Sticky Blood-Hughes Syndrome Support

Heprin Trial

My daughter (aged 21) has been ill for 7 years and variously diagnosed with Ehlers-Danlos syndrome, Fibromyalgia, Postural Tacchycardia, Chronic Fatigue, Functional neuropathy etc. No-one could make head nor tail of her symptoms until we saw the wonderful Professor Hughes (thank you to all on here who pointed us in this direction), who diagnosed Hughes Syndrome and Sjorgens Syndrome. She has been on a trial of Plavix (apologies if this is the wrong name) but the headaches etc continue, so he has asked her to go on a trial of Heprin. She is at university, struggling as her health is so variable. I wondered if anyone could tell us what she should expect in the trial, and anything she should look out for. It is several weeks since we saw Prof Hughes and she still hasn't seen the GP to arrange the trial, and I am sure she is a little scared. Are the needles little ones like diabetic needles, or full sized ones. Is it easy to administer or should she get a nurse to do the first few to teach her how to do it?

Many thanks for help with this, and just for this wonderful website which has got us through many dark times xxx

7 Replies

Hi, I am glad to hear of your progress, injection wise she needs some support get going, I certainly remember as a young woman the support I had the first time around, I seem to remember sitting with an orange practising until the time was right, which did not take long. It will be interesting to see if there is a difference in he headaches! The practice nurse needs to help her! MaryF

1 like

Hello Floss and welcome.

I have Primary APS and went to see Prof Hughes in 2002. He tried me on Plavix and then on Fragmin (Low molecular weight Heparin). As that worked I was then on Warfarin for 10 years but I am now back on Fragmin permanently.

I was shown how to inject myself by the sister at my GP surgery and I have now been doing it for nearly three years, every morning. The syringes are normal size needles. The benefits really do outweigh the injecting and I soon got used to doing it.

Best wishes.



Hi floss,

I've been on heparin several times for different reasons. They are normal sized needles but once you get past the mental block about sticking something in your own skin it's actually easy to do. The nurse at my practise showed me how to do it the first time then watched me do it the second time and after that it's been fine.

Just as an aside when I'm taking it, I'm prescribed Clexane which my pharmacy gets in. The ones they stock have a kind of sheath around the actual syringe and needle and when you click the plunger in it automatically releases a cover over the needle which then withdraws it from your skin. I found this so much better than traditional needles, for some reason (possibly the angle the needle comes out of your skin) I don't feel a thing when it retracts. They look like this:

I wish I could be on it permanently (it's a conversation I need to have with my rheumatologist at my next appointment) as I find my symptoms are so much better on heparin than warfarin!

Good luck to her, I hope she finds it helps!


I was shown how to inject by the nurse and then managed to do the rest on my own. I found that if I injected slowly I didn't bruise as much. It can sting a little if you inject too fast if it does stop wait till it stops stinging and then inject the rest slower. I found my sides more comfortable than the middle of my tummy (but it may have been mental as I was pregnant and so didn't want to inject in the middle). I think the thought is worse than the reality and I am sure she will be fine . The people on here really helped and different people have different tips so it's finding what works best for her x


I injected fragmin last year during my bridge from and then back to warfarin for my hip surgery. Well said -- that the idea of injecting is much worse then the reality. The advantages of the injectibles over warfarin are numerous: no dietary restrictions, no blood draws. The doseage you see is based on body weight --- which is a lot more steady then the particulars of our diet. With warfarin one must do the mental calculation of which possible food for breakfast, lunch and dinner could thin my blood? Which of these will thicken my blood?

"Oh! What a lovely looking casserole at the church pot luck dinner. Your grandmother's secret recipe? Yes I'd love to try it. But you say it has cranberries? and kale? Would you mind my asking how much? Oh. Thank you. A 'bunch' of kale you say? . So . . . hummmm. . . that would mean about 1/8 of a cup in one serving? But what about the cranberries? Were they raw cranberries? or already cooked? Did you also use cranberry juice inn the roux? Sorry. I dont mean to be rude and noisy but I have these dietary restrictions, so . ."

LIke I said. Injectibles can be a lot easier to handle.


I have been injecting clexane for about 5 years. It changed my quality of life significantly. Yes I still have symptoms etc but nowhere near as bad. It is easy to do once your shown, sometimes it really hurts if you hit a muscle, but mostly it's ok, but it's much simpler than Warfarin. No diet requirements, no blood test trips every week!


Thank you to everyone who replied - the trial was a huge success. She found the clarity of her thinking the most dramatic difference. The benefit wore off for her after 6 hours, which was a bit grotty but overall she loved it. She reluctantly agreed to go on to pradaxa, but found all her symptoms returned so she is going to go on the heparin full-time, maybe splitting the timing if the 6-hour 'drop' continues. It was such a huge help to read about your experiences, especially as she had no support from the surgery - simply given the sharps box and injections and sent on her way. As you say, the thought of it was way worse than the reality and she only bruised once!

Thanks again - so good to have this forum to turn to,

Best wishes,



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