Blood Clots

[blu4runner]

Has anyone had issues with blood clots? I'm in the hospital wow with clots in both legs getting blood thinner treatment but wasn't sure if it was related to wegeners or not. Thanks

[Dirty Don]

First of all, best of luck to you while in treatment. I haven't heard of any blood clotting problems yet with WG...clotting is internal in the veins, WG is external ON the exterior of the veins...hmmm...just not sure tho...will do some research on it...

[Alysia]

Hi Victor,
I am sorry for you, for being in the hospital.
I don't know if it is connected but ask the docs about RTX and blood clots.
I hope you will soon feel better :hug2:
please update us.

[pberggren1]

Yes, Wegs makes us more likely to get blood clots.

[Dirty Don]

Yes, Wegs makes us more likely to get blood clots.

How so? Just interested. Is it the disease or the drugs? Thnx Phil.

[Hal]

Hello, yes I had those when I landed in ER, along with most everything else in the book for Wegs. I assume the clots were triggered by the messed up circulation in the legs. My blood clots were circular red spots all over both legs, like a bunch of red freckles. Looking back I wish I had taken a few photos of them, but I had other things to worry about if you know what I mean. I also had it in the lungs too. When in hospital was put on blood thinners and everything slowly dissolved over time, so hopefully yours will too as you get the inflammation under control. Good luck!

[pberggren1]

It is the disease Don.

[annekat]

I remember Sangye talking a lot about blood clots in her legs, one of which became dangerous, as I remember. For the newbies, she is a long standing member who was formerly very active here and has dispensed a huge amount of good information over the years. For the oldies, I have been in touch with her on Twitter and she seems to be OK. I think she has just become very busy with some other things, hence her not posting here often any more. It would not be hard to find her posts on blood clots with a search. In fact, any of her posts are worth searching.

[mishb]

Anyone with WG will be more prone to blood clots.

For the ladies - if you are taking oral birth control pills and have WG, then the risk of blood clots is even higher. You should look at an alternative method of birth control. Please consult your doc.

[JeanMarie]

Hope you are well soon! Dr Merkel published a study on this: Brief communication: high incidence of venous... [Ann Intern Med. 2005] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/15838068)

I've had this & I'm now a warfarin lifer after a pulmonary embolism a few years ago.

[blu4runner]

Dr Merkel is actually my Dr and the provider at the hospital here has consulted with him ng the treatment for me.

[JeanMarie]

Blu--sounds like you are in good hands. :thumbsup:

[rebekah]

I'm sorry to hear you have a blood clot. I had one in March and was on Coumadin for 6 months. I attributed it to being in a hospital bed for several days and not getting up and moving often while there, but we are more prone to getting them. Here is a thread on blood clots Sangye started with some helpful information... I saved it in case I ever wanted to refer back to it. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/712-blood-clots-weggies.html

I hope you're out of the hospital and feeling better soon. :)

[blu4runner]

My Dr just came in and my INR is getting better so hopefully tomorrow or Wednesday I'll gt to go home. She is going to call Dr Merkel and give him an update.

[Pete]

The night I was admitted to OSU hospital, the night nurse came in at about 3 am and gave me a shot of heparin into my belly. When the day nurse came in after reviewing my chart, she asked how I liked the heparin shot. When I said that it wasn't much fun, she asked me to get out of bed and go into the hallway where she showed me a wallpaper border of footprints near the ceiling. She then told me that if I walked as far as the footprints went three times a day, I'd get no more heparin shots. I walked very faithfully the rest of the time I was hospitalized. ;-)

[Wheels]

My hubby got a old clot in his leg 3 months after being dx 5weeks later 2 went into his lungs. On warfarin. Every time pills change so does warfarin dose. Always getting blood checked.

[JeanMarie]

Wheels--same for me. Warfarin is a bigger pain than pred. I now do the blood test myself at home. Its more expensive but better than being stabbed 2x a month--my veins were warring out.

[blu4runner]

Got discharged from the hospital yesterday. Happy to be back at home and work. I guess I can add Coumadin to my drug list now. Hope everybody has a Happy Thanksgiving!