Pot of gold at the end of the rainbow?: To all of... - PMRGCAuk

PMRGCAuk

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Pot of gold at the end of the rainbow?

Poshdog profile image
24 Replies

To all of you who have followed my trials and tribulations - I had face 2 face with my new GP.

She advised on DSNS method of reducing (I had not said a word about it), she agreed to write prescriptions on the amount of prednisolone as and when I needed it.

I am to stop statins for at least 3 weeks as I continue to try to reduce from 4mgs to 3.5, and when/if successful, to take one a week, building slowly up but not taking on consecutive days.

Sertraline 50mgs a day, and further appointment in 5 weeks to check progress.

My goodness, do I suddenly feel looked after? Covid booster arranged for dependent 45 year old son (asperger's syndrome) further protecting me, the carer.

She is born and trained in Belgium. Has that an influence on attitude? She also knew about you lot!

A thousand and more thanks for all encouragement and support ❤️

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Poshdog
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24 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

good news ….

SheffieldJane profile image
SheffieldJane

I really love it when things come right. All you need is an enlightened doctor and it falls into place. Best wishes to you and your son.x

Poshdog profile image
Poshdog in reply to SheffieldJane

thank you - I could have kissed GP!

Sharitone profile image
Sharitone in reply to Poshdog

With a mask on, I hope!😉

Poshdog profile image
Poshdog in reply to Sharitone

virtually !😷

Kendrew profile image
Kendrew

How encouraging to hear of a GP who for once sounds familiar with both PMR and the use & management of steroid medication.

Poshdog profile image
Poshdog in reply to Kendrew

yes it was very encouraging and I was interested in her take on statins. Tried and refused initially as could not distinguish aches from statins/PMR/steroid withdrawal, so will give new regime a try!

Kendrew profile image
Kendrew in reply to Poshdog

I must admit, I did wonder about the statins as I also take them and wondered why the GP was stopping them.

Poshdog profile image
Poshdog in reply to Kendrew

my new GP seems to be advocating a Dead Slow Nearly Go approach. Wait until reduction of pred achieved then slowly introduce statins. Any aches then stop. She tells me that even one statin a week contributes something positive. Not absolutely sure of the need having read Pro's articles re age etc so will treat very carefully xx should have read 'tread', treats are something entirely different!

Theziggy profile image
Theziggy in reply to Kendrew

I was prescribed statins but told the GP that there was no way I was going to take them. I have just read too much about the side effects of statins

PMRpro profile image
PMRproAmbassador in reply to Theziggy

And they keep telling us they are all in our minds! Funny how I had a major PMR flare 3 weeks after starting a statin? First 2 weeks were great, nothing, I even said so to a doctor. Then the start of an absolutely foul 6 months.

Kendrew profile image
Kendrew in reply to Theziggy

I felt the same, particularly as I did much research around them (and still keep up to date) but unfortunately my cholesterol reading reached almost 14.0 last time I stopped them! I've been on them for 20yrs or more with one break and been lucky enough to not have experienced any side effects during that time.

That reading was critically high and put me in the dangerous category of being very high risk for a cardiac event. Needless to say I'm still taking them.

There are far more toxic medications than statins but there's absolutely no medication that doesn't have the potential for serious side effects.

We all have to make up our own minds based on our own personal circumstances of course.

Jackoh profile image
Jackoh

wow! How encouraging all round. So pleased for you. X💐

Poshdog profile image
Poshdog in reply to Jackoh

thank you - getting there, I hope, an amount of scepticism still lurking!

123-go profile image
123-go

"....I feel looked after." That comment stood out for me and I'm so pleased for you!

Poshdog profile image
Poshdog in reply to 123-go

thank you. It has been a lonely journey with caring responsibilities for other family members, but survived, thanks to all support on forum and kick up the butt from Pro! xx

PMRpro profile image
PMRproAmbassador in reply to Poshdog

I'm renowned for those kicks :)

jinasc profile image
jinasc in reply to PMRpro

Too true.....................👍

Poshdog profile image
Poshdog in reply to PMRpro

thought you might be - metaphorical ones of course 😉

PMRpro profile image
PMRproAmbassador

Sounds like a find! Belgium - I think European GPs tend to be much broader-minded, There are lots of things used over here that are simply ignored or dismissed by English=speaking doctors.

jinasc profile image
jinasc

I would have had to ask how she knew about 'us lot' and where she had came across that information.

Mind I am nosy but Belgium and Netherlands are next door to each other and I am wondering if she knew about the Marike Foundation.

Would be nice to know if she knew about DSNS from Sarah Mackie's small research trial.

In the old days, we used to send a whole heap of stuff out to people located in Europe, particularly Scandinavians.

The old saying 'small world' comes to mind.

Keep a tight hold on her.

Poshdog profile image
Poshdog in reply to jinasc

Will certainly keep tight hold. Shall ask her a bit more next time but was quite gob-smacked as not expecting such a positive consultation! She is quite young (but then most people seem to be quite young now) and has been in UK last 10 years. Just shows you can't be in the wrong place all the time xx

jinasc profile image
jinasc in reply to Poshdog

Serendipity rules KO. 😊

PMRCanada profile image
PMRCanada

Sounds like a keeper!

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