APS/Hughes and Factor V Leiden

Hello everyone! This is Gilda from Palm Beach Gardens, FL, anyone else on here from the States?

My question to the APS group is whether any of you have also tested positive for Factor V Leiden? I have been on warfarin (Coumadin) for 15 years (after DVT's, multiple PE's and positive Factor V Leiden). I recently was also diagnosed with APS and my rheumatologist has added Plaquenil to the mix. According to him and my neurologist, that should further help fight the clotting, the painful joints and flare ups and my fibromyalgia.

I also have had TIA's and suffer hemiplegic migraines. Although better controlled just now, this summer was horrendous with never ending thunderstorms which are a trigger for my migraines. I have awful varicose veins and circulation in my legs, my ankles swell, I am cold intolerant but yet get hot and can't sleep when my fibromyalgia pain flares up.

I use Lovenox as a bridge from warfarin when getting ready for any invasive procedure such as oral surgery or a colonoscopy. I also have IBS and recently had a bout of intestinal bleeding and acute pain which lasted for four days. Had my INR checked at the hematologist (finger prick method) and vein drawn CBC with Diff and Sed rate. Hemaglobin was within normal range, INR was 1.4 (weird!) and white count a little elevated. Maybe I just had severe gastritis? Anyway I have an appointment with the gastro specialist on Monday so dreading another colonoscopy in the near future.

That's my story.....curious to hear how many might have similar symptoms or the Factor V Leiden.

Thanks and happy and healthy 2016 to all!!!

9 Replies

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  • Hi and welcome, yes many people from the USA are on here probably some not too far away from you. Also some do have Factor V Leiden. I enclose a paper for your to read: rheumatology.oxfordjournals...

    Regarding IBS many of us have given up gluten, a common sensitivity in those with Hughes Syndrome.

    hughes-syndrome.org/about-h...

    rheumatology.oxfordjournals...

    It is very important if you have any form of bleeding that you go and see your consultant.

    I will also say that the trio of disease is Hughes Syndrome/APS Sjogrens DIsease and a Thyroid problem, often the Fibro turns out to be Sjogrens and Thyroid, the TSH is often the only test done for Thyroid which is not very reliable, however there are other tests that can be done to detect it.

    MaryF

  • I'm a member of the Factor V Leiden Club.

  • I'm in Australia but also have APLS, FVL, fibromyalgia, migraines, IBS, multiple food intolerances including gluten and dairy and several allergies and probably a few others things I can't remember.

  • I am from Wisconsin and don't tolerate cold either.......I know, bad state to live in if I'm cold intolerant!! Some day I'll come down to the warmth! I have APS/Hughes and "Hashimoto's thryroiditis" also Stage 3 Chronic Kidney disease that started at age15 (Urologists never did dx that problem...), tested negative for Sjogrens. I don't know anything about Factor V. Will have to read up on it. All I can say is it is such a blessing to have this group to come too and know that I'm not the only one, and that you all are supportive.

  • Hi, have never posted before. I'm from County Durham, England. I have APS/HUGHES since 1972, not diagnosed until 2000 when I had a mastectomy for breast cancer. I also have Sarcoidosis, Neuro Sarcoidosis, Nephrotic Syndrome, Hypo-Plastic left kidney, arthritis and many more to mention but in answer to your post I have FACTOR V. Not sure of significance to APS as I don't see any Consultant for either. I am also intolerant to cold yet seem to heat up very quickly if I am out and about no matter what the weather. I'ts a mystery.

  • I too have tested positive for APS and Factor V Leiden. No major clots though, but a lot of symptoms that have disabled me. Brain fog, concentration issues, balance issues, fatigue, pain, migraines, twitching. There specialists have seen do not want to risk anti coagulant since I have had no major clots. On aspirin only for now.

  • Welcome! I'm also in the states, Washington DC. I was diagnosed with APS back in 2005/2006 after I had complications with open heart surgery. I got nicked in my carotid artery while the anesthesiologist was inserting the central line for anesthesia. I had a strange bleed (oozing) and developed a large hematoma in my neck that was evacuated by a vascular team. Hematology did a work up & I got the APS diagnosis. They went back and forth as to calling it APS since some didn't consider the hematoma as a clot and therefore I didn't meet all of the criteria for a clotting event. They also claimed my antibodies were affecting my Factor 11. I did 3 out of 4 rounds of Rituxamab to target those antibodies with no results. To the doctors it appeared I had a clotting AND a bleeding problem. They were trying to come up with a plan to get me through heart surgery. They mentioned there's a Factor 11 product available in Europe but not the states. Fortunately, DC has wonderful major medical centers. My doc sent me to see the head of hem at Georgetown University Hospital to get another opinion. The blood work done in Georgetown's lab, eliminated the Factor 11 concern. For some reason the two different labs were getting different results. As you know many docs and hospitals send blood samples to an outside lab. The in-house lab had better results. I've been on Coumadin since. It was really hard to regulate my INR in the early years.

    Cheers!

    Lisa

  • I live in Palm Harbor, Florida on the west coast. I've had many of the same issues as yourself. The pain has become so severe in my legs and ankles, that I can barely walk now. I'm 58.I don't think they ever tested me for Leiden factor. I'm on Facebook (Pamela Gardner) if you ever want to message me. Feel free to anytime!

  • Hi Gilda

    I also have Factor V Leiden and APS. Have had DVT several times, the last time had 3 at the same time in 3 veins in same leg. After the last 4 month round of Coumadin, had extensive tests by a hematologist almost 2 years ago, and diagnosed with both. I'm on Coumadin and self test each week. Also was just diagnosed with a brain aneurysm, which has nothing to do with the 2 blood clotting conditions, but because of them, my hematologist spoke to the neurosurgeon and they decided that to do surgery to correct them, ( which was scheduled, then cancelled) I had to go off Coumadin--10% chance of stroke doing surgery, and 1% chance of aneurysm erupting if nothing done at this point. So, they opted to watch and periodically test with MRA to see if it grows--If so, then surgery is warranted.

    According to research, you are born with Factor V (I have it heterozygous, meaning one copy of the gene from one parent) but APS is acquired, but they don't know how at this point.

    I've had all the symptoms of Factor V my whole life, but this syndrome was first discovered in 1994. Migraines, miscarriage, blood clotting, etc. Now at least I know the reason why.

    I wish you luck...By the way, I also live in the States, Monroe Twp., New Jersey

    Mozelle

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