
tyga60 in reply to Mary63

The thing is, she has never had a lot of pain - only a little pain in shoulders when she walked about for long. No pain getting out of chair - just weakness. I know a lot is to do with her age

Mary63 profile image
Mary63 in reply to tyga60

Your poor mum. And poor you trying to help. Physio? Or Bowen therapy? That helped my mother in law loads when she was in her 90s , battling PMR and weakness.

tyga60 profile image
tyga60 in reply to Mary63

I'll look up Bowen Therapy. I get so worried leaving her. She has had a urine infection too so I've been staying. Trying to work and look after her! May be time to look for help.

Mary63 profile image
Mary63 in reply to tyga60

There is a lot on this site about urine infections in this community. Just put urinary tract infections into search box top right. Sounds like you need to watch out for yourself as well Does she live near to you?

SheffieldJane profile image
SheffieldJane

I wonder if some gentle physiotherapy could help her mobility and weakness? She also suffered a stroke which is part of her symptom picture. She definitely needs an adequate dose of steroids. I felt much weaker with untreated PMR alone. Look after yourself in all this, it’s such a worrying time for you too.

tyga60 profile image
tyga60

Yes I think other problems don't help. The doc at the geriatric unit we visited said she will have legions on brain which add to her problems and she is 88 ! Just want her to have some quality of life.

Ah Bless You Poor Mum 🌺

I hope the 5mg make some improvement for her, sorry l can’t remember has Mum seen a Rheumatologist? It’s difficult to find a balance but if the Pred helps & as Jane says maybe some gentle exercise once the pains under control.

Give her My Good Wishes 🌺 and strength to you to support your Mum 🌺

MrsN

tyga60 profile image
tyga60

She has never seen a rheumatologist. Has seen a physio but just given a set of exercises and walking frames which she never uses!

PMRpro profile image
PMRproAmbassador

Yes steroids can weaken muscles - but it is also possible to provide appropriate rehab exercises to reduce the risk. And if anything causes weak muscles it is being confined to bed because you can't move! My OH doesn't have PMR nor is he on pred but he isn't fit anyway and 10 days in hospital has left him REALLY wobbly.

Just a thought: someone on the forum mentioned creatine as a supplement so I did due diligence and found a research paper that suggested that a short course of a creatine supplement together with resistance exercises can improve function a lot in older patients too - it is well recognised that it works in young and athletic subjects. Perhaps worth trying? I ordered a small tub for OH and he's trying the lower 2g dose over 30 days - can't harm according to the papers I've linked. Even supermarkets have it in the sport section - I ordered his from the pharmacy on the grounds it might be better quality but also because otherwise the tubs are enormous!

ncbi.nlm.nih.gov/pubmed/243...

ncbi.nlm.nih.gov/pubmed/213...

peace_lover profile image
peace_lover in reply to PMRpro

I would be very interested in how your OH does with this, as my OH has a similar problem due to lack of mobility (he is also just bone idle!). 😉

PMRpro profile image
PMRproAmbassador in reply to peace_lover

Twins, separated at birth, by the sounds of things!!!

Just found this:

nutritionexpress.com/articl...

I just googled "benefits of creatine supplementation for older adults" and got a lot of interesting links.

This is usually reliable info:

webmd.com/vitamins/ai/ingre...

and they say that low doses are not a problem for anyone - I wouldn't use the loading doses they quote which I assume the body-builder types would use!

peace_lover profile image
peace_lover in reply to PMRpro

Thank you. Yes definitely twins. Mine is on edoxaban now, keeping a close eye on him!

PMRpro profile image
PMRproAmbassador in reply to peace_lover

Have you seen my post today? What other drugs is he on? Are they compatible?

We were told today that the fact OH was on diliatzem meant he should never have been given the rivaroxaban - it raises the level in the blood immensely increasing the bleeding risk. The consultant, the GP nor the pharmacist noticed.

peace_lover profile image
peace_lover in reply to PMRpro

Yes just read it. I’m going to do a double check later. Have to take Ozzy the cat to the vet now with suspected pancreatitis..... this is already £640 expensive. Think I may need to up the Pred....

PMRpro profile image
PMRproAmbassador in reply to peace_lover

He on statins? Poor Ozzy - not really mocking.

peace_lover profile image
peace_lover in reply to PMRpro

No just penicillin which I have to administer. I’m getting quite good at it, he hates me.... I think he might write a blog later, he needs to vent at the indignity of it all..

PMRpro profile image
PMRproAmbassador in reply to peace_lover

Bless!

tyga60 profile image
tyga60 in reply to PMRpro

My rugby playing / goes to the gym a lot son will probably know about this. He is always buying tubs of things from health food stores. I will ask him. Thanks for this. Is it safe to take with other Meds? She is on various tablets for irregular heart beat and blood thinners. I could ask the pharmacist for advice, or my cousin who works in Boots .She is a font of all knowledge!

PMRpro profile image
PMRproAmbassador in reply to tyga60

He is on a calcium channel blocker for BP and atrial fibrillation and also warfarin (now again, after a nasty experience with a new generation anti-coagulant).

And see the reply just above to peace lover. As I say, I wouldn't use the high doses gym bunnies use but the low level the links suggest seem to be OK with medications.

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