Sticky Blood-Hughes Syndrome Support
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Should I expect this from Clexane Trial (APS)?

I'll try to keep this short but, I'm a little stunned by my whole experience I feel I may have to pinch myself to see if it's real.

I've been put on a Clexane trial - 0.6 injections + 75mg asprin per day (S-APS). I don't find the injections that painful and the bruising is a very insignificant price to pay for hope.

The first couple of days were like I had new limbs, everything felt different. My symptoms had already started to improve after such a short space of time, is this normal? I could think and coordinate better. I had these strange travelling pains, deep in my skin.. it started in my elbow, then it was in my leg, then knee. All I can describe the pain as is I once had a very painful injection deep into my wrist, it felt similar to that. Those have gone now however I do get the occasional small (2mm) lump in my knee which then turns to a bruise and goes away - I've only seen this happen before when I was thrombolysed last year. If I stand for long I get some small bruises in my knees too but that's really not a worry. The 3rd day I got a horrible headache that lasted all day.. then went away and came back a few times but since then it's not been a problem. My tinnitus has changed sound, it's there all the time but it's quieter. My legs hurt less, less electic shocks, less muscle spasm. My facial rash has improved significantly. I still get a couple of small blister-like craters appear but before they really burned and stung. I'm on the third week now and I'm able to be more active during the day and actually do things without bringing on an attack. I have Reynauds also, so the cold days have been much more unpleasant, but not as bad as they were. My leg circulation is seemingly improved too, there is hair starting to grow again where it had stopped (sounds yuck I know). I almost cried the other night because I did a whole day of general house stuff and.. I managed it! Sounds so stupid but it means there is hope of a life.. and job and future! Other things have improved also, my abdominal pain and digestion for a start. All my other general symptoms from the conditions I have just seem 'lighter' but more defined.

Basically I wondered if this is 'normal'? I have this slight fear that the Dr's that have been trying to convince me I'm mad are right and the syringes are just filled with water.

Oh, one more thing, the tingling/static sensation across my nose has not improved at all however, I'm not sure if this is related in any way.

Thank you for reading this <3

6 Replies

All sounds quite normal to me actually. Everyone is different and their reaction to a Heparin trial will be too. However most people that are going to see an improvement in symptoms usually do so in the first few weeks and it seems you are doing the same. It may be that dosing may have to be fine tuned but you seem to be making progress - well done.


Hi there, I am guessing your medical team/doctor is keeping a close eye and you come up o this medication, but it all sounds as if it is going in the right direction for such early days. Well done. Mary F x



Yes, I found the same thing when I trialed Heparin and this continued on Warfarin, for 7 years, but then I seemed to get worse again. I'm now on Heparin for life and feel much better than on Warfarin.

Best wishes.



Great news. I have twice experienced the miraculous effects of heparin .It was lovely to read your detailed description of the changes you are experiencing. I think you should pass this on to your doctors. I would recommend taking things steadilly and increase your activity gradually. I think that the sensations and changes are because your blood flow is improving throughout your body. Its so good to feel better isn't it? So pleased for you Ann


So great to hear this! I too felt like a new person within a few days of starting Clexane in Feb last year. I later downgraded to Plavix but my symptoms returned so I'm now back on Clexane long-term until I'm living somewhere they can start me on warfarin. Prof K says he has patients 10-15yrs+ on Clexane - the injections are a minuscule price to pay (unlike the financial price of them...) for feeling so much better. Do keep a record of how your symptoms change over time, it's amazing how quickly you forget, once you are feeling better. Really pleased for you x


Hello everyone,

Thank you so much for taking the time to respond to me. Your answers reassured me and helped me greatly :) *hug*. I really, really appreciate it.

I had my follow up appointment. We talked about the symptoms and the improvement, he still seemed very keen to find out where I was with neurology (which is nowhere and no one - they passed this all off as anxiety) and when my last MRI was etc. This concerns me a bit as I wonder if I'm just going to get piled back onto neuro. However, he then went on to talk about medication and longer term treatment as he believes this is seronegative. I wasn't too keen to stop the clexane to test what happens just yet or go onto the warfarin so I've got longer trial of clexane for now.

I'm having a very rough day today, my legs hurt a lot, as does my neck. Yet... without Healthunlocked and Facebook I would be in a far, far worse situation and words just can't describe how grateful I am for the communities here. I literally cannot put that into words but.. it's given me the possibility of a life as close to normal as anyone can have with this amount of illness going on. Thank you.


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