Update - GP who does not agree with P... - Hughes Syndrome A...

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Update - GP who does not agree with Prof Hughes

Jade profile image
Jade
5 Replies

So the GP relented, just. My DS now has 20 injections but, wait for it, cannot use them until he gets a blood test next week to check platelets, then when the GP has looked, bearing in mind the GP only works part time, he can use them, but after 5 days he must do another blood test so GP can check platelets, and then do it all again after 10 days.

So my DS works in another city, but do GPs care about inconvenience? Prof Hughes has not requested this and has only recently done a full compliment of bloods at the Lupus Centre.

I have had a supply of fragmin to use for 9 years and never been told to do this.

And what bothers me at the end of the trial there is no provision for anything. But if warfarin is the way forward another fight will ensue I'm sure. Especially as my DS will want to self test. :(

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Jade
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Jade profile image
Jade

If I was him I would but he is non confrontational and thinks the GP won't help him further if he crosses him.

Prof Hughes does not know the GP is doing this nor does he want him.

I know it's just a trial I too went down the same route in 2004 I have not been tested either.

He says as NICE do not recommend it for APS he has to do this.

Now DS is trying to work out when he can start to fit in with these tests bearing in mind Easter is nearly here and GPs will be shut.

What a joke.

daisyd profile image
daisyd

Hi I would change your Gp as soon as possible, tomorrow !

I thought the whole point of the heparin is that you don't need to keep having the bloods taken?! Bizarre!

MaryF profile image
MaryFAdministrator

Oh dear, how taxing for you, hope it all smooths out a bit for you. Mary F x

Jade profile image
Jade

Well those all important platelets are OK so the trial can begin. BUT guess what now, he cannot play football during the trial I case he bangs his head.

23 years old, football is a stress release so let's say don't play. What would happen if it was lifelong heparin I wonder.

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