Blood Clots and Weggies

[Sangye]

I'm starting this thread because it's so important for all of us to be educated about blood clots and Wegs. A famous study (WeCLOT) found that Weggies are 23% more likely to develop clots than non-Weggies. They don't know the exact mechanism but suspect it has to do with the generalized inflammation of blood vessels. Another huge study in 2008 confirmed the WeCLOT results.

Most docs will know to look for clots in patients with certain autoimmune diseases that are well-known for their predisposition to clots. The patients are usually well-educated about the risks and signs. Since Wegs is not on that list, ER docs and regular docs (ie non-Wegs specialists) often don't know about our increased risk.

I got clots the first week I was diagnosed. I was in the hospital on massive pred with hemorrhaging lungs. I got up to use the bathroom and my calves went into full tetany (full muscle contraction) as soon as I stepped down. I knew it was clots. We did an ultrasound within the hour but it was negative. I was discharged 5 days later and remained in crippling pain for 3 weeks. I was told to walk around and take magnesium. I was almost fainting from pain and an indescribable sensation of dread. Three weeks after they started, I had so much trouble breathing I demanded a chest CT. My pulmy thought I was nuts-- my pulse ox was 100% (at high altitude, despite lungs hemorrhaging and being on oxygen), and my lungs sounded clear. He did a CT of legs and lungs-- I was totally packed with clots. We have no idea why none went to my heart or brain. NONE of my original docs knew about WeCLOT. They were baffled as to why I got clots.

Clots in the legs are called DVTs (deep vein thrombosis). When they break off and travel to the lungs they're called PEs (pulmonary emboli).

Here is info about symptoms, diagnosis, etc....

Some facts about clots:
1) My JHU Wegs doc--Dr Seo-- has said that the highest risk occurs when Wegs is active. Clots can ALSO occur when Wegs is in remission.

2) Weggies can get clots even if they're active, and even if they're on massive doses of pred.

3) Clots don't always show up on the first leg ultrasound. Ultrasound techs have told me it can take awhile for clots to "organize" enough to be seen on US. Many docs don't know this. If your symptoms persist, ask for a repeat US.

4) Even if you're on coumadin, you can still get clots. Either the coumadin is not enough to keep one from forming or your INR goes too low and a clot forms. (INR is the lab test for measuring clotting time) I got new clots in less than 3 months while on coumadin.

5) Weggies who have had clots may need to stay on coumadin for life. Here's one place where our Wegs docs may not have the best answer. You must see a highly-skilled hematologist to make the call. Dr Seo thought I could go off coumadin as long as my ESR and CRP were okay and Wegs wasn't flaring. But he sent me to the chief of hematology at JHU for his opinion. He said no way-- for life.

If you only have 1 DVT, your risk of future clots is higher. But if you developed a PE, your risk is MUCH higher. Also, anyone who gets clots is automatically tested for genetic factors that predispose you to clots. I have a partial gene, which makes me only slightly predisposed. So for me, Wegs + tons of DVTs + tons of PEs + heterozygous Factor V/Leiden = Coumadin for life.

Okay, I'm going to save some info for another post. This is long enough!

[JanW]

Sangye - did you start the thread about supplements and I missed it?

[Sangye]

Not yet! I was in bed most of yesterday.

[Col 23]

Thanks Sangye for the informatio on clots. Very informative, awareness and constant education appears to be the go with WEGS. Maybe I didnt want to hear it- but reality is what it is with WEGs. One day at a time and continued/constant monitoring of ourselves. Every day I wake up I think, how am I today. Mentally getting my head around the fact that I have a chronic illness is still difficult for me. My new normal as you guys describe it, still doesnt sit well.
Col 23

[Brooke]

Thanks Sangye~
I was not aware of this.
I had a DVT when I was 18 years old in my right calf. I am now 29 years old and knock on wood, have not had another one. I have a protein s deficiency and I was also on the birth control pill back then.
Do you think it could have been Wegener's way back then? I had no other signs of Wegener's, not until I was about 22 years old.

[Sangye]

Brooke, please make sure your doc knows about your history of DVT, protein S deficiency and the incidence of clots with Wegs. You should definitely see a good hematologist to evaluate whether you need to be on blood thinners as a prophylactic. They'ill determine how high your risk is, and how much the protein s deficiency contributes. I suggest you see a hematologist at a major teaching hospital--they're the most up-to-date on things.

Before I came to JHU, the other hematologists I saw were too afraid to do anything. One at Mayo Arizona said I'd need to stay on Lovenox for at least 5 years. Never mind the fact that Lovenox destroys bone at an alarming rate. And never mind that 1 shot per day costs almost $6,000 a month!

My JHU hematologist said it wasn't a coumadin failure, that coumadin was much safer than Lovenox and that I needed to be on it for life.

[Sangye]

Female Weggies who are on birth control pills should definitely see a hematologist to evaluate your risk of getting clots. Gynecologists obviously know about clots, but they don't know about Wegs and clots. A hematologist can order blood tests for inherited genes that predispose you to clots if you're on birth control pills.

[Brooke]

I can never be on birth control pills again, due to my protein s deficiency and clot. I was only on blood thinner for a while, a year maybe? They said if I were to get another clot, then I would be on a blood thinner for life.
Of course, I was on a blood thinner during my pregnancy in 2006 as well.

[pberggren1]

So Coumadin and Lovenox are blood thinners?

[Sangye]

Regarding blood thinner management:
When I was first put on coumadin, they said I had to eat the same amount of high vitamin K foods each day, no matter what. It was extremely difficult and stressful. The hospital coumadin nurse and my docs all insisted that this was the way it was done. And if you research it online, you'll find countless recipes for how to live like that. When my JHU hematologist put me back on coumadin, he said that way of managing it is totally outdated. They know the healthiest foods are high in vitamin K. All the veggies that prevent cancer are, too. So to limit them is ridiculous.

He said the new way of managing coumadin is that you eat your usual diet and they increase the coumadin to suit you. Most people don't vary their diet much over the course of 2 weeks, but they do vary it day to day. Right now, I eat whatever I want. I eat lots of high K veggies and don't worry about it, since there are days when I don't eat any K at all. I stay mindful of it, but it takes very little energy and really no stress.

He also got me a home INR tester--larger than a blood glucose meter but also uses a finger stick. The finger stick is a bit deeper because it uses more blood. You test once a week and can adjust your diet and/or coumadin accordingly. It keeps it from going way off track. And, no messing up your veins. They're as accurate as a vein stick, but because they're new, you can expect many docs to tell you they're not as accurate. My hematologist and I did simultaneous finger stick and vein stick and got identical results. Medicare covers them if you have a history of DVT and have been on coumadin for at least 3 months. Most insurance follows Medicare rules.

Between being able to eat what I want and test at home each week, I'm a happy camper. Coumadin isn't running my life.