Sticky Blood-Hughes Syndrome Support
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Can you help take part in a clinical trial?

Alexion Pharmaceuticals are investigating a possible new treatment for APS.

They are looking for people aged between 18-75 who have tested postive for antiphospholipid antibodies, and have at least one of the following signs or symptoms called “non-criteria manifestations" of APS:

APS-related kidney problems

APS-caused skin problems

Low platelet counts

There are a number of centres currently taking part in the trial across America, and in France and the UK.

In America the medical centres are located in New York, North Carolina, Texas and Virginia.

In France the hospital is based in Meurthe-et-Moselle.

In the UK the University College of London is taking part.

Travel assistance is available.

You can read more about the trial here: alexionclinicaltrials.com/a... and please contact Alexion at clinicaltrials@alxn.com if you have any questions and would like to take part.

13 Replies
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Thank you for putting this on. MaryF

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Thanks Kate.

I am aPL positive but I haven't had the 'non-criteria manifestations' that they require.

Dave

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Thanks Dave - yes, it is quite a unique criteria, but I think there should be some cases who will come forward.

On a completely different matter, I'm attending the meeting in Bath on the 8th April so hopefully will be able to finally meet you in person, as well as the lovely Daniella. x

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Hi Kate

Yes, it will be great to meet you in person, at last, in April.

I am going to try to get my GP to come to the meeting, to give a GP's perspective.

I will try to deal with my subscription renewal, shortly, I have been snowed under with work recently.

Dave xx

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Great idea about getting your GP to come along. The only problem is they are just soooo busy these days (a real GP shortage is heading our way unfortunately) - but fingers crossed as that would be a brilliant insight.

It will be great to meet you too, and no hurry on the renewal :)

Kate xx

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I agree.

Thanks Kate.

Dave :) xx

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Hi Kate

I think I probably match the criteria listed and would be interested in helping if I can.

Hope your well

Kind regards

Danny

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Hi Danny

I'm well thanks apart from the crumbling spine! Hope you're OK at the moment?

That's great that you may fit their criteria - please do drop them an email as soon as you can so you find out: clinicaltrials@alxn.com.

Good luck!

Kate

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Kate I will do that I'll just need to check platelets with rheumatologist although I know when I had my CAPS episode I was treated to numerous plasma exchanges which I think are for low platelets. I've also got weird 'socks' of slightly dry supper freckley skin!! lol

Danny

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Hi Kate and thanks for putting this on, I have tested positive and have a low platelet count (27 last week which has pretty consistent for a long time now). My current Haemo has put the low count down to ITP rather than APS despite my positive test, I'm currently waiting to see a Specialist in APS so maybe they'll have a different perspective, it will be interesting to have their thoughts.

Thanks

Andy

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Hi Andy - wow, your platelets are really low aren't they?!

That's one of the biggest paradoxes of APS - that we can have clotting AND excessive bleeding. Have a look at the charity website to read more about it: hughes-syndrome.org/about-h...

Unfortunately, the ITP charity do not seem to be aware of any crossover with APS. We invited them to have a stand at our Patients' Day last year, and were told in no uncertain terms that the conditions had nothing to do with each other!

However, we do know that's not the case for a minority of people. I hope your APS specialist can help you, if not, Prof Beverley Hunt at Guy's & Thomas' in London has a lot of experience in this area.

Kate

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What are the APS skin problems? Having skin problems at the moment ...could be. My Lupus ,Sjogrens, lichen planus ...APS? Or SOMETHING NEW!!

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Hi Donna - I'm not sure but you could be a candidate. Probably best to drop Alexion an email and ask them: clinicaltrials@alxn.com. :)

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