Sticky Blood-Hughes Syndrome Support
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Update - GP who does not agree with Prof Hughes

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. :(

6 Replies

And what would happen if he was to just use them?................!! It is a trial after all and who is he reporting the results back to????? If it is to Prof H just do the trial, report back to Prof H and get him to write the recommended treatment to the GP.

I would not pander to the whims of this person who obviously does not understand that two weeks of Heparin is not going to affect anyones platelets to such a degree that they are going to be at risk of bleeding (which is obviously the reason they are making them do the blood tests).

I have been doing Heparin for almost 2 years and my GP has NEVER once taken my blood!! Gee whiz sigh..........


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.


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!


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


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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