Re: Pictures of My Pyoderma Gangrenosum

[Guest guest]

Dear Darlene,

When I click on the photos URL I get the message: " Sorry, kayw.rm. has

not enabled any public albums in their account. "

Please send me the photos as an attachment to:

rebeccastrecker@...

and I'll post them to the Group site. The photos have to be JPG or gif

files to be posted on Yahoo Groups.

Although I do not have PG, I have read a lot about it, and our members

especially Jeff have helped to educate me. Your case does indeed

sound very different from what I am familiar with.

I am posting your " Case History " under our Member Medical fiels, and

you now have Full EN Group Privileges.

I developed two small bumps last night in the usual left leg. I do

feel my own EN may be due to a delayed allergic reaction. I had the

carpet cleaned yesterday and all those chemicals may have triggered

it. I just mention this in passing as my own EN is so mild especially

compared to PG. I'm glad you brought up the topic of PG, Darlene, as

we need to discuss and learn more about this mysterious malady.

I hope the weekend finds you feeling better!

Love,

[Guest guest]

Sorry about that. I thought I had enabled sharing. Anyway, I just

went ahead and created a folder in the groups photo section. I have

Labeled it Darlene Willis (Photos of my PG) .

Just let me know if for some reason they did not carry over in the

right format. I will resend them to you if so. They should be alright

now though.

Thanks,

Darlene

>

> Dear Darlene,

>

> When I click on the photos URL I get the message: " Sorry, kayw.rm.

has

> not enabled any public albums in their account. "

>

> Please send me the photos as an attachment to:

>

> rebeccastrecker@y...

>

> and I'll post them to the Group site. The photos have to be JPG or

gif

> files to be posted on Yahoo Groups.

>

> Although I do not have PG, I have read a lot about it, and our

members

> especially Jeff have helped to educate me. Your case does indeed

> sound very different from what I am familiar with.

>

> I am posting your " Case History " under our Member Medical fiels, and

> you now have Full EN Group Privileges.

>

> I developed two small bumps last night in the usual left leg. I do

> feel my own EN may be due to a delayed allergic reaction. I had the

> carpet cleaned yesterday and all those chemicals may have triggered

> it. I just mention this in passing as my own EN is so mild

especially

> compared to PG. I'm glad you brought up the topic of PG, Darlene, as

> we need to discuss and learn more about this mysterious malady.

>

> I hope the weekend finds you feeling better!

> Love,

>

[Guest guest]

Dear Darlene,

The new Folder with photos came out fine.

Those ulcers look so painful. Do you use a wound bandage or does it

work better to expose them to the air?

We have a Link on Hydrofera on the group site:

http://www.hydrofera.com/woundcare.html

It is relatively new and supposed to be an excellent product.

Love,

[Guest guest]

darlene,

i feel very sorry for you when i look at those pictures. i know the

pain level that this thing gives. it compares to none other. i have

heard of this in the mouth, even on the gums, but never in the sinus

cavity. that has got to be the worst of all of the worst situations

to deal with. and to make things worse, as you mentioned, due to

pathergy, they can't do anything surgical! just to let you know, my

underlying cause is crohns and my pg hits me on the lower legs. been

in remission for about 2 years now. also, i am on remicade and also

mtx. i take the mtx subcutaniously (weekly injections), so as to

provide for slow release. i am down to 10mg (.4cc). i get remicade

every 12 weeks. the cd is mostly quite also. i take about 6 other

meds to control the side effects of these and other meds.....as you

mentioned. certain herbs, i guess you might call them, are good for

those on mtx also, in case you don't know. since mtx is hard on the

liver, milk thistle and also beet extract help the lever functions.

my liver functions have actually improved since taking these.

i am curious, i take it that the mtx won't work alone? you need to

be on the dapsone and the prednesone also? with your ra, what about

remicade? just curious if you have considered that. what do you

take for the ra pain?

my heart goes out to you darlene. if there is ever anything i could

do, let me know.

jeff

>

>

> I don't mind sharing the pictures of my lastest flare up of

> Pyoderma Gangrenosum. My underlying disease is Rheumatoid Arthritis

> which is beng treated with methotrexate intravenously by me

weekly.

> I'm going on 4 months into this flare up so far.

> My case is even more unusal the normal unusal ( that make sense?)

> (So I'm told) due to the fact the the Pyoderma

> Gangrenosum is not only effecting my external body

> (Elbows,foot,hands,and knees.) but is presently active on spreading

> through out my Nasal Cavity,Mouth and Throat. So far it has

> completely destroyed my Nasal Septum ( Destroyed the cartilage that

> separates the left and right nostril.Causing the bridge of my nose

to

> collapse leaving me with the " Saddle Nose " effect. Of course they

can

> not operate due to the surgery causing additional trauma to the

> already existing ulcers..Which would cause new outbreaks.

> I was hospitalized in Oct for 6 days to receive high dosage pulse

> intravenous cyclophosphamide Corticosteroids.Then was discharged

with

> the following treatment.

> Taking 75 MGS of Dapsone,40 MGS of Prednisone, (Plus Numerous other

> medications to control the complications that has arisen due to the

> Prednisone such as High Blood Pressure,Diabetes,Gastric Ulcer,Bone

> Weakness. Feel Free to either post my link to the pictures or

> download them the the message board files.

>

> http://photos.yahoo.com/kayw.rm.

>

> Thank You,

> Darlene Willis

>

> http://profiles.yahoo.com/kayw.rm

[Guest guest]

Everyone,

Thank You for understanding. It is so comforting to know that there

are people out there that really can say " I know how you feel " and

actually really mean it. This disease ( as with any ) can turn your

whole world upside down. , causing drastic transitions. Just with in

the last year I have went from being a successful 40 year old

accountant living in Colorado to now being a divorced mother (a 8

year old son) who had to resign and move back to Ohio and stay with

my parents ,( now I'm on social security disability, which was

approved in less then two monthsI had heard that it ususaly will be

denied and drag out for a year or two. But their doctor took one

look at me and then within a week after seeing him they called and

said it was approved. )But I did not want to admit defeat and I

wanted to keep on working and be a productive member of society. That

step has really set me back mentally.

.. Thank God I am so fortunate to have a loving and caring family.

They are able to help me take care of my son . I think the hardest

part is the fact that I can not do much with ( like the every

day normal typical stuff like taking a long walk). So the PG has

not only effected my life and life style but has now effected the

ones around me too.

Thanks for the tip on the herbs. I will for sure check in to them.

On the 22 I go back to the Doctors (all 12) to discuss further

possibilities on new treatments ( maybe remicade will be brought

up) . So far I'm taking 29 pills a day. As well as taking .9 CC of MTX

(weekly). Which controls my RA. As far as pain meds, I try not to

take anything . I have in the past , but after a while they don't

work . Plus it adds another pill to my arsenal. But when I do it is

Endocet. Which is not strong enough anyway.

Too bad we all can't become immune to pain, huh? I would just like to

be able to wear a shoe

Thanks for letting me vent. I do not want to come across as

complaining because I'm not. Just venting. I'm probably one of the

lucky ones. I know I'm alot better off then some and I do count my

blessings.

God must have alot of faith in me because you know the saying " God

only puts on your shoulders what he knows you are capable of

carrying " ). Just seems like on some days lately, my knees buckle a

little.

Thanks for listening everyone,

Darlene

Fear is the absence of Faith.

> >

> >

> > I don't mind sharing the pictures of my lastest flare up of

> > Pyoderma Gangrenosum. My underlying disease is Rheumatoid

Arthritis

> > which is beng treated with methotrexate intravenously by me

> weekly.

> > I'm going on 4 months into this flare up so far.

> > My case is even more unusal the normal unusal ( that make sense?)

> > (So I'm told) due to the fact the the Pyoderma

> > Gangrenosum is not only effecting my external body

> > (Elbows,foot,hands,and knees.) but is presently active on

spreading

> > through out my Nasal Cavity,Mouth and Throat. So far it has

> > completely destroyed my Nasal Septum ( Destroyed the cartilage

that

> > separates the left and right nostril.Causing the bridge of my

nose

> to

> > collapse leaving me with the " Saddle Nose " effect. Of course they

> can

> > not operate due to the surgery causing additional trauma to the

> > already existing ulcers..Which would cause new outbreaks.

> > I was hospitalized in Oct for 6 days to receive high dosage pulse

> > intravenous cyclophosphamide Corticosteroids.Then was discharged

> with

> > the following treatment.

> > Taking 75 MGS of Dapsone,40 MGS of Prednisone, (Plus Numerous

other

> > medications to control the complications that has arisen due to

the

> > Prednisone such as High Blood Pressure,Diabetes,Gastric

Ulcer,Bone

> > Weakness. Feel Free to either post my link to the pictures or

> > download them the the message board files.

> >

> > http://photos.yahoo.com/kayw.rm.

> >

> > Thank You,

> > Darlene Willis

> >

> > http://profiles.yahoo.com/kayw.rm