Sticky Blood-Hughes Syndrome Support
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Just to say I saw Professor Khamashta on Thursday at London Bridge Hospital. Fab man (If I had wanted to see Prof Hughes - the waiting list was 'til February 15).

Prof Khamashta has said I'm fine on Dabigatran - when I showed him my inr booklet for when I was on warfarin - he said I'm much safer on Dabigatran as I was so unstable and nearly alwasy low (about 1.3 - 1.7 over a 2 month period) He is currently testing Rivaroxaban with the team at St Thomas's and so far it's been a very safe option. The only downside is that he suggested it was too risky for me to carry on diving - as he said risk of haemorrhage is higher and if anything happens under water.................... (he also said you can't lower the risk like you can with flying - by wearing flight socks etc)! but not do much to lessen the risk when diving.

But if I just have to give up diving well, so be it. For peace of mind it has to be worth it. He's asking my GP to refer me to him at St Thom's under NHs so he can check me annually (unless something more urgent is needed when I would see him). Re my daughter with CFS/ME - he is also asking our GP to refer her to him at St Thom's so he can test her to ensure it's not primary APS or SLE also - and that it is in fact CFS - due to many symptoms being similar - and she is only 18 so he said it would be good to know for her future.

All in all well worth the £220 fee for a positive consultation. And for info I have been vegetarian all my life (do eat fish as well though). One difference it makes is that it's harder to get inr levels right on warfarin! Although they say diet makes a lot of difference to CFS/ME sufferers - and eating more small meals a day helps with migraines/headaches.

Have a fab weekend all. :)

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Thanks for taking the trouble with the detailed feedback, good to hear of the positive outcomes all round and case of the dots being joined up. MaryF

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Thank you for sharing this information as I am very erratic also on swearing. My consultant does not seem too concerned, but I am.


So sorry monsoon17 - we've decided as a family that it's not worth the risk - and it's all about managing the risk with this disease. I know it's a different world - but I think I'd rather stay in this one. The hospital consultant said it was OK - but specialist said it wasn't and I have to do the best for my family (If I was on my own it may be different - but I'm mum to 3 lovely kids so.....................


Thanks for the update. And congrats for taking such a practical, constructive approach to diving. I sadly gave up mountain biking at my diagnosis ( though I still do recreational biking.)


I can snorkel - not the same but a compromise! So going on holiday in a few hours - shall book speedboat and snorkel session as soon as we get there! x


I was there Thursday too!

Actually I have been meaning to come and update, but have actually been extrememly unwell for about 7 weeks, but have just started a 7 day course (tapering) steroids (thank you Apsnotfab, for your advice) and can feel a bit of strength returning.

I also saw Professor Khamashta and like you, will be seeing him in future at St Thoms . on the NHS

I don,t think he was very impressed with my ditheryness and the fact that I had grabbed a handfull of letters some being the page one only of two and the other way around,but he was very nice

I plan before I see him next to organise my medical letters better (Apsnotfab, you have spoiled him with your medical CV)

Only joking, I plan to try and do something similar when I am feeling better and the teen is back at school

We discussed thyroid issues and he going to test me,so that,s one less thing to ask the GP for.

I had a head CT booked for the following morning and he has asked me to take my results when I get them

Even when well I plan my appts (where possible) on an alternating system, ie appt or big journey or shopping trip etc, then rest,but just the way things went was Wed physio,Thur. London Bridge,followed by head CT at 9.30 at my local hospital.

9.30 is also difficult for me , I don,t usually go out until the afternoon as when I rush about I feel faint and also if I go out early I tend to get on the wrong bus/train etc or forget to get off at my stop.

I actually fell asleep in the scanner! then I got on the wrong bus on the way home and when I got home I felt like I had hit the wall, I already had an appt for that afternoon with GP so I begged for the steroids as I have a long coach trip tomorrow, taking the teen to see his beloved Manchester City play for his 16th birthday present.

I was that dithery in the appt that although he told me what the strange swellings on the inside of my elbows are, I have completely forgot what he said.

I also have forgotten if I am supposed to arrange to see him next, by asking my Gp I suppose to refer me, or whether that is already covered, but as I wont get my CT results until ten days time,there is no rush

I am was just so relieved when he said he would take over my care, on the NHS and would not discharge me , I didn,t take much in after that

So the master plan goes like this

get this trip to Manchester over first

Get better

Get organised (at least with the medical letters lol)

Wait for teen to start sixth form

Phone and find out what I am meant to do next, then do it!


Because I work in a GP practice - I'm versed in taking what I'm told to - so medical cv reasonably up to date. I haven't got many side effects - just had the multiple PE's on both lungs (with pleurisy) - which may have set this off for me (autoimmune system working overtime - as I hadn't seen GP for bad cough - naughty!). Glad you are now organised. Just ask for later appointments - I never have an am appointment for my daughter with Me/CFS - as, like you she doesn't do mornings - we are leaving for Gatwick at 3.15pm - she's still sleeping now (at 12.25pm)!! Best of luck - and maybe we (and crista1) may all meet at St Thom's - the Prof did say there is a gathering in May each year (with about 200 of us) so I shall be there next year! Best of luck on your 'getting better' programme. x


Haha sorry I seem to have set the standard with my medical CV it's become a legend with him now! I was also at London Bridge on Thursday for some Blood tests and an MRI it's a pity I didn't know you were there - maybe next time.

I always say that the £200 is worth every penny for peace of mind! So glad it was for you too! X


The three of us could have had a tea party!

I went to the pub after for lunch (the one by the golden hind) then bought the evening meal from borough market,so it was like a day out :)


The 4 of us (apologies APsnotfab) as I saw your post afterwards - so was crista1 there on Thurs also. Next time - better planning needed - and we can all go to the pub near the Golden Hind and have a day out! :)


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