I don't have anti phospholipid antibody syndrome, but I'm on chronic Coumadin due to multiple pulmonary emboli. It really impacted me at first, especially because I was on the AIP and eating 6-9 servings of veggies a day. I had to cut far back on the amount of greens I was eating to let the Coumadin become therapeutic.

I don't personally have it but my friend who has lupus also has the antiphospholipid antibody. I have always thought it was associated with lupus, but not sure.

Maliroads86 wrote: »

It's a rare one.. Just as rare as the rest but I have yet to meet another that has this. It has all the same issues as all the other ( sle lupus ms ) it's possible they could b the underlying cause. Taking Coumadin food interactions high BP, life style adjustments.. Anyone ?

@Maliroads86 that sounds tough for sure. We have Ankylosing Spondylitis and Lupus at our home and having any autoimmune health issues is so flustrating when it comes to getting health care solutions we find as well.\

Wobenzym came to my mind as a supplement that I have tested extensively for safety. I will add some links about it if you want to read. I took 20 tablets four times daily for a month without any negative side effects that I noticed and now maintain at 3 tablets twice daily since 800 tablets is about $100 (US). It is a product that has been used in Germany for 50 plus years to cut surgery recovery time by 50% I have read. Best of success.

russianpatents.com/patent/223/2232028.html
A method for the treatment of antiphospholipid syndrome

https://groups.yahoo.com/neo/groups/immunologysupport/conversations/messages/46958
Contains links about Wobenzym.

I mention Wobenzym for info only so you can read more about systemic enzymes.

Since Wobenzym is reported to clean the sticky stuff out of one's blood so it flows well again would make its use and Coumadin at the same time a concern that should be checked out with your clinic. I think that is covered on the label.

I'm so sorry to hear that you've had so many struggles lately Lupie, that's a lot of changes all at once!

I've been on Coumadin for two years now, due to multiple pulmonary emboli. (I don't have APS though). I was scared at first too, because I had been eating 6-9 cups of veggies a day, and a lot of spinach and kale. I had to decrease my veggie intake at first, to allow the Coumadin to become therapeutic. Then I gradually increased it.

Here's the best list of Vit K content in various foods that I've found:
http://www.coumadin.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000bxvTFEAY

I think of my vitamin K content in terms of "broccoli equivalents" since I travel for work, and eat out a lot. Most restaurants have broccoli as a veggie I can eat. It's about 225 mcg vitK per cup. So, if I eat other veggies on other days, I'll adjust the amounts to equal 225 (or 550, or however many "broccoli equivalents" I'm eating at that time). Broccoli is considered a "high content" veggie, and that usually equals two servings of a "medium content" food or 4 servings of a "low content" food.

I've run into more issues when I'm dealing with an MG flare-- prednisone, Tylenol, NSAIDs, etc all impact your INR (the level you follow for Coumadin). Plus, I don't feel like eating as much, can't cook as easily, and sometimes can't chew or swallow the veggies due to dysphagia. I bought a vitamix blender to be able to blend veggies truly smooth (expensive, but less than a copay to the ER if I aspirate, and I use it daily during my bad times!). Luckily my Coumadin clinic is staffed by VERY smart nurses, and they're able to predict variations well. I've learned what my symptoms are when the INR is too high or too low, and adjust my eating a bit if needed.

I have the option of home testing, through Alere home INR Monitoring. It's a simple finger prick, like a glucometer, and I enter my result into an app on my phone, which is sent to the Coumadin clinic locally. They call me if I'm out of range and need to adjust. It's SOO much easier than running to the clinic once a week, and much more accurate than once a month testing. Once you're dose is somewhat stable and have learned enough that you don't need face-to-face time with the Counadin Clinic, you might want to look into it.

Don't be surprised if they have you take Lovenox shots for the first few days while your Coumadin gets to a therapeutic level-- it's standard care for most, I don't know if APS is different though.

I don't mean to overwhelm you-- you can always ask me questions later too!

I haven't had any serious bleeding issues, although I'm afraid to use knives in the kitchen when the INR is too high! I have balance issues and some falls, too, I'm really careful to assess how I'm doing and I don't push my limits there. No serious falls since the Coumadin, thankfully. I have a walker I use to help balance on bad days. The mobility impairment actually saves me some falls, I think, because I'm more aware and less active. Before diagnosis with MG, I'd try to push-through the weakness and had many more serious falls and injuries from them.

I tend to bruise more when my INR is just below target level (one would think you'd bruise less then, but that's not the way I work, I guess). I find the "oozing" more annoying than the bruising, like if I get a small abrasion it will ooze for hours. I keep a lot of band aids around. (I have keratosis pilaris aka "chicken skin" which itches a lot, and get little punctuate areas of bleeding with it. Before the Coumadin they'd just be red for a day and go away. Now they scab up, fall off, ooze, scab up repeat again and are annoying). IV sites, lab draws, needle pokes for SCIG infusions are the same way. I do get bruises with these things, but they're usually smaller than a quarter.

I had some monster bruising from a vein rupture during a plasmapheresis treatment, but that would cause serious bruising in anyone.

The high-dose daily prednisone causes me spontaneous bruising too, and they'll get to be a quarter or half-dollar size.

I got monster bruises from the lovenox injections-- my abdomen looked like the pitch black night sky with green and yellow Northern Lights for a few weeks. The bruises didn't hurt though, they just looked awful.

A few PT sessions can give you some expert advice on fall prevention, how to fall safely, stair safety, eval for mobility aides, etc. I found it helpful, even though it's similar to my specialty (PM&R) and I knew much of it, I learned a lot too. I fell down a small hill once in front of a bunch of kids, and they were amazed-- "Wow! Are you a hockey player? That was awesome! That was a perfect tumble and roll!!" A reaction I wasn't expecting