Sticky Blood-Hughes Syndrome Support

Feeling frustrated

Damn i feel like im banging my head against a brick wall, i dont know where i stand, i have the emergancy heam consultant saying i have a possible varient strain of aps, i have a consultant who's attitude stinks he basicly said warfarin isnt working for you anymore we dont know why i dont think fragmin will work long term for you but because you have been on it before and know how to do self injecting we are going to put you on that at the end of the month, and let you get on with it my gp and pharmasits has said no as the pct dont allow the use of self administered clexane injects in the community anymore,they are dubious about aps even though i printed loads of information off and gave them the book i recieved for becoming a subscriber, my speech seems to be getting more jumbled, headaces and tiredness are getting me really down, i mentioned to them that i keep getting small dark red blood from my nose they jusst said you probebly blow your nose too hard.....what it would be fresh red if that was the case wouldn't it?????

Sorry for ranting but my poor hubby is feeling the strain he is very supportive and has stuck up for me with drs he asked them to up my dose of night painkillers and daytime painkillers as im really struggling with my back i have done for two years xrays showed a pelvic tilt and a twist in my lower spine but when i went for the mri the woman manipulated my legs using blocks despite my crying in pain the end result was the mri showed no problem urghhhhhh my gp has said theres nothing he can do i have asked for a referral to st tom's butim not holding my breath.

Hope evryone is doing ok today or as well as can be


8 Replies

Hi there, any chance of you pushing a little harder to bereferred to St Thomas' or as I did taking a one off to see Professor Hughes privately at London Bridge. I know this is hard, I had a ten year fight... but it was worth it, and now is quicker for other people. The difference it made having him on board for the referrals, eased that appointment in London, both for myself and daughter. As the right team will fine tune teams not up to scratch with modern attitudes or education! Mary F x - sorry you are having an awful time. Push and push for that referral.. get your GP on side, I see above you have already asked.! don't stop...


Thank you mary, i will keep trying to push for refferal, there is no way i could manage to go privately unfourtently, we havent even had a holiday or weekend away in five years.


Yes.. Some manage to do it as a one of appointment armed with NHS tests to save money, but I do understand. It is difficult. Keep pushing and keep calm. x


Hi Becky. Where do you it the UK and if so which county? I live in Kent, and my situation is very similar to yours except I AM self injecting Clexane and have been since last October. Your PCT don't allow self injecting - my PCT won't supply a sharps bin big enough to take my needles! I have had to get a 11 litre hospital one from my Haematologist, and also got the drug company to send me a two litre bin from them!

My Gp knows that I need to see an opthalmologist about my dry eyes, neurological psychologist about brain effects from my stroke 2 and a half years ago, dermatologist about my sun allergy and hair loss and I need the tear in my knee, the gallstones and the enormous fibroid seen to, which have all been diagnosed but no treatment given. He mutters about the Budget, and I suggested that if he referred me to St Thomas' we'd get some answers from 1 place - if it's all related to Hughes, treat the Hughes not every single element of it. I thought that would save his budget, but he wants me to see if my Haematologist will make the referral...on their budget!!!

Wish there was something we could do to raise awareness with medics.

Just know, you are not alone, it helps me to come on here and know I'm not weird or making it all up! Take care, Larraine x


Angelpaws, have contacted your local council for a sharps bin, they have a legal duty to dispose of sharps safely, whereas the PCT doesnt. They should supply you with one and dispose of it as well. They prob wont give you a big one, mine is delivered/colllected bi-weekly since I have been on Clexane.


Can i ask how long you have both been on clexane for?

I am in greater manchester, uk, im glad you find the site so hopeful, it does give me a small spark of hope and allows me to vent lol

Becky x


I live in Northampton and i give myself the celexne injections. My anticoagulant team were only to pleases for me to do it myself. But i have a issue with a sharps box too. No one want to give me one. Just told me to put the cap back on the needle and then put it in the bin! But my gp was happy to give me a small sharps box, about the size of a biscuit tin!


Hi all

I have converted from Warfarin to 15,000 IU Fragmin self injections, recently, after seeing Prof Hughes. I have always kept 5,000IU Fragmin shots for emergencies when my INR has taken a tumble.

I live near Bath and I have no trouble with my GP or PCT in being prescribed the shots or a 1 litre sharps box, which I drop off at the GP's when it is full.

Good luck



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