I was diagnosed in October 2016 with APS. I have a chronic DVT in my right leg. I know my clot is here to stay but I was wondering if anyone has gone into remission or lowered their protein level so they wouldn't need to be on blood thinners? I am currently on Pradaxa and keep hoping my doctor is wrong when he says I will be on blood thinners for life.
Also, I was wondering if exercise or diet change had helped anyone suffering with APS. I love going to the gym but the chronic DVT does make it tougher.
Thanks,
Heidi
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Heidi-B
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Hi, in answer to your question, the disease does not go away, and to come off anticoagulation even if antibodies drop is dangerous. However exercise and diet something I pay great attention to, helps any disease. It is important to also pay attention to your Thyroid, vitamin D, B12 and Iron levels. For myself I am only on Aspirin, twice a day but do take thyroid medication, (NDT), and also LDN, however alongside this I have no gluten, and follow a fully Mediterranean diet rich in fruit, vegetables, beans, lentils, oily fish, and organic meat and sensible amounts of dairy. However as I do not eat gluten I do eat brazil nuts etc. However this approach is not for everybody, as not being on Warfarin I don't have to keep a stable INR. It is important to be under a specialist who understands Hughes Syndrome/APS, to help with this.
In addition I take a whole host of supplements, but again these are carefully worked out, and this is not an approach for everybody. I also have Stevens Johnson Syndrome which can make medication very tricky for me, so the more natural approach is necessary in my case.
I also try and exercise for one hour a day despite my fatigue.
I draw your attention to this medical paper which we featured recently on the forum.
Wow the article was basically what my doctor had told me but I had my fingers crossed that maybe by some slim chance there could be something. Yup I am an optimist.
I try to stay low carb and I prefer The Mediterranean diet over any other way of eating. So lucky my family agrees to healthier eating. My husband has a daily routine of making sure we get out vitamins and supplements.
This site is wonderful and I am so glad I found it. My husband and adult kids are very supportive but it's nice to hear from others who have the same or similar issues.
I was diagnosed with APS in September 2013/ MTHFR(2 muations) diagnosis 2012, been on Warfarin since July 2013 and just had my follow up appt with my Hematologist 2 weeks ago. My APS levels have dropped to almost zero and I'm happy to say that now I am only taking 1 baby Aspirin a day. Maybe I am 1 in a Million and at one point later in life I may have to take Warfarin again but for now I am back to normal. Blood will be re tested in 6 months to see where my levels are. I wish everyone the best !! Oh, my Hematologist said that my APS was caused by age, I am 52.Never had a miscarriage but several DVT's and PE's.
I wonder in what country you live? Your name could be Swedish but I guess not.
Why were you diagnosed with Hughes Syndrome/APS in 2013? By antibodies or by symptoms?
When you have this illness you have it for life and need anticoagulation for the symptoms you have had and may have. This illness may run in families (we know that now) so it is important to look at the family history also.
I do not think your Hematologist understands our illness as the antibodies can go up and down and many here are sero-negative for some time but the antibodies usually come back again. This illness never go away!
I do not like that you have stopped Warfarin as now you can get another clot, DVT, PE or damage to inner organ any time but then you are not protected.
I think you should look for another Specialist who understands that people can be negative for some time but never take away anticoagulation as Aspirin is not anticoagualtion but only an antiplatelet-drug that works in another way than Warfarin.
I must say that I do not know what MTHFR (2 mutations) means but I guess that as you have the Hughes Syndrome/APS-diagnose you need anticoagulation as much as we others here. We are no doctors here.
Hi and Welcome Heidi -I was Dia. 2009 with clots both lungs - left groin and behind left knee also neck and left arm pit area . I now can swim-hike- walk- recumbent bike and treadmill when feet will allow . just nothing with contact and i have to be careful of water temp while in pool{ i wear a light weight suit }. I am getting older in age and not even as active as i was when all this started. I still clot in left leg Knee and upper calf area.I think being careful of falls and getting hit by anything is the most common things to watch. we are all different but this is what i would say to you - here if you want to ask anything.
I use to do crossfit and was getting myself into shape until I had to have 3 levels of spinal fusion almost 3 years ago. I had just started back with my trainer when I was diagnosed with the DVT and APS. I have the same chronic clot but in my right leg and it can put a damper on working out....especially doing lounges or jogging. I do get frustrated about that. I didn't realize there is an issue with water temperature and chronic clots. Is the issue with water being too cold?
Hi Heidi - yes water temp is suppose to be like 85 or warmer , like a therapy pool BUT swimming pools are 81 or 82 so i use that light weight neoprene suit -sounds like swimming would be your best bet also - i do crunches and arm workouts -my muscles also effected by colder water Do you swim ??
Only in the summer when on vacation at a place with a pool. I just have a hot tub at home which my doctor said was okay. I wish I had a pool because I do enjoy swimming.
I will have to ask my doctor about the hot tub situation. I haven't been in there since my husband drained it before the winter and it is still not up and running yet. I have been researching online and you are right there are concerns over water temperatures. For now I will stay on the ground.
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