Thank you so much. : Thank you so much to all of... - PMRGCAuk

PMRGCAuk

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Thank you so much.

7 Replies

Thank you so much to all of you who have replied to my plea for advice. Sorry I havent responded sooner, sadly having a rough day.

When at the beginning of the New Year I initially tried to reduce the Pred at my Dr's request, it was only half a mg, but my symptoms weren't fully under control, or stabilised & I had just had a cold. With hindsight now, maybe the short term deterioration I experienced then was Steroid Withdrawal, rather than a PMR flare.

The 6 week deterioration I experienced after toggling for just 3 days between 15mg & 12.5mg at the Rheumys request, must have been a flare though & it left me so very much worse.

Given that I have a slightly dodgy liver, due to long term painkiller use for spinal damage due to injury many decades ago, I think I am going to politely refuse the Rheumys offer of Methotrexate or other DMARDS. I think that once I can get my pain levels fully under control, I will try the tortoise & the hare reduction method. Let's give the Pred a chance. Apart from moon face & bone density loss, now being treated with Alendronic Acid, I seem to be tolerating it fairly well.

Again thank you all for your support.

Sarah

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7 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Sarah

Good move! Give the Pred a chance. We know it’s not the nicest drug in the word, but it does what it says on the tin - if the doctors give it enough time.

Why add in another unknown unless it’s really necessary.

Once you’ve stabilised you will feel more in control, and then listen to your body - it will tell you what to do!

As my GP, one of the wise ones said to me “you know you own body better than any doctor, reduce when you feel it’s right”

Pity there’s not more like him. Good luck

Rocketronzy profile image
Rocketronzy in reply toDorsetLady

Good points. D Lady.

Perhaps we should all tell our doctors that. 😤 after all no one feels our pain and knows where it is. Unless it’s a great red angery carbuncle

I fined that frustrating that when we go to doctors, nowt to show 🤨 all my problems most of the time is in the night

So at back of my mind I am thinking do they really believe me 🙄

Ok getting down from mi box feeling dizzy.

And my eyes are beginning to hake Yes I know it sounds fishy 😂😂

🍀🍀🍀🍀

SheffieldJane profile image
SheffieldJane

You sound like a determined lady with a plan! I’m tempted to say that nothing makes PMR laugh more than a plan but I won’t, I’ll just wish you all the luck in the world. We are here if you need us. So sorry that you’ve had a rough day. Let’s hope tomorrow is a really great day - it often happens.

Marijo1951 profile image
Marijo1951 in reply toSheffieldJane

' Nothing makes PMR laugh more than a plan' - excellent and sadly true...

Better the devil you know. Hopefully as you taper you will feel better. The withdrawal does seem to hit me for too long. It's good you made a decision despite a rough few days. Good luck🌻

Rocketronzy profile image
Rocketronzy

Thinking about it I seam to be doing that all the time trying to please the ********* Doctors Instead of my own body but only with prednisone.

They seem to be more control freaks with that than anything. 😲🤨

I only go down down because they say so

My new weeks resolution is to listen to my body and not only them.

Sorry for the soap box.

But a sleeping Summat has been woken readings all your postings. 😤😬

Soraya_PMR profile image
Soraya_PMR in reply toRocketronzy

Good for you ronzy.

Time to get ‘stroppy’. At your doses (3mg?) you’ll not be doing any harm, but a reduction might result in raised doses, which would be stupid. Wish the docs would listen!

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