Warfarin (Coumadin) Success?

[sheshells]

I'm currently on Xarelto, but investigating whether or not folks who take Warfarin/Coumadin get relief from APS-associated symptoms -- like tinnitis, memory issues, joint pain or halting the progression of mitral valve disease.

[Lure2]

Do you have problems with those APS-associated symptoms you mention? Even on Xarelto?

I have always heard and learnt that Warfarin is the best for us with APS.

I have had those symptoms you mention and now lung/heart/valve-issues. Warfarin has been my lifesaver. I was without anticoagulation some years as I was afraid of it as "rat-poisson". Stupid of me when I now looking back.

[sheshells in reply to Lure2]

I've had tinnitus for 10+ years. It started when I had my first and only episode related to my Hereditary Hemochromatosis.

This past summer I was noticing issues with not being able to recall simple words, and just some general brain fog. However, once I started eating the Carnivore diet, my brain fog and word recall improved dramatically. I'm basically back to my old self. And that happened while I was not on any kind of anti-coagulation meds.

I was diagnosed with very mild mitral valve prolapse in 2011. I have it checked every 2 years with ultrasound, and it has not progressed at all. Just want to keep it that way.

[sheshells in reply to Lure2]

I answered this on another thread. You've probably seen it. :o)

[HollyHeski Administrator]

You wrote earlier that you were trying diet to control APS and off the Xarelto?

Have you gone back on the Xarelto?

Getting a balance of anticoageration is hard, but once we get there, yes it helps other APS symptoms. Key here is getting our blood flowing, thinner and non sticky.

Not sure when your constipation started but again getting the balance once upset, either way is hard. Try and keep a good diet with lots of fibre, plenty of water too.

Having PEs before and heart disease, I think trying warfarin would be good for you, you mentioned that your consultant also preferred warfarin?

Have this discussion now with your consultant and strive to get the right balance of diet and drugs that suit you.

[sheshells in reply to HollyHeski]

Been on the Xarelto for 3 weeks. I had a problem with constipation last year when I took Xarelto right after the PE diagnosis. It got gradually better then. Hoping it will resolve this time too.

I'm still eating Carnivore with a little full-fat dairy, 1-2 eggs daily, and a few seasonal berries.

Every now and then I eat a small amount of nightshade vegetables, and I'm thinking they don't agree with me. May have to give them up entirely. Sure will miss Italian and Mexican food!

Hoping my upcoming appointments at Mayo Clinic in Jacksonville, FL will be successful! Seeing docs in both Rheumatology and Hematology.

[Mermaidatheart in reply to sheshells]

I live in Florida and would be very interested to know how your appointments go in Jax! I live about one hour or so south of Jax.

[sheshells in reply to Mermaidatheart]

I'll make myself a note to remember and post to you after I get back. We could also swap phone numbers later if you want to and share info. :o)

Love your "handle" Mermaidatheart!

[Mermaidatheart in reply to sheshells]

Thank you!

[sheshells in reply to Mermaidatheart]

Hi Mermaid! I saw Dr. Marwan Shaihk at Mayo Clinic, Jax, FL, last week. I liked him a lot. He was very easy to talk to. Really sharp. Easy to establish rapport with as well. If I lived closer to Jacksonville, I would definitely consider making him my regular hematologist. SheShells :o)

[sheshells in reply to Mermaidatheart]

Hi Mermaidatheart! It's been a while, but I ended up on this site last night and saw this exchange between us. Wondering how you're doing? Did you end up at Mayo Clinic? All the best, Sheshells

[MaryF Administrator]

Hi, it is so important to have the right specialist to help yourself and your GP manage your symptoms, different medications suit different people, and some times medication has to be changed or tweaked a bit, also important to make sure you doctor looks at your levels of Iron, B12, Folate, Ferritin and your Thyroid, as any of these not being right can make things worse in terms of your existing condition. MaryF

[sheshells]

That's why I'm going up to the Mayo Clinic and seeing docs in both Rheumatology and Hematology -- I have Hereditary Hemochromatosis and APS. I've been watching my Ferritin ever since 2008, when it had climbed to 2000!

[GinaD]

I've never heard of a Carnivore Diet, though, of course, I do know that the definition of " carnivore" is " meat eater." Do you avoid all plants? Or just empty carbs?

[sheshells in reply to GinaD]

If you've never heard of Mikhaila Peterson, you have to check out her personal experience curing horrific arthritis with a Carnivore diet. She and her father, Jordan Peterson, have fascinating backgrounds with auto-immune disease and eating carnivore.

I mostly eat 100% grass-fed, grass-finished beef. Highest in Omega 3 (very important) and nearly everything else nutrition-wise compared to any other animal's meat. And the only true "superfood" is beef liver. (Check it out online.) I can't stomach eating liver yet, so I take a dessicated liver food supplement.

I don't eat vegetables (with the occasional exception of a few onions for flavor). I was occasionally eating cooked tomatoes with some of my dishes, but I think I'm sensitive to nightshade veggies, so I'm probably going to give them up entirely. I eat about 1/2 Cup (8oz) of seasonal berries a few times a week. And I eat modest amounts of full-fat dairy -- cream, cheese, sour cream, cream cheese. I eat loads of real butter (Kerrygold is the best!) for the fat. It's important to eat at least a 1:1 ratio of protein to fat. Consistently eating too much protein isn't good for our bodies. We need fat way more than any other nutrient.

Check out: Dr. Paul Saladino's book - The Carnivore Code

Also Dr. Shawn Baker's book - The Carnivore Diet

There are loads of great information on YouTube!

Take a look at Dr. Nadir Mir Ali - a prominent cardiologist in Texas. His website is eatmostlyfat.com

[GinaD in reply to sheshells]

I too am a fan of healthy fats. But my body grumbles, ( usually with constipation,) if I do not eat enough green leafy veggies or drink enough water. A Cleveland Clinic Functional Med supervised diet revealed I have a cashew allergy. Since tomatoes and eggplants are in that same high histamine family, I take care to never overdue with tomatoes, eggplant or potatoes, ,

[Lure2]

Most Rheumatologists (Sweden) talk of a "stone-age diet" or "Mediteranian diet". I myself follow that.

Curious that you got better from "diet" and not from "anticoagulation" with triple-positivity like you have!! I have never heard of that. Do you exercise also?

Those with triple-positivity usually need Warfarin.

[sheshells]

I try to walk every day - Florida weather permitting. Back in September, I bought a personal trampoline (aka a rebounder) to use indoors. I overdid it and aggravated my knees. I should have known better. I'm in denial about getting older! ;o) Coming up on 70 in 2 years.

I do some bodyweight exercises a few times a week (no equipment needed).