in the hospital

**shadow** · 07-06-2011, 02:12 PM

Admitted ito hosp today. Blood clot right upper lung. Put on mega heprin not happy about. But told that if it moves could be stroke. I'm worried as I'm on cytoxan for 1 1/2 months. Io have been short of breath and was at another hospital and told it was venis deficenecy. I had to fight insurance but when I told them I have coughed up blood the last 3 days the said to go to nearest hosp.
Has anyone had this withbeing on heprin and cytoxan, with pred?
Shari

**Kathie28** · 07-06-2011, 02:56 PM

Shadow hang in there! I'm sorry to hear about the blood clot this happened to me two months ago when a clot moved from my leg to my lungs. I've never taken Cytoxin so I can't comment on that but I did take the shots while on high doses of Pred. They were not much fun but I didn't have to do them for to long. Once your blood is thin enough you will just be on a blood thinner medication. I'm still on that now. You continue it for about 6 to 9 months. At least I think that is the norm. I was in the hospital 2 nights at first then went home for a week and wound up back in the hospital for 5 days because I got worse before I got better, parts of my clot were continuing to move to my lungs. I probably got out of the hospital the first time to quickly. It took me a while to recover but I'm feeling much better now. I hope you get well really soon!

**DEE** · 07-06-2011, 03:21 PM

I was taking cxt pred and heprin last year .I had been on cxt for 10mths and had been on preds continually for two years ! I stayed in hospital for ten days and then change to tablet form Warfarin just before I went home . had regular blood checks and stayed on the medication for 9 months. I had multiple clots on my right lung. The best advice I can give is dont rush anything,rest as much as you .It takes a while to get over.but I have been ok since .

**shadow** · 07-06-2011, 03:57 PM

Thanks guys I needed to I'm on the right course.it's great to have friends and family to talk to.
Shari

**Jack** · 07-06-2011, 11:32 PM

Do not assume that blood clots are a result of medication since they are one of the high risks that go along with having Wegener's. Together with many others on here, I've had them in my legs and also my lungs so I now take Warfarin permanently. Don't treat them too lightly since they are potentially very dangerous.

**Sangye** · 07-07-2011, 02:39 AM

Shari, I'm so sorry to hear about this! I got "uncountable" numbers of blood clots in my legs and lungs while on 1,000mg solumedrol, on my 3rd day after dx. I hadn't started ctx yet.

Wegs makes you 23 times more likely to get clots. (If your docs don't know this, tell them to look up the "WeCLOT" study) The risk seems to be highest when Wegs is active, though it can happen at any time in a Weggie.

The standard treatment is to start you on coumadin/warfarin and take heparin shots until the coumadin kicks in. Most people have to remain on coumadin for at least 6 months. I was on coumadin and got more clots, so I had to do the shots for 2.5 years. Now I'm back on coumadin permanently.

You may have to stay on coumadin for life. The risk of repeat clots is higher once you've formed them, and if they've gone to your lungs the risk for future clots is even higher. It's not a big deal, though I freaked out for a LONG time about it. Now it's very routine-- the least stressful of my drugs. When you're released, make sure you consult with a hematologist. It's extremely dangerous. Follow your doctor's orders to the tee.

**Rose Cozzette** · 07-07-2011, 02:45 AM

Originally Posted by shadow

Admitted ito hosp today. Blood clot right upper lung. Put on mega heprin not happy about. But told that if it moves could be stroke. I'm worried as I'm on cytoxan for 1 1/2 months. Io have been short of breath and was at another hospital and told it was venis deficenecy. I had to fight insurance but when I told them I have coughed up blood the last 3 days the said to go to nearest hosp.
Has anyone had this withbeing on heprin and cytoxan, with pred?
Shari

I too had blood clots go to the lungs when I was first diagnosed. I have been told I will likely be on warfarin for life, take 3 mgs daily. did have clots in leg 2 mos. after dx also. sorry you are going thru this but as Jack said, seems to be WG. have hope and take care!