My mum has pmr

[ChrissieMc]

Poor Mum is 80 she is so much pain. Some days can’t even lift the kettle up. She’s only been diagnosed by doctor. Should she see consultant? If so who and where would she go? Her doctor has her on pred and trying to get her to cut down. If she only take 5 mg a day she can barely get out of bed. We are happy to pay private to try and help her thanks in advance

[Longtimer]

Someone will come along soon to give advice, and perhaps ask you more details, but what I do know is 5mg is a low dose, and far too low for your mother, that's why she is i n pain.Most people start with 15m g, and then SLOWLY drop the dose, whatever the doctor may tell your mother. It's her pain, not his....

Try to go on the Polymyalgia website in the meantime....hope this helps....

[ChrissieMc in reply to Longtimer]

Thanks for your help. She is having some side effects on the steroids. Puffy joints red blister skin on her hands and feet. Weight gain. The doctors are really stressing she needs to drop dose but the she can't move. I'll go in website thanks again 😊

[Hidden in reply to ChrissieMc]

Is your mum able to go onto a low carb diet? That will help with weight and perhaps low salt. Hydrate more to help swelling and feet up when possible.

Sorry about the questions but easier for us all to give good info. How long has your mum been diagnosed. To be on 5mg I would be imagining well over a year. If any shorter time then it sounds like reduction too fast. As many have said in here before...symptoms are the main priority. Did your mum get relief at first. What was the last dose she was on that she was comfortable pain and stiffness wise?

The Dr might want your mum to reduce but what's s/he doesn't have to live in your mum's body. I am sure others will be along soon with info and advice.

I had to get a rocker thing for my kettle. A wire contraption that hold your kettle and tips it. I was able to fill with a light jug and then tip it into my cup. You have to fill it to the top so not good for environment but makes it easier to our. I was 55 so no shame in an 80 year old needing a helper. 🌻

[piglette in reply to ChrissieMc]

Hi Christie, I get the red blisters, called purpura, sometimes I look as if I have been attacked by a wild animal. They are something I have just learnt to live with normally they are OK it is only if they start to bleed there is problem. Particularly the sheets taking on red dots!

[DorsetLady PMRGCAuk volunteer]

Hi Chrissie,

Sorry to hear about your mum. Here are a couple of links that might help you.

nhs.uk/conditions/polymyalg...

healthunlocked.com/pmrgcauk...

As Longtimer says 5mg is not enough, and usual starting dose is 15mg for PMR. Yes she is likely to get side effects with Pred, but she needs to be on a dose that is enough to take away her pain. No point otherwise. Some doctors seem to have a very strange attitude to Pred, but unfortunately it’s the only drug that helps with PMR.

If you tell us where you live, someone may be able to recommend a Rheumy, but she will still have to be referred by her doctor.

Good luck

[SheffieldJane]

Oh dear ChrissieMc.

What was your mum’s start dose of Pred?

Did she obtain immediate relief from her symptoms?

How long has she been diagnosed for?

Where are you?

In my view, your mum should not be suffering to this extent on the correct dose of Prednisalone somewhere between 15 mgs and 25 mgs. She should not be tapering the dose down until her symptoms are under control.

If it was my mum I would be seeking a good Rheumatologist who is conversant with the treatment protocol for PMR.

Someone may be able to recommend one if you tell us where you are.

Wishing you well, she’s lucky to have you in her corner.

[ChrissieMc]

Thanks every one for helping. She was diagnosed a justbovee a year ago if she takes 5mg at night and 5mg in morning she gets some relief but the doctor has worried her so much about being in steroid she wants to get off them. We will in Bedfordshire. I went to see rhemy last year as I have similar symptoms but in my knees but she didn’t want to know and said I had low calcium but been taking loads of vitamins etc and made no difference to me. Could I have got it from my Mum ? So I don’t want Mum to go Bedford as consultant bit useless if you ask me!! Thanks again

[yogabonnie in reply to ChrissieMc]

She can't just stop taking 5 in morning and 5 at night to taking only 5 once a day. It will cause a terrible flare. Re read all the links from Dorset Lady and others. You can't catch PMR from your mum. Good luck. It is very confusing but read the information and check around on this site! You'll find lots of answers in the "search PMRGCauk on the upper right.

[PMRpro Ambassador in reply to ChrissieMc]

If your calcium was low you need to have your vit D tested - and also some other tests done. Low calcium can be a sign there is something not right and can be the cause of various symptoms some of which may be similar to PMR. Find a GP that isn't so lazy - at the very least you need to improve your diet and possibly take supplements to get the calcium back to normal. If both calcium and vit D are low - you are increasing your risk of developing osteoporosis.

[ChrissieMc in reply to PMRpro]

I have loads of blood test physio and now x rays awaiting results next week. I’m on every vitamin and supplement known to man!! Turmeric Cannabis oil(the legal one) I have very healthy lifestyle as an equestrian and go to gym 3 times a week. That’s why Doctors and physio so baffled. It’s so frustrating not to be active as my knees hurt so much. Have same pain as Mum but she has it all over especially in her arms.

[DorsetLady PMRGCAuk volunteer in reply to ChrissieMc]

Hi,

Have a look at attached, it gives list of local groups. If you contact local organiser they may more info on Rheumatologists in your area.

pmrgca.co.uk/groups/

As yogabonnie says you can’t catch PMR, but if it’s in the genes you may be more predisposed to it, some on here have said they now realise a relative had it, but it was never diagnosed as such.

[ClarkB in reply to ChrissieMc]

I would have had to wait 3 months to see a consultant and the Dr didn’t want to prescribe medication until there had been a correct diagnosis. I went to see a private consultant who saw me within 2 days and immediately prescribed 15 mg prednisone. It was worthwhile seeing him; he phoned me at home to check on things and a contact number if I had problems. I am on a 1mg reducing dose each month. I have side effects, but this is the prednisone and I already had osteoporosis. I felt the private Rheumatologist considered all aspects and gave reassurance. I certainly couldn’t have waited 3 months. I didn’t have treatments in a private hospital which would have been very expensive, but the consultation was reasonable. Worth looking online in your area and reading reviews.

[piglette in reply to ClarkB]

I cannot believe that a doctor would leave you in pain for 3 months. I know I was in agony before diagnosis. I went privately too as my GP kept saying I had a virus, a long term virus!

[PMRpro Ambassador]

If her GP is trying to get her to cut down the pred at the rate I think you mean she is bound to get the pain and stiffness back.

PMR lasts at least 2 years, the average duration if 5.9 years, and for many older patients it may mean they are on pred for the rest of their life - although I know a 90 year old who is finally nearly off pred. But you need enough or it is pointless taking any,

In PMR the doses used are not a problem long term. Show the GPs this, the most recent study, done because the author is concerned too many patients are being forced to manage with too little pred needlessly:

medpagetoday.com/rheumatolo...

and certainly not for people who are older when it starts. I have been on pred for nearly 9 years - I have no side effects at all that I wouldn't have developed due to aging anyway in that time.

You can't "catch" PMR but there is a hereditary aspect in that you and your mum have similar genes and will have been subject to similar environments so it isn't unusual to find cases in the family when you know what to look for.

There is a particularly good rheumy in Chertsey who does private work if you want to consider seeing one.