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High Factor VIII (8) Blood Clotting Disorder and its Impacts on life
I was diagnosed with HIGH Factor VIII (8) about 1 year ago after having a LL leg DVT and 3 pulmonary embolisms. I'm female, in my mid 50's. I had my first mid large pulmonary embolism at 42, but never found a reason, thought it was because of birth control pills (apparently there was no Factor VIII test at that time?) So when it happened again, even though I had an injury (fall) and then flew back to the US from Europe. they said they thought it was more than just that, as it happened before in my 40's, so they ran genetic blood tests and found I had HIGH factor VIII. I was started on Eliquis 5mg 2 x day (had a few side effects but not earth shattering) and after the appropriate amount of time have now been reduced to 2.5mg 2 x day with some of the side effects also reduced with the lesser dose.
First off, is there anyone else out there with this gene? It is SO hard to find a lot of quality information since they have two blood disorders one with low factor VIII and one with high factor VIII. I SO wish they would have names it something else as there is too much info about the other that drowns out all of the info on HIGH Factor VIII, I have had to go to medical journals and studies for the most part, not exactly patient friendly, but luckily I have some experience reading these things from my previous work.
My Hematologist said if I contract COVID-19 due to my over clotting, I will most certainly not survive. Has anyone else been told this? It is extremely sobering and quite life changing. I have not been to a store, with people, or anything since March 2nd. Will I ever be able to see my Mom again (who is quite elderly) or either of my adult children if I'm able to travel to where any of them live without being masked, outdoors and very socially distanced? Will I ever be able to hug them again (obviously once their is a vaccine, but I also know that may be quite a while off). Will I have to miss their weddings, birth of grandchildren, etc.... because the risk may be death? This also greatly effects my husband as he is staying in to the same degree to protect me.
I would like to know others experiences, if you have been told the same information as me, and just any sharing regarding this disease that you would like to share. Like what drugs you take, have you had any more events?
I'm doing everything I can to be healthy (losing weight, down 20 about 20 to go), I exercise every day, walking, running, and/or a cardio mix, but beyond that I'm not sure what else I can do to lessen my risk.
Anyway, looking forward to hearing if there are more of us out there. Thanks in advance, Heidi
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thank you ! i’m 2 1/2 weeks in am feeling better and it is getting easier
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1 ReactionHi
I have factor V. I found out about it because I had a blood clot in my right arm. I was taking tamoxifen and in my fourth year. My Oncologist and Surgeon felt it wasn't the tamoxifen that caused the blood clot. So they found factor V.
I am taking low-dose aspirin.
They told me it was genetic and my son should be tested.
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1 ReactionI also have the disorder of High Factor VIII. I had a bilateral pulmonary embolism occur in Oct.2017. I was released without oral anti-coagulant and had another a few days later. Fortunately I survive it as well and was placed on Eliquis, 5 mg tab 2X a day for life. My Factor VIII level was measured at 256 pica units when it was diagnosed by my Hematologist/Oncologist. I have had one other cot in my leg after a foot injury from falling wood. Can you tell me what side effects you have experienced from the Eliquis? I have had stinging and itching on my in my finger tips at times.
Hello @ptree and welcome to Mayo Clinic Connect. I was able to find this information on Eliquis that may be of help to you.
-Eliquis Side Effects:
https://www.drugwatch.com/eliquis/side-effects/
Members like @afrobin @schaffneka01 and @mayofeb2020 have recently discussed Eliquis and their experiences and may be able to provide you with some additional feedback.
Have you shared your concern with your doctor?
Yes, my doctor he said it seemed to be a minor problem for the protection it offered me. . My son is 39 years old, I suggested he be tested for this disorder. His doctor said his results did show higher than normal levels of Factor VIII. They are following him for now, no treatment suggested as yet. Thank you and Mayo Clinic very much for this area to share.
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2 ReactionsAlso, I was living at an altitude of over 5000 ft. when I had my BPT.
Correction, over 3500 ft altitude...
I also have high factor VIII, found after strokes…xarelto has worked great for me. Did your dr. state why you would not survive COVID with high factor VIII? I have never been advised of this….
I have high factor VIII, huge gluten issues (as do 2 of 3 of my children - one diagnosed with Hashimoto’s at 16)…
@kathiemk i was told that prior to the vaccine being available for me and as you know lots has changed since the early days of covid in what we now know too as well as having treatments that are also available now as well. I am still being careful with the delta variant out there and I do plan to get a vaccine booster when available. My current hematologist thinks I should still practice safe measures but is not as concerned that I would not be able to survive as my previous one. But again my original post was early on and pre vaccine so hence some greater concern at that time.