Sticky Blood-Hughes Syndrome Support

Rheumatology visit

Saw the rheumatolgist yesterday. She is treating me for a stroke, even though the scan didn't show up anything and she wants me to have another scan. I've had clots in my brain before although I didn't know it. She said I shouldnt have had these symptoms being on warfarin but she has recently been to an antiphospholipid conference (hooray she's getting more knowledge!!) she found out that APS people can gets strokes even when their INR is close to their range. My range is 3 - 4 and has been between 2.5 and 5.7 the last few weeks so not too low.

At this point I suggested a trip from Devon up to London perhaps might be worthwhile! Rather than seeing Prof Hughes, she wants me to see Dr Beverley Hunt, who I actually saw about 20 years ago when I used to travel up to London to see the Prof during my pregnancy! My doc has sent people to her before and says she knows all there is to know about antibodies! My anti- cardiolipins are measured at over 120 so that's quite high. She is happy to refer me so I've said yes.

Felt exhausted when got back and family and friends wanted to know how I got on. Inevitably, I had a dreadful night feeling so ill, so my poor husband got hardly any sleep and has a full day teaching today!! Still I'm making sure I rest as much as possible.

Thanks for all the support on this site. It has been such a help for me.


7 Replies

Hi Jane, so sorry to hear you are not having a good time at all...or your hubby :(

Yes unfortunetly it is still possible to get many symptoms even if on warfarin, especially if the inr falls below 3, this was something he had stated at the meeting that some of us went to too......he would like all Hughes patients to have an inr at least 3-4.

I think it will be a good idea for you to see Dr. Beverley Hunt as she is very qualified in that field.

Good luck & I hope you both some sleep tonight :) take care & let us know how you get on xx


good morning princess- i agree with your support of a 3 inr- my hemo is trying to lower mine -now range is 2.5 to 3.5. I have to have her on board for surgery or there will be NO surgery . i found a report on inr' s that states that this is a thing to be set one a one patient thing. i will show her BUT only after the surgery. she is pretty head strong rite now BUT she will be in a dicussion with the wild and crazy french man on this , you can bet your crystal ball on that - maybe i'll have all my favorite witches cast a spell on her !!!!!. she thinks she is pretty -up on aps but she is going to get her wings clipped. i WILL go to her well prepared with my reports !! as it is documentated in many articles in the medical field. JANE HANG IN THERE AND MAYBE THIS OTHER DOC WILL HELP!! ------ good luck and keep us posted. -------------------------- jet


hi Jet, I hope you get the support you need over there to see you through all this, I even have a video recording of Prof' Hughes saying the inr range.....think it will have to handed out to all Dr. surgeries!!!

All the best to you bud, keep smiling :)

Let us know Jane how you get on, dont forget to rest tonight x


Hi Janekins that must be such a relief being referred having such an understanding rheumatologist - can i please swap for mine! ;-)

i too have had clots on the brain with further TIA with very high ACL antibodies but my rheumy i saw on tuesday has focused on my dx of fibro!! i might look into paying to see Bev Hunt myself on your rheumy's recommendation...

hope you feel better soon kathy xx


Dear Jane

I hope this finds you well and recovering!!! I have so many pills for the APS etc and Bev Hunt is great, she told me to have as much Vit K and Cranberry and just do what I have been doing. My inr range seems okay touch wood and it is about 3.4, whereas if any higher I get the dizzy feeling with hot heads etc and then below the same. Had the cataracct surg last week and what a difference all down to steroids. A little bit blood shot and loads of eye drops to put in. Next week biopsy for sygroens again although diagnosed before, but maxillo wants another one. I am beginning to get control of the inr range. I had this TIA whilst on Heparin when I had to have major surgery last year although I relayed my fears to haem.

Anyway I felt so much better today went into Plymouth and actually felt I was in control, whereas majority of time I tend to walk around in a daze.

Take care


I am going up in July with daughter (daughter has it too)


Hi Janekins

I have had a clot in my right hip, when my INR was around 4.0 and 'funny turns', which Prof Hughes agrees are likely to be TIAs.

Best wishes.



Hi Jane,

Everyone has said pretty much what i was going to say so all i will say is keep strong and you know we always here for you and never dissmiss anything always check with your doc



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