Are there any AF’s out there who also have the blood disorder called Von Willebrands disease. My husband has both but so far is reluctant to take either Warfarin or Apixaban as is afraid of a serious bleed.
I have persuaded him to have a discussion with his GP about this.
If anyone out there is such a person I would love to hear from them
Jean
not von Willebrand’s but I have an unclassified bleeding disorder and am under the local Haemophilia Centre; I assume your husband is too? I recommend speaking to them as well as to your GP. Because of my condition I am not allowed thinners so have instead been given a procedure called left atrial appendage occlusion - which blocks off the section of the heart where clots are most likely to form, and reduces stroke risk by 80%. I have just heard that the CT angiogram to check the situation 6 weeks on from the procedure shows the blocking off isn’t quite complete and I think this means continuing drugs for some more weeks. Nothing is ever simple!
Thanks for replying scrabblefiend.
It is because of the latest check up at his local haemophilia centre that once again the question of whether he should take any anticoagulant or not. Trouble is they give the facts(not easy for the layman to understand) for and against but leave the decision to the patient.
My husband has made an appointment to have a chat with our local GP in the hope that things may be clearer. Must live in hope!!!!
Jean
Hi yes I have Type 2B Von Willebrands disease and have been taking Apixaban for two and a half years. I'm 77 now. I haven't experienced any bruising or bleeding. I am under my local Haemophilia Centre who sanctioned my taking Apixaban and who I can contact at any time if there's a problem .
Thanks for replying B172.
My husband is under the local Haemophilia Centre (UHW) and has just had his annual check up. Once again the question of whether or not to take any form of anticoagulant was discussed. It seems that the consultant will advise but not make the ultimate decision.
So my husband has made an appointment to chat with our local GP. By the way he is Type 2M VWD.
It has encouraged him to learn that you ,also a fellow AF er and Type 2 VWD er is taking an anticoagulant with no adverse affect. Long may it reign.
Jean
Hi JeanThe decision as to whether I should take an anticoagulant was a collaboration between Haematology and my cardiologist. I started on Apixaban at a half dose of 2.5mg twice daily for two months and then increased to 5mg . I have blood tests every 6 months to monitor kidney and liver functions etc. Haematology did look very closely at my blood work as evidently my platelets don't behave how they would expect for someone with type 2B which had some bearing on the decision that it was worth my trying Apixaban. As I said before I have had no bleeding or bruising since I started the medication.
I could go for an LAA occlusion operation if I choose so perhaps your husband might like to raise that possibility with Cardiology .
My very best wishes to you and your husband.
Sue
I don't take anticoagulants because I fear a repeat of my previous spontaneous (ie. unexplained) bilateral chronic subdural haematomas, so I understand your husband's much more serious considerations and his choice.
But you must ask your GP for a referral to experts in Haematology re this if such discussions haven't yet occurred.
All the best to your husband and yourself going forward.
Thanks for replying ozziebob.
My husband is under our local haemophilia centre who will only advise but never decide whether he should or should not take anticoagulants. It seems the balance for and against is pretty level.
He is hoping that a chat with our local GP might make up his mind.
Jean
Yes, I see you have the reassurance of Hawkie147 above, but it seems the recommendation will depend on the individual circumstances around your husband's manifestation of Von Willebrands disease. Good luck.
I had muscle spasms on Apixaban so after a month I went back to warfarin
I have been taking warfarin daily since 2013 and have had 2 life-threatening bleeds in 2008 and 2014. The bleeds were stopped in A&E by the use of the agent Vitamin K which works fairly speedily within an hour or less. I have regularly asked my (constantly changing) consultant about the danger of being on warfarin when having a propensity to bleed. The answer is always the same; with warfarin we can stop the bleed; if you're having a stroke (because of my AF) the consequences are inestimably more life changing. I have had no side effects from taking the warfarin and it's my choice to run the risk of a bleed rather than be unprotected against strokes.
Finally, after the 2nd bleed which took place on holiday in Italy in 2014 I was prescribed a stomach protector by the Italian medics who were shocked that I was not already on them. Hence that would be something to consider as well. Good luck!
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