Sticky Blood-Hughes Syndrome Support
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Ablation , Riveroxaban and neurology

It has been a while since I wrote a post catching up on here, Glad to see everyone seems to be getting great treatment regarding their Hughes. At the start of the year I was put back on Fragmin injections as it was thought I had a suspected PE ( Anad E sent me home and I was scanned then 5 days later to see if it was a PE, not the best treatment to be sent away from A and E but it was a friday evening so i am afraid it was more a case of not enough bodies around to treat people)

I had been suffering terrible pins and needles on the Riveroxaban, so I have carried on injecting for 6 months to see of the problems have alleviated, unfortunately the pins and needles are still very bad and the sight in my left eye is still blurry So I am awaiting to see a Neurologist now

I went back on the Riveroxaban on monday, it is such a relief to not be injecting daily anymore!

Nearly two month I also had an ablation as I have been suffering terrible heavy periods and bloodclots, the operation was a partial success as the bleeding is a bit lighter but it wasn't the result the specialist was hoping for. I can have another ablation but I intend to see what the next 6 months turn out like, rather than going through another op. I definitely don't want a Hysterectomy at 35 so I intend to put that one off for as long as possible.

This isn't really asking a question in this post just seeing others experiences. My memory has deteriorated greatly and the pins and needles are a daily nuisance, so I am just looking to see if others have had experiences of this?

Best wishes


7 Replies

Hi there

Thank you for updating us and I'm sure other will share their experiences with you soon.



Thanks for the up date, it does sound a good idea to recover from this procedure for a while, before possibly embarking on the next. Do make sure you tell them if your symptoms continue the way they are as sometime medication need fine tuning. Let us know how it all goes. MaryF


Thank you for the well wishes. I am hoping the neurology appointment comes through soon, at least I know then what route to take next:)



I can only say that I had also neurological issues and TIAs and doublevison and lost partial sight in one Eye for some minutes. Pins and needles also of course.

I had at first two Neurologists but when I got my Specialists (Rheumatologist and Hematologist) I was anticoagulated and those symptoms disappeared. We have found here that the Neurologists do not "get" what APS is about - too thick blood. We need a proper anticoagulation if we have got APS that is. My neurological issues were caused by a lot of Micro-embolies. They do not show up on an usual scan of today.

Best wishes from Kerstin in Stockholm


Thank you Kerstin for the response. I shall let you know of the progress once an appointment comes through from Neurology


I haven't experienced the pins and needles but I did have an ablation many years ago and haven't bled a drop since. Do you know if they did the ablation procedure with the thermal balloon or manually scrape the endometrial layer out? The first time I was scheduled for it, I awoke in the recovery room and my gynecologist informed me that they couldn't do the procedure with the "gun" that inserts the balloon because it wouldn't fit properly. Apparently, my uterus is small. Who knew? I had to reschedule it for the other method.


The procedure was with the thermal balloon.

The pins and needles seem to be getting worse so I am hoping the appointment comes through soon to see Nuerology


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