Hey Al, newly diagnosed in Ohio.l

[Sangye]

When I was first dx'ed and admitted with pulmonary hemorrhage, I developed huge numbers of clots on the 3rd day of 1,000 mg IV solumedrol. I knew it was clots as my calves instantly went into tetany, but the doppler ultrasound was negative. The pain continued and worsened. My docs didn't believe me and I was discharged with it and told to take magnesium and walk around as much as possible. I was extremely weak at that point, which probably saved my life. A whopping 3 weeks later, after increasing pain, weakness, shortness of breath, and an indescribable feeling of something very wrong, I headed to my pulmonologist. My lungs sounded clear and my O2 sat (at high altitude) was 100%. But I couldn't breathe. He ordered a chest CT with PE protocol and it was discovered that my lungs were packed with clots. They were still bleeding, so going on anticoagulants was dicey.

Since then, I've learned from ultrasound techs that it can take awhile for clots to "organize" enough to be visible on US. I suggest you get a repeat US as soon as possible. You should also know that Weggies are 23% more likely to develop DVT. Your docs probably don't know this. It was the result of the WeCLOT study. Any Weggie with unexplained lower extremity edema should be checked for clots. Don't let your docs tell you it can't happen if you're on high-dose pred. It happens all the time.

If it's not clots, it sounds like you just have the vasculitis rash on your feet and legs. That's very common and indicates the Wegs is generally active. (I had that also. That's actually what we biopsied to demonstrate Wegs, as it was too risky to biopsy my lungs.) Swelling of the lower extremities is very common with Wegs, even without the rash. It's one of the symptoms that we Weggies all know about, but even the Wegs specialists seem to give it very little weight. Both the rash and swelling should improve as the drugs kick in.

I don't see how support hose would help in your case, since they mobilize blood that's pooling in the veins. You run the risk of pushing fluid into the rash and causing vasculitic ulcers. That happened to me and is a nightmare you really want to avoid.

[nurse Bill]

Thanks for the info,My nephrologist put me on daily lasix and suggested support hose to help with the 3+ lower leg edema. I will be monitoring the swelling very closely and see my Rheumy in 10 days. If no improvement in 7 days I will notify both of them and ask for a venous duplex for clots. I'm still learning about wg and it's incidious symptomology.

[Sangye]

The other factor that contributes to lower extremity edema is adrenal depletion caused by pred plus the other drugs and Wegs in general. It's a major factor in my case and has gotten out of hand since I had to go back on high-dose pred to treat acute hearing loss. Even as I'm lowering the pred (down to 7mg now) the edema is still much worse than before. Pred beats up the adrenals pretty bad.

[Doug]

I don't miss having feet the size of cured hams with five plump bratwursts lined up on the end of each one. I especially thank you, Sangye, for your explanations of the effects of adrenal depletion. I was unaware of the causes of various weggie vicissitudes until you started describing them.

[elephant]

I second the thanks too!