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Author Topic: Polymyalgia  (Read 3611 times)

CrispyChick

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Re: Polymyalgia
« Reply #15 on: January 08, 2022, 06:05:38 PM »

Yes, my dad was in a terrible way by the time it was spotted. Lethargic, no appetite, mild fevers. As well as the pain.

He got his life back the week after starting steroids. He's got a long road ahead, but at least he's feeling normal again.
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CLKD

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Re: Polymyalgia
« Reply #16 on: January 08, 2022, 08:07:32 PM »

That's good news.
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Pennyfarthing

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Re: Polymyalgia
« Reply #17 on: January 12, 2022, 04:00:01 PM »

Should find out tomorrow.  Looked on my Patient Access notes last night for blood test results and 3 of them say abnormal. 
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CLKD

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Re: Polymyalgia
« Reply #18 on: January 12, 2022, 04:36:39 PM »

That's why I don't agree with being able to access personal records.  Any result should be discussed face2face with a GP.  Let us know how you get on.
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Pennyfarthing

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Re: Polymyalgia
« Reply #19 on: January 12, 2022, 07:41:41 PM »

That's why I don't agree with being able to access personal records.  Any result should be discussed face2face with a GP.  Let us know how you get on.

They will be …. That’s what my appointment with GP is for tomorrow.😉
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CrispyChick

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Re: Polymyalgia
« Reply #20 on: January 12, 2022, 08:40:54 PM »

Good luck!!! My dad was back at gp today for yet more bloods.

He's feeling really good. Still on 15mg steroids, but no side affects!!! She's talking about starting to reduce. Calling him next week.

At least if you know you have it, treatment can make you better xx
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Pennyfarthing

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Re: Polymyalgia
« Reply #21 on: January 13, 2022, 04:08:59 PM »

Although 3 of my blood tests came back as abnormal the GP says they are nothing to worry about. He says there is no specific test for polymyalgia but if you go on steroids and you start feeling better within just a few days then it is polymyalgia.  If after a few weeks you don’t feel better then it’s not. He went off to discuss this with another GP as I don’t think he is fully qualified yet.

He also said you need to be on them for about a year.  I said I wasn’t keen as I did not want to gain weight and he said keep taking paracetamol and he gave me some Ibupofen gel to rub on 3 times a day and if I changed my mind about the steroids to let him know  and he would prescribe them.

I reminded him that I had a UTI over Xmas and was on antibiotics and my lower back was really painful and it went right through to where I think my ovaries are but he didn’t seem concerned.

So the ball is in my court again.

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CLKD

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Re: Polymyalgia
« Reply #22 on: January 13, 2022, 04:32:39 PM »

Was it a urine infection or that dreaded atrophy ?  If you continue to have pains then maybe ask for an appt. with a Consultant, there is probably after all a waiting list so the sooner 1 asks? 

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CLKD

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Re: Polymyalgia
« Reply #23 on: January 13, 2022, 04:35:08 PM »

NHS website:

Steroid medicine is the main treatment for polymyalgia rheumatica (PMR).

A type of corticosteroid called prednisolone is usually prescribed.

Prednisolone

Prednisolone works by blocking the effects of certain chemicals that cause inflammation inside your body. It does not cure polymyalgia rheumatica, but it can help relieve the symptoms.

When used to treat polymyalgia rheumatica, prednisolone is taken as a tablet. Most people will be prescribed several tablets to take once a day.

To start with, you may be prescribed a moderate dose of prednisolone. The dose will gradually be reduced every 1 to 2 months.

Although your symptoms should improve within a few days of starting treatment, you'll probably need to continue taking a low dose of prednisolone for about 2 years. ( I think that this is arbitrary and will depend on how long someone has suffered as well as how symptoms resolve )
 
Polymyalgia rheumatica often improves on its own after this time. However, there's a chance it will return after treatment stops. This is known as a relapse.

Do not suddenly stop taking steroid medicine unless your doctor tells you it's safe to stop. Suddenly stopping treatment with steroids can make you very unwell.

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CLKD

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Re: Polymyalgia
« Reply #24 on: January 13, 2022, 04:37:25 PM »

Versus Arthritis is a UK-based information group.
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Taz2

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Re: Polymyalgia
« Reply #25 on: January 13, 2022, 05:52:50 PM »

If it's not impacting on your life too much then you could leave it but seeing the severe symptoms my friend developed when she decided to wait then I'd be inclined to give the steroids a try. Have the symptoms improved?

Taz
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CLKD

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Re: Polymyalgia
« Reply #26 on: January 13, 2022, 06:38:46 PM »

My Mum was immobile in quite a short time, about 3 weeks from noticing stiffening in her fingers to all over intense pain. Dad had to help her do everything.  I would be inclined, regardless of any possible side-effects with steroids, to begin treatment ASAP.  Without movement joints may seize up more than one would want which might lead to long-term problems.

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CrispyChick

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Re: Polymyalgia
« Reply #27 on: January 13, 2022, 07:59:01 PM »

Weird way to put it across to you!!

So I suspect my dad was suffering pain for a while before he mentioned and before he got really bad. When he was really bad, he couldn't eat, move, think... I was very worried.

For me (and him) the diagnosis is a god send. He has treatment. They're already talking about reducing the dose.

His gp defo goes on his bloods. It's the inflammatory markers I think. Correct - there is no test, but surely gp is meant to judge what they think it is.

Have a read about it. You're obviously not in severe pain. But do you want to live with the pain you have, if you could have it managed??? My dad had no choice... He was in a bad way.

Also, 1 in 5 people develop a more severe form. Doesn't sound pleasant. Arm yourself with info then decide.

If the steroids became problematic, you could wean off quicker???? Anyway, a few days trail won't hurt. I took them for 3 days for my asthma... Felt nothing.

Xx
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Pennyfarthing

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Re: Polymyalgia
« Reply #28 on: January 14, 2022, 09:41:40 AM »

Weird way to put it across to you!!

So I suspect my dad was suffering pain for a while before he mentioned and before he got really bad. When he was really bad, he couldn't eat, move, think... I was very worried.

For me (and him) the diagnosis is a god send. He has treatment. They're already talking about reducing the dose.

His gp defo goes on his bloods. It's the inflammatory markers I think. Correct - there is no test, but surely gp is meant to judge what they think it is.

Have a read about it. You're obviously not in severe pain. But do you want to live with the pain you have, if you could have it managed??? My dad had no choice... He was in a bad way.

Also, 1 in 5 people develop a more severe form. Doesn't sound pleasant. Arm yourself with info then decide.

If the steroids became problematic, you could wean off quicker???? Anyway, a few days trail won't hurt. I took them for 3 days for my asthma... Felt nothing.

Xx


Thanks CrispyChick.  I am in quite a lot of pain. Whether I wake at 2am, 4am or 7 am i have to take painkillers.  If I try and take my coat off I have to do it “downwards” as I can’t raise my arms much.  If i try to knit i can only manage a few rows and I have to get someone else to lift heavy dishes and trays into the oven for me. 

Everything I look at about steroids says they cause weight gain and “moonface” and I already need to lose weight so can’t possibly gain more.  I have taken painkillers this morning and Hubby has plastered me with ibuprofen gel.  We have to go out this morning so I will see how we get on. 

The GP did tell me that if I get blurred vision, bad headaches or pain in my temples then to contact them straight away as it could be Giant Cell Arteritis.
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CrispyChick

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Re: Polymyalgia
« Reply #29 on: January 14, 2022, 09:52:53 AM »

Yes, that's it. The giant cell arteritis. Sounds awful.

Well, my dad looks thinner than normal. Probably due to those 10 days where he didn't eat.

With your description, I'd be trying the steroids. My dad has his life back. Surely any weight and 'moonface' would go if you had to wean back off. What's the harm in trying??

And like I say, only 4 weeks in and they're looking to start tapering my dad already 👍
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