Locum suggesting high dose steroids for my knee p... - PMRGCAuk

PMRGCAuk

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Locum suggesting high dose steroids for my knee problem.

IdasMum profile image
18 Replies

I've toyed with posting here as it's been months since I last posted.

I hope you're all managing during these extraordinary times we're living in.

We've been keeping our heads beneath the parapet, semi sheilding and wearing mask whenever we're entering a shop. This is no 'obligatoire' for which I am greatly relieved. We've done online shopping which we can collect from outside the supermarket, so I rarely have to go in.

8 weeks ago I attempted to drop .5mg per week making my dose 3x7.5 and 4 x 7 each week. After 10 days I was very unhappy and struggling. Tearful, fragile and not coping with my normally good organisational skills. So, I am now back to 7.5mg per day as it's taken that to get me back to somewhere reasonable.

3 weeks ago I had sudden onset left knee pain. Stiff and painful, difficulty walking and then the right knee became painful but not as much as the left.

I waited to see if the problem resolved and it began to. On Monday this week I had my normal blood test and my CRP is 40! Normally it's around 11.

I made an appointment 2 days ago to discuss with Dr, sadly my usual Dr is on holiday, so today I saw one of our local retired Dr's who is standing in.

My knee was much better (isn't it always the way by the time you get to your appointment?). I wish I'd seen my own Dr who knows my history but too bad.

After a quick examination which was uncomfortable he suggests there is some fluid there. His treatment plan is to take 80mgs Cortisone today (I didn't) and 100 mg tomorrow and for 5 days! My knee has been saw since his examination but there is no way I am willing to risk all the months and months of balancing dosage by following this short term therapy.

OMG!!!!! I am interested to hear your thoughts.

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IdasMum
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18 Replies
SnazzyD profile image
SnazzyD

Er, I’d really want to know what they think is the mechanism behind the swelling and why it would benefit from a short term sledgehammer dose. Do they have x-Ray eyes? 100mg is a serious dose with issues and I’d want to know that it would do some serious good in the long term that nothing else will.

IdasMum profile image
IdasMum in reply toSnazzyD

Thank you. Unlike my own Dr this one is old skool and didn't like my horror at his treatment plan. In the end I just agreed and took the prescription away with me.

Knee quite sore last night but that's due to the THOROUGH examination yesterday.

Pretty sure it's not mechanical.

PMRpro profile image
PMRproAmbassador in reply toIdasMum

What the eye doesn't see the heart doesn't grieve over ...

I might have considered it had he offered an injection. Oral? Not so much. And nothing without some investigation as to what was causing it.

Theoretically a 5 day burst of a high dose can be taken and stopped and shouldn't affect the usual dose. But you never know.

And cortisone - I don't think it is pred, it is hydroxycortisone and the dose relationship is times 4 - his 80/100mg dose was really 20/25mg pred so nothing like as bad as you think.

IdasMum profile image
IdasMum in reply toPMRpro

It's Cortancyl which is Pred sorry. My fault for not being clear.

If you think it shouldn't knock me off balance I am tempted, as everything is just a bit too hard currently. Working my way through much needed housework but taking breaks each 30 mins.

PMRpro profile image
PMRproAmbassador in reply toIdasMum

Oh sod the housework - that's what I do!!!!! I did dust my bathroom floor this morning ...

Hum - not sure I'd do 5 days at that dose. That is a hell of a lot of pred.

IdasMum profile image
IdasMum in reply toPMRpro

I'd like to sod the housework but there are bits that really needed attention. Pleased to say they've been attended to so I can ignore for a few days.

Have decided to go half way, 50mg per day for 4 days and give myself a break from the discomfort. I was prescribed a short term high steroid therapy some years back and during the treatment Mark and I were stacking firewood for winter. I was throwing logs to him from 2 metres!! I don't plan to do that this time :D

PMRpro profile image
PMRproAmbassador in reply toIdasMum

Goooood!!!!

SheffieldJane profile image
SheffieldJane

OMG!

My Rheumatologist was about to draw fluid off my knee and then inject with steroid, when lockdown made us all freeze. I would have questioned the massive dose.

IdasMum profile image
IdasMum in reply toSheffieldJane

Thank you. Reassuring that your response is horror also lol

jinasc profile image
jinasc

I developed Pseudo Gout, (too much calcium). My Rheumatologist just drew it off. The relief was from the sever pain was bliss and within a bout a week, everything felt OK.

Needless to say, I stopped all calcium supplements and asked for a Calcium blood test. It was high, but about 3 months later back to normal.

No way would I take 100mg normally you are only given that amount in hospital and also do it intravenously normally. As far as I am aware.

I might try 10mg for a five days and see if you get some relief...........

IdasMum profile image
IdasMum in reply tojinasc

I suggested Gout as it felt like that a little. Even uncomfortable with a light duvet cover resting on it however it didn't feel hot to touch. Felt hot inside.

I don't take Calcium supps.

PMRpro profile image
PMRproAmbassador in reply toIdasMum

A usual dose of pred for gout would be 25mg daily for a week - OH felt relief immediately and took it for 5 days I think. I'd try one dose and see what it did ...

nickm001 profile image
nickm001

I suffer from an old sport knee injury and every so often - maybe every 3-4 years it develops swelling due to excess fluid. My Dr calls it "knee is crying" from overuse :) ... Never the less he drains the liquid from the knee. Procedure takes just a couple of minutes and relief is immediate. No steroids, no any other medication.

IdasMum profile image
IdasMum in reply tonickm001

I think it's a small amount of fluid. I expect I moved it badly without noticing.

I didn't ever look swollen.

PMRpro profile image
PMRproAmbassador

I'll repeat my response from above:

What the eye doesn't see the heart doesn't grieve over ...

I might have considered it had he offered an injection. Oral? Not so much. And nothing without some investigation as to what was causing it.

Theoretically a 5 day burst of a high dose can be taken and stopped and shouldn't affect the usual dose. But you never know.

And cortisone - I don't think it is pred, it is hydroxycortisone and the dose relationship is times 4 - his 80/100mg dose was really 20/25mg pred so nothing like as bad as you think.

IdasMum profile image
IdasMum

So, having decided to do a half measure approach, I have taken a 2nd dose of 50 mgs today. OMG! I am moving like a human being. I wonder if this is how 65 feels?

If only I could do this forever lol

Damn you PMR.

PMRpro profile image
PMRproAmbassador in reply toIdasMum

What it DOES mean though is that you are almost certaily trying to struggle along at too low a dose!!! You could try 25mg tomorrow ...

IdasMum profile image
IdasMum

I agree have been too low. Will drop again tomorrow and I certainly intend to increase my normal dose at then end of this.

My normal dose has been 7.5 per day since my failure to reduce a few weeks back.

Hope 8mg x 7 will be enough to keep me human.

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