Re: WG webpage for Joan Tapia

[Guest guest]

Dear Joan,

My friend, Bruce, has WG. He has created a nice WG webpage that you

and other members may find useful:

www.wegenersgranulomatosis.net

Love,

> Dear Joan,

>

> Thanks for sending in your Questionnaire. I have added the information

> to our " Member Medical History " Files on the Group site and posted it

> below.

>

> You now have Full EN Group privileges.

>

> If you are receiving EN Group emails, remember that you can go to the

> EN Group site whenever you like by going to :

>

> http://health.groups.yahoo.com/group/erythema_nodosum_Group/

>

> and logging on with your Yahoo ID and secret password.

>

> You do not have to have the group emails delivered to be a member here.

>

> I don't know if any of our members have WG. I do remember reading one

> case study that linked EN to it. With most of us who have triggering

> disorders the EN resolves once the other disorder is under control. I

> sincerely hope your EN resolves soon.

>

> Love,

>

> **********

> Joan Tapia's Case History

>

> 7/15/05

>

> 1. Your name and age: Joan Tapia age 59

>

> 2. Your location Cincinnati, OH

>

> 3. Your email address: jatapia@f...

>

> 4.

> 5. Your Yahoo ID:tapia_joan

>

> 5. Describe your erythema nodosum/PG symptoms.

>

> I think it started on Memorial Day weekend,

> when I suddenly developed a temperature of

> 103.2. Since I am on chemotherapy for

> Wegener's Granulomatosis, I was hospitalized.

> They thought I had pneumonia and I was put

> on high doses of Solu-medrol and an antibiotic.

> I was in the hospital about three days.

> About a week later I developed a mysterious

> red bump below my right knee. About a week

> before I got the high temp, I had noticed

> weakness and pain in my right knee, but I

> attributed it to the WG. My knee became

> sorer and the red spot increased. My oncologist

> didn't know what it was, but thought it might

> be cellulitis, so she put me on an antibiotic.

> I also had a cytoxan treatment that day--1000 mg,

> IV. The redness began to disappear, so I thought

> the antibiotic was working. However, by the

> next week it was worse. I went to my family

> doctor, who was mystified and sent my to an

> infectious disease specialist. The ids was

> mystified and sent my to my dermatologist,

> who did some punch biopsies, but he is convinced

> I have ENS. I am very tired, my knee hurts and

> is swollen, and I feel kind of " evil. " (That's

> the malaise.) I mostly lie around and read.

>

>

> 6. List any other health conditions.

>

> I have Wegener's Granulomatosis, which

> is an autoimmune disease of the small

> blood vessels. It especially likes the

> sinuses, the lungs, and the kidneys, but

> it can go anywhere. I was exposed to dust

> from 30 year old insulation at my workplace

> and my symptoms started after that--fever,

> joint and muscle pain, fatigue, a terrible

> cough, peripheral neuropathy, and lumps

> on my legs that looked like my current ENS,

> but everyone thought was cellulitis at the time.

> The symptoms started 3-04, I saw lots of

> doctors, and was diagnosed 11-04 with WG.

> I started with 30 mg of prednisone daily,

> I am now down to 15/20 mg of prednisone,

> alternating days. I also take chemotherapy--

> cytoxin, every other week. I usually get

> about 1600 mg. My highest dose was 2100 mg.

> That was pretty brutal.

>

> I also have chronic iritis and pars planatis.

>

> 7. State what medications or treatments you take for EN, and their

> effectiveness:

>

> I am already taking prednisone and cytoxan

> for WG. For the WG, bedrest.

>

> I'm better when I rest, but I can't do much

> I've been resting since Memorial Day weekend,

> about six weeks.

>

> 8. When did you first get erythema nodosum or PG?

>

> I think Memorial Day Weekend, 2004.

>

> 9. How long have you had erythema nodosum or PG?

>

> About two weeks.

>

> 10. Do you agree to treat all EN members with respect?

>

> Yes.

>

> 11.Do you agree to post NO advertisements for any products or services?

>

> Yes, I agree.

>

> 12. How did you find this Group? (Google, Yahoo, Ask Jeeves Search,

> referral from another group or person etc.)

>

> Google