Silly question about steroid use.: I am down to 7mg... - PMRGCAuk

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Silly question about steroid use.

granny-b profile image
25 Replies

I am down to 7mg per day for GCA in all my major arteries. Feeling OK and crp is pretty constant at 2 or 3.

What isn't so good are my knees. I was wondering (hoping) what can be done to help my mobility, specifically steroid injection?

Assuming I can't have the injection does anyone have any suggestions please.

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granny-b profile image
granny-b
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25 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

What is causing your knee problems?

If it’s arthritis then a physio may help, and you can have steroid injections - I did when I was still on Pred. But you need to know what it is before you can treat it.

granny-b profile image
granny-b in reply to DorsetLady

Thanks DorsetLady.

I am greatly comforted by your, and others, who tell me a steroid injection is possible.

I am extremely lucky to have a daughter who is a physio. I have been working on my muscles for coming up for 2yrs to try to maintain my mobility. Also I have lost over 4 stone.

As for my knees, the left one gives way unexpectedly but the major problem is my right knee. I had an injection in it several years ago. More recently I had an x-ray showing wear and tear. It has recently started to hurt all the time, sometimes keeping me awake at night. I take paracetamol but refuse to take co-codamol.

Blearyeyed profile image
Blearyeyed in reply to granny-b

As DL and PMRpro have said you need to know what is causing the trouble in your knees first before you can be sure that a steroid injection is the right treatment or whether you need something else done to fix it heal it.

An injection is possible , yes , but only if it's what your diagnosis proves you need.

If you haven't had it investigated recently you will need to go to the GP and arrange for x-rays , possibly an ultrasound too and then they will be able to decide what can help you.

Well done on your physio work it's worth continuing with it but just keeping an eye on how much you do if you find some exercises make the knees hurt more.

In fact , if you write down a list of activities or exercises , types of movement and times of the day that you feel you knees get worse or suffer rapid pain that will help them understand what is going on and make a better diagnosis.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to granny-b

From personal experience I would say arthritis in knees!

I’m not keen on co-codamol either but pharmacist suggested I take one low dose C-C 8/500mg plus one Paracetamol 500mg at night-time rather than 2x Paracetamol. Did help without the usual C.C side effects.

granny-b profile image
granny-b in reply to DorsetLady

Rang this morning for a GP appointment and got one for later this morning! How lucky am I?

I saw my own GP who offered co-codamol, co-didramol or morphine! I declined all 3 as codeine makes me delirious and I am pretty sure morphine would be the same. I asked for a steroid injection and after a little discussion and inspection I have an appointment on Monday with the practice expert.

Given my luck I went for a third. I also was given a referral to endocrinology for my intermittent thyroid problems.

I think buying a lottery ticket would be pushing it although I could donate to the wonderful NHS.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to granny-b

🤞fingers crossed the injection does the business!

granny-b profile image
granny-b in reply to DorsetLady

Thanks

PMRpro profile image
PMRproAmbassador

No reason not to have steroid injections just because you are on steroid tablets.

But as DL asks - what's up with your knees? Have they been x-rayed at least?

Yellowbluebell profile image
Yellowbluebell

I developed pain in my groin/hip a few.months after pmr diagnosis which xrays showed was wear and tear. My gp organised a steroid injection under ultrasound which has worked wonders. See your gp and find out if its something he can organise.

piglette profile image
piglette

I have just had PRP (Platelet-rich plasma) injected into my knee today. It is extortionately expensive though. I have three injections over the next three months, today’s was the first. Apparently Rafael Nadal has had it for his knee.

Mary63 profile image
Mary63

I had two PRP injections last year, with no effect. Up till then physio and gym work had helped. I ended up having a total knee replacement in February. My consultant wasn’t keen on steroid injections, though I do believe they can help a lot, though you would prob need to have it done again later on. I dont think you can have more than three though. But undoubtedly it would make you more comfortable.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Mary63

Three in any year - not three in total.

granny-b profile image
granny-b in reply to DorsetLady

I have had 1 before but that was several years ago pre 2014.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to granny-b

I’ve had more than I care to recall - 3 for supposedly frozen shoulder post GCA plus 4 in same joint over last 3 years (post GCA definitely OA, plus knee (3 or 4) and hip (1) pre replacements.

Most have been successful - except for pre GCA - for obvious reasons.

granny-b profile image
granny-b in reply to DorsetLady

Will let you know.

piglette profile image
piglette in reply to Mary63

I hope I am not wasting my money! The doctor said it can put off a knee replacement for seven years. I wonder if it only works if it is just initial knee problems? He also said the first injection does not really make any difference, you do need more. Perhaps he is just a good salesman!

PMRpro profile image
PMRproAmbassador in reply to piglette

Do tell us how you get on with it though!

piglette profile image
piglette in reply to PMRpro

I definitely will, particularly if I am throwing away my hard earned cash. It is all right for Rafael Nadal he can afford it!

PMRpro profile image
PMRproAmbassador in reply to piglette

Probably gets it free for the advert ...

piglette profile image
piglette in reply to PMRpro

Interestingly enough the doctor I saw asked me how long I had been taking steroids and he immediately said you should be taking bisphosphonates! NICE say anyone on steroids for over two months should be on them. Perhaps this is why every doctor I see nowadays goes on about AA or equivalent. When I tell them I have a positive T score they look at me as if I am lying.

PMRpro profile image
PMRproAmbassador in reply to piglette

NICE say a lot of things. Not all good ...

piglette profile image
piglette in reply to PMRpro

And doctors believe them!

PMRpro profile image
PMRproAmbassador in reply to piglette

Unfortunately!

PMRnewbie2017 profile image
PMRnewbie2017

You could speak to a podiatrist. As we get older our feet are less able to absorb shock and our gait alters with balance issues etc. Your daughter might be able to help too. Shoes with thicker shock absorbing soles will help impact forces transmitting through the knee. Biomechanic orthotic insoles may help but they can be expensive and might not be appropriate in your case. Fish oils, being anti inflammatory, might help.

Hellyowl profile image
Hellyowl

Pilates. It has been my life saver. Especially if the coach is a physiotherapist. Steroids have weakened my muscles and I get pain if I don't keep them strong. Whatever is wrong strong muscles to support weak parts should always be a help.

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