New to WG

**crackers** · 07-09-2009, 02:36 AM

hi douglas.i can only comment on a couple of your questions,the ones relating to water retention and swelling.the feet swelling is actually retained fluid which travels south due to gravity(accordind to my gp).you should be on water tablets and try to keep your feet elevated when sitting.
john.

Doug · 07-09-2009, 10:15 AM

Which I am and which I do! Your GP is exactly right, John. I have a small sofa with high arms that allows me to rest, even sleep (as I often have) with my feet not only above my heart but above my head. It sounds a torture, but actually is comfortable (surprisingly!). For shorter term swelling, a comfy leather recliner works but doesn't get my feet up sufficiently high to exceed the elevation of my head.

I'm on Furosimide, the generic version of Lasik (spelling?). I take one 40mg tablet a day of that.

If I am on my feet for a long time, they do swell, no matter what I'm on, but the swelling hasn't been anything one day's pampering wouldn't take care of. At one time, I took only 20mg of Furosimide a day, but the amount of damage done to my kidneys in the initial assualt by WG was sufficient to warrant returning to the higher dose: I had fairly frequent swelling in the time I was on 20mg, but virtually none, except under the circumstamnces noted above, while I stay on the 40mg!

Elevating my feet feels great anyway, so that's a happy way to take care of a persistent problem. Now that I'm retired, it's easier to make the time to get my feet up, too.

**Sangye** · 07-14-2009, 01:50 AM

Hi Doug M,
Welcome to the group! You've had a difficult time, that's for sure. I wonder how being in a coma affects how quickly you accommodate to the reality of having Wegs. I can't imagine.

I have ongoing problems with swollen calves/ankles/feet. It can be two different causes for me. It's always been a sign that my Wegs is active. I don't know why that is, but I've heard it from other Weggies as well. In fact, they started to swell a lot more in Feb/Mar and I believed my Wegs was stirring up. My Wegs doc felt it was due to drug side-effects and the need for PT. But it's only gotten worse, and now we know for sure the Wegs is active. Not his fault--there were no other signs of active Wegs-- but now we know it's a reliable indicator for me, and precedes blood work changes by months. The clue is that no matter how much I put them up all day, they still swell.

Even when my Wegs was better controlled, swelling was an ongoing issue for me because I had a ton of leg and lung blood clots. That messes up your circulation. Putting them up during the day helps with this cause of swelling, as long as the Wegs is behaving itself.

I'm hopeful that getting the Wegs more under control right now will drain these soggy feet. Diuretics don't do it at all. It keeps me from standing or walking more than 5 min. at a time.

**Douglas Mayville** · 07-15-2009, 02:40 AM

Hello Sangye:
If your wondering how to cope with the reality of Wegs after being in a coma. When in it you just don't know. When you come out you wonder why I am a third of the person I used to be. Physical disabilities take a toll.

My indicator for active Wegs is a rash accompanied with small blood blisters. I knowd it and so do the docs. ANCA keeps coming back negative as far as active disease.

Swelling of hands and feet are a side effect of lyrica that I am taking for neuropathy in feet and hands. Also wearing AFO's for drop foot. People wonder how I complain of pain when I have paralysis in the area that I'm complaining about. I just do. I do have some clots in the legs and use coumadin to keep INR in range. Lasik works as well as putting feet up for the evening. I have a long way to go and I will get there.

**crackers** · 07-15-2009, 03:35 AM

douglas you're not alone.everyone on here is right behind you.
john

**Jack** · 07-15-2009, 05:07 AM

I'm sure you'll come through this OK Douglas. It is one of the joys of Wegener's that it keeps throwing new stuff at you, but it usually has to get rid of some of the old stuff first.

Although I must say, I'm getting quite a collection at the moment.

**Sangye** · 07-15-2009, 06:58 AM

Hi Douglas, I hope no neurologists are puzzled at how you can have paralysis and pain in the same area--sensation and pain are carried by different types of nerve endings.

Like John said, everyone is right behind you. Knowing the characters in this group, that thought might be enough to keep one up at night, though.