Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Pennyfarthing on January 06, 2022, 07:35:28 PM
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Seen the GP again today. I did have a UTI a couple of days before Xmas and had 7 days antibiotics. I am better than I was but still getting lower back pain which goes right through to my abdomen and feels like period pains.
I have had terrible aching shoulders, neck and arms for several months so she thinks it may be polymyalgia rheumatics so I went for a load of blood tests as well. The physio I saw thought I might have fibromyalgia but she thinks polymyalgia. I have to see her again when results come through.
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Sorry to hear this Pennyfarthing. Hope you get your results soon. I have had a few friends with PMR the latest being a male friend in his 60s. He was finding it difficult to do his job properly and his doctor totally missed the PMR possibility. We had a chance conversation in the pub and I mentioned PMR and he then suggested this to the doctor. He's beginning to feel better now but it's going to be a while before he can come off the steroid.
Taz x
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My Mum had this for months. It is characteristic in many cases; she began to stiffen up with a lot of aching until she couldn't move: Dad had to help her out of bed, get her dressed, hold a glass to her mouth. She was given steroids which caused her face to become bigger; it took 2.5 years B4 she felt better. It's a rheumatic disease so affects people differently.
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Sorry you're suffering, I hope it turns out to be something easily cured.
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Let us know how you get on PF. The sooner you get some treatment the better. :foryou:
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Thanks. Results should be back early next week but now I am having trouble getting to see GP again, who told me to go and see her when they’re in! I am hoping it is not polymyalgia as she says treatments will be steroids and I read that they can cause puffiness and weight gain!
As I left she mentioned my weight and I know I need to lose quite a bit but this past year has been so awful for many reasons that some days I feel so anxious that I don’t want to eat at all although I cook for the others. Then I have a couple of days when I feel a bit brighter and I eat for England.
I just cannot face going back to SW again as I meet the same people who have been going on/off for decades and are still struggling to keep weight off.
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My dad has just been diagnosed with this.
His gp was very quick to spot it. He has been on the steroids around 4 weeks - no issues with them. Not increased his appetite. They are helping.
He's to go back every 3 weeks at mo for bloods. I'm on it though. She wants to see him face to face, I make sure the receptionist is told that. If left to him, he'd just roll over...
Have hope. A diagnosis abd some treatment is better than the pain. I believe it is a long road, but they know the steroids work. X
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My dad has just been diagnosed with this.
His gp was very quick to spot it. He has been on the steroids around 4 weeks - no issues with them. Not increased his appetite. They are helping.
He's to go back every 3 weeks at mo for bloods. I'm on it though. She wants to see him face to face, I make sure the receptionist is told that. If left to him, he'd just roll over...
Have hope. A diagnosis abd some treatment is better than the pain. I believe it is a long road, but they know the steroids work. X
Thanks CrispyChick and hope your Dad continues to improve. I went out this morning and bought a wheat filled neck thing but I got it home, unwrapped it and it is very short so that will be going back!
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My dog had steroids and ate me out of every cupboard in the house ;D
Let us know how you get on, both.
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Yesterday my husband had been to a customer who told him she put on loads of weight and her face filled up like a balloon when she went on steroids. I honestly don’t think this is going to be an option for me! I am hoping the results come back as negative for polymyalgia and I won’t need steroids.
Why do Doctors say “come back and see me within a couple of days of your results” then you can’t get to see them for weeks? The best they can offer me is with another guy next Thursday and he is not quite qualified as when I saw him a few months ago he had to have another doctor sitting in with him.
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Could you ring your surgery and ask the GP to ring you at home? Regardless of the result? My hubby's X-ray result came back 'no further action required': no one phoned him nor did anyone ask whether he was still in pain !! he had to wait nearly 3 weeks to speak to our GP.
The swelling etc. lasts whilst the steroids are doing their work. Mum's reactions went down fairly quickly once she stopped the steroid treatment and the condition went away.
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Honestly, my dad has no weight gain or bloating so far.
Please stop worrying about the steroids. If it is that and they get rid of the pain, it might work out well. Xxx
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It probably depends on which steroids prescribed. Better have the treatment than the pain? And aren't we all wearing masks anyway ? ;-)
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One of my friends delayed starting treatment for the same reason but after three months could no longer drive or do even basic tasks. She then started the steroids and her symptoms improved very quickly. It is a long term treatment but the alternative of not getting treatment means that everyday life can be difficult.
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I can't remember how long Mum required treatment, I think she was monitored by the amount of pain and possibly blood tests. The sooner treatment starts I would think the sooner the inflammation comes under control.
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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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That's good news.
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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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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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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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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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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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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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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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Versus Arthritis is a UK-based information group.
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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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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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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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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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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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Hi Penny. I really do urge you to try the steroids. Yes it can cause weight gain and a moon face but both of these things to go again after you stop the treatment. I appreciate you don't want to gain more weight but better that surely than being confined to the house and needing help with personal care? My male friend was really relieved when his GP said he suspected PMR as it gave him his life back within three days. He thought he had an untreatable condition and he would have to give up the job he loves. Please consider it. You really don't want the giant cell arteritis.
I'm so pleased for your dad CrispyChick.
Taz x
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Tnx CrispyChick. My Mum couldn't leave the house anyway for several months after beginning steroids, apart from us visiting she didn't see many people.
U may find PF that once the condition stabilises and steroids are weaned off, that some of the weight will disappear. Could it be weight gain being an underlying reason for the condition, is there a link?
I have a low pain threshold as well as having lost years to depression, so me, being me: would opt for treatment. I might look like a hamster for a while, so what. I'm wearing my mask regularly too so no one should be getting close enough to notice ;)
Is the painkiller/gel regime easing the stiffness at all?
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How R the aches and pains?