Hi...I my Mum has PMR and can't take Steroids..She is very depressed...Any advice would be great:}
Posted , 7 users are following.
She has always been life and sole of the party. This not my Mum very down and crying ....
0 likes, 21 replies
Posted , 7 users are following.
She has always been life and sole of the party. This not my Mum very down and crying ....
0 likes, 21 replies
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FlipDover_Aust jane37519
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jane37519 FlipDover_Aust
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FlipDover_Aust jane37519
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There are a couple of real experts on here who will be along later who may be able to give more advice.
FlipDover_Aust jane37519
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It is an extremely painful, dibilitating condition without the steroids, even with them life can be difficult, so I don't know what she's going to do if she can't take them.
If you read here long enough, it seems most of us that get this are real 'doers' - busy people who are always on the go and that's why it hits so hard.
Get your mum on here to talk to us, we can offer support that she can't get anywhere else.
jane37519 FlipDover_Aust
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FlipDover_Aust jane37519
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constance.de jane37519
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Without steroids she is in for a lot of pain. Our 'experts' will no doubt be able to give you more advice soon.
Our thoughts are with your Mum and you.
FlipDover_Aust jane37519
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EileenH jane37519
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https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find lots of resources and information, much of it aimed at the lay person. You can download and print them if your mother doesn't use a computer.
However - as someone else has already said, maybe this is a time for your mother to learn as it will allow her to keep in touch with people in a similar boat and exchange experiences.That said, almost all of us take pred because it is currently the only answer to PMR and does give us a far better quality of life - above all less pain.
I had PMR for 5 years without any medication - not out of choice but because it wasn't diagnosed. I did aqua aerobics as early in the day as I could and found that meant I could function better for the rest of the day. Using an electric blanket BEFORE getting out of bed has been found useful by some people, then getting into a warm shower where they can stretch and do simple exercises to get their shoulders and hips moving, the more you can mobilise the muscles and get the blood flow going the better you feel and it builds up over the day. I used to stagger out of bed, put my swimming costume on and jogging bottoms and sweatshirt to get to the pool where I showered before the class. I needed a warm pool though. After that I was able to do a Pilates class a couple of times a week - and that also helped keep me able to move.
I know I'm sounding a bit hard but really either you learn to live with pred side effects - and they do usually improve with time and reducing dose - or you have to learn to live with the pain, stiffness and disability. I used to be very breathless with PMR itself too - I could barely climb a flight of stairs at home never mind any more and that was on hands and knees. Being on the pred at least improves the pain and stiffness - but it doesn't mean she will be able to go back to the same level of activity as before for some considerable time. The muscles remain intolerant of exercise and, while it is possible to get back to the usual exercise level, it does take a very long time to get there, you have to train your muscles again. Pacing and rest are essential so maybe she might find the breathlessness easier to cope with if she isn't trying to do as much - it is a recognised side effect of pred.
Some people do find that an antiinflammatory diet helps some - oily fish 2 or 3 times a week, using turmeric and garlic in cooking and so on - MrsO is our guru there, my knowledge stops there.
What dose of pred did they try? Did they just try pred tablets in a single dose? Where do you live? Has your mother seen a rheumatologist or has she just been under the GP? If you tell us a bit more we may be able to come up with some suggestions.
constance.de EileenH
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Thanks. Constance
EileenH constance.de
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What dose are you taking? The sort you can buy OTC in the UK or is it the higher dose from the GP? I have no idea what the regulations are in Germany - I just know I can't even get paracetamol alone from anywhere other than a pharmcy here. I'd never take cocodamol as I find even a single dose of codeine intolerable. And watch out for constipation with the codeine.
constance.de EileenH
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I was interested to read that people felt a sort of high on these tablets. I never have. They just help the pain.
No problem with any side effects, constipation included.
I'll soldier on with 2 per day (I never take them if I have no pain).
So difficult to know sometimes whether the pain is PMR, OA or what. I certainly don't want to yo-yo with the Pred.
EileenH constance.de
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If 7mg pred helps with the other pain - why not stick there for a bit? This is a physiological dose and not doing much harm at all.
constance.de EileenH
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I'll stick to my 6 1/2 mg for a while. See how it goes.
constance.de EileenH
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EileenH constance.de
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FlipDover_Aust EileenH
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Throughout the years I've had all sorts:
Cigarettes
Alcohol
Nasal spray
Food(!)
Chocolate
now Panadine (co-codamol)????
SHOOT ME!
LOL
EileenH FlipDover_Aust
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constance.de EileenH
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