Hi There

[barbie279907]

Hi everyone I'm new and I'm learning to use this system. I feel lost and need support

[Doug]

Well, Barbie, welcome to the forum! For the most part, this is an easy site to use. I suggest you spend some time reading around. (Go to HOME, then go to each topic and see what pops up!) It'll give you a sense of what kinds of questions we will have of you, and it will help write a description of how you became aware of your WG, what kinds of doctors have been involved in your treatment, what sorts of specific questions you have about WG. The first outside source you should check (and there are many very good ones, now) is: Front Page | Vasculitis Foundation

You will come across others ones as you wander around the forum. Take some time to check them out. Different members have poosted links thgey felt explained things well, or that expanded on answers members gave other members. The main thing is, this is a place for support, its a place to rant if you have a bad day, its a place to share your experience with the forumn because, as you will see, there's an amazing difference in each of our experiences with WG!

[barbie279907]

Well my story is about my sister Norma. She had been in remission for 2 years, after having gone thru chemo and all these meds and withdrawals. She fought for her health for about 3 yrs. She had been fine and happy. That is until this spring when the flu like symptoms and nose bleeds began. Then came a skin lesion on her left inner lower leg that hurt very much to the touch. She went to her Kidney Dr.(this dr. was by her side during her WG from the beginneing to the time she went on remission), he referred her to a skin specialist. The skin Dr. gave her a biopsy on the lesion- 2 stitches. It was diagnosed to be WG again. The stitches were removed. The lesion got infected. My sister went back a couple of times and was given prednisone. Skin specialist wiped his hands and sent her to a infectious disease Dr. By this time the lesion was the size of a half dollar and infected. This Dr. put a med vac on her 3 wks ago. A home nurse goes every three days to clean her infection. Yesterday the infectious disease Dr. told Norma "Well it should of healed by now. I don't know what else to do." He referred her to a surgeon now, we are going tomorrow. The lesion is the size of a golf ball and very deep close to the bone and infected and she is on antibiotics and pain killers with lite fever. She is now depress. What started out with 2 stitches is now huge. It smells like something dead.

I have tried to educated myself but have found nothing on skin WG. I found this support group to see if any has heard of such a case and give me some some support. My sister is on a leave of absence from work and we have found no cure for her. It is very discouraging for me, to see my sister so ill and I don't know what to do.

[Sangye]

Well, you've come to the right place. I've had terrible skin ulcers on my legs due to Wegs. They're healed now, but one took about 9 mos to heal, and the other was over a year.

Flu-like symptoms + nose bleeds + skin ulcers = Active Wegs. She needs treatment for the Wegs-- without getting it under control, there's no way to make progress with the ulcer. Pred isn't enough.

One of my ulcers grew to the size of my palm. So far beyond excruciating I thought I was going to lose my mind. Are they sure hers is infected (ie, a wound culture came back positive)? Mine always looked like it was, but it wasn't. HORRIFIC smell and oozing fluid like water non-stop. My dogs wouldn't even go near it.

The med vac is exactly the worst thing for it. It's not a diabetic ulcer--those occur from insufficient blood flow, so a vacuum pulls more blood to the area and stimulates healing. Vasculitic ulcers are the opposite--too much blood flow and inflammation. A vacuum on that will break down tissue even faster.

She needs to go to a plastic surgeon and a wound care clinic. Even so, it will take a long time to get it to heal. We had a very hard time finding wound care supplies that worked for me. Either the usual ones made things worse, or I was allergic to even the hypoallergenic ones. Once we found a good combo, it healed at (I'm not kidding) 3-4 mm a month. (From the size of my palm) At times various docs wanted to surgically debride it, thinking it would speed it up. But messing with vasculitic ulcers only angers them. So as long as it was moving in the right direction, I didn't allow anyone to cut on it.

Plastic surgeons, dermatologists and wound care clinics don't see vasculitic lesions much. They're used to diabetic ulcers. So expect them to be puzzled. Don't let them treat it like a diabetic ulcer!!

Along with the wound clinic treatment, I also consulted an Ayurvedic doctor. The skin was blistering all around the ulcer, and even using natural chlorophyll ointment made it blister immediately. (That stuff will heal anything.) She said inflammation is excess Fire element, so adding oils worsens it. I'd discovered that cortisone cream was fine, but not the exact same dosage in an ointment. She said to follow a Pitta (fire) pacifying diet and it worked like magic. You can find that online, just google Ayurvedic diet. Don't use herbs or other supplements. Just change the diet and it will help the ulcer a lot.

[Jack]

I can only agree with Sangye. Wegener's skin problems are common and can often be confused with infections. It sounds as though some more agressive Wegener's treatment is required before this will be brought under control.

Bare in mind that most specialists will have no idea about treating Wegener's symptoms or even recognising them. They all just see the problem before them and assume that it is just a difficult case of something they have treated before. It is only when you start to get into real trouble that the penny drops and they start thinking that it might be something they have no experience of.

My own skin problems never advanced to the smelly stage and went away immediately when my Wegener's was treated.

[Doug]

. The skin Dr. gave her a biopsy on the lesion- 2 stitches. It was diagnosed to be WG again. The stitches were removed. The lesion got infected. My sister went back a couple of times and was given prednisone. Skin specialist wiped his hands and sent her to a infectious disease Dr. By this time the lesion was the size of a half dollar and infected. This Dr. put a med vac on her 3 wks ago. A home nurse goes every three days to clean her infection. Yesterday the infectious disease Dr. told Norma "Well it should of healed by now. I don't know what else to do." He referred her to a surgeon now, we are going tomorrow. The lesion is the size of a golf ball and very deep close to the bone and infected and she is on antibiotics and pain killers with lite fever. She is now depress. What started out with 2 stitches is now huge. It smells like something dead.

I have tried to educated myself but have found nothing on skin WG.

If it was diagnosed as WG, I wonder why she was treated with Prednisone alone. People with WG can develop dry gangrene, but usually it is in the extremities or patches on the skin. If the antibiotics haven't worked, that brings to mind how the first week I was hospitalized for what proved to be WG, they gave me massive doses o antibitotics to bring down my fever, and it didn't work (of course- it had nothing to do with an infectious agent!). I may be barking up another wrong tree here, but has a WG-experienced doctor been involved, yet in her care? I just went back to check something I'd deleted from the quotation, and see Sangye and Jack are seeing similar things in your report. I'll stop here!

[Doug]

P.S. This post brings up the single biggest reality of weggies: WG-experienced doctors may not always be involved in your care.

When I see doctors not involved in care related to WG, I make sure they know which WG doctors they should consult before determining my care. I have gone so far as to give them phone numbers and the other doctor's schedule, to the point I know it.

The WG doctors I've used in past were asked before hand if they were willing to talk with the doctors unfamiliar with WG patients, and all have been very cooperative, making themselves available, for example, at times and on days they knew (I told them) I'd be with the doctors unfamiliar with WG.

It seems a bit pushy, but it's assured WG-specific treatment of non-WG issues for me, it's created professional ties between specialists and doctors unfamiliar with WG that the latter indicated they appreciated having, and its raised my confidence in managing my WG rather than letting it control me.

Sangye isn't the only nag in this forum! There are 108 symptoms of WG listed in the attachment below. From time to time, it doesn't hurt to remind ourselves of them!

http://www.wrongdiagnosis.com/w/wege...s/symptoms.htm

[coffeelover]

P.S. This post brings up the single biggest reality of weggies: WG-experienced doctors may not always be involved in your care.

When I see doctors not involved in care related to WG, I make sure they know which WG doctors they should consult before determining my care. I have gone so far as to give them phone numbers and the other doctor's schedule, to the point I know it.

The WG doctors I've used in past were asked before hand if they were willing to talk with the doctors unfamiliar with WG patients, and all have been very cooperative, making themselves available, for example, at times and on days they knew (I told them) I'd be with the doctors unfamiliar with WG.

It seems a bit pushy, but it's assured WG-specific treatment of non-WG issues for me, it's created professional ties between specialists and doctors unfamiliar with WG that the latter indicated they appreciated having, and its raised my confidence in managing my WG rather than letting it control me.

Sangye isn't the only nag in this forum! There are 108 symptoms of WG listed in the attachment below. From time to time, it doesn't hurt to remind ourselves of them!

Symptoms of Wegener's granulomatosis - WrongDiagnosis.com

thanks Doug Good idea!

[jola57]

Barbie, what Sangye and doug said I totaly agree with, further please make sure your WG doctor knows about the care of vasculitis ulcers. Some WG docs are ok to treat the ongoing WG symproms but not necessarily the dermatological ones and dermatologist will likely treat your sister as they would a normal diabetic ulcer - wrongly so. So do make sure that all the doctors are on the same page and know 100% how to treat the vasulitis ulcer. Do the legwork for your sister who can't do it herself.

[barbie279907]

Hello Everyone,

Does anyone know any WG Drs. close to El Paso, Texas. My sisters Drs. are not doing anything for her she needs a Dr. that knows what shes got. Thank you very much for all your advise.