Re: New to group - Aytipical PG

[Guest guest]

hi shanan,

see my questions and comments within your post below ***:

> Hi

>

> I was just diagnosed with Atypical PG, after surgery, it had taken

> over a year and several surgeries for the diagnosis. I was so

happy

> to find this group, thanks for letting me join, reading the posts

> and comments has already helped so much.

***the dx is after surgery. can i ask what the surgery was for? pg

has a characteristic known as " pathergy " . surgery or heavy

debridement on pg will cause it to spread rapidly. i can discuss

this more but for now, do not allow anything except mild debridement

and only at a latter stage when it is healing (wound bed shows

granulation). to see what i mean by that, see my pics in the photos

in my latter stages.

>

> I had a few questions to ask as there are a lot of people who have

> experience with PG here.

>

> I just started treatment 3 weeks ago with 20mg of Prednisone (hate

> the prednisone already), 75mg dapsone and .1 protopic.

***hopefully, this will be comforting to you. this is good first

line treatment and pretty typical. as long as you are not on

prednisone on a long term basis, i don't see any harm in this as

initial treatment plan, especially if your pg is mild. i like the

multi-rx approach. sounds like your derm is starting out pretty

knowledgeable.

>

> Has anyone else had any luck with the above doses?

***i have not. at one point i was on 120mg prednisone...still didn't

help. don't let ANY doc up that pred to that level or anything

close. if pred does not work at the lower levels, such as you are

on, then this line of defense should be abandoned!!!

It appears the

> ulcer beds are not as deep, and there is some granulation, but I

> still have the purple raised borders that seem to be expanding with

> dark spots. I see my Derm at the Mayo Clinic in Rochester on

Monday

> and I want to make sure I am asking the right questions too.

***okay, granulation is GOOD! raised purple boarders and dark spots

expanding are not good. HOWEVER, during the course of moving from

ulceration to healing it may be in that transition. not sure. i

would not be " too " alarmed because the granulation is present. if

that is showing more each day, i would sit tight. the granulation

does work from inside out so that is why i say that. is it bleeding

at all? how hurty is it? the more ulceration, the more hurty.

there are a couple of indicators that will indicate whether or not

the ulceration has stopped. this is the first goal, to stop the

ulceration.

>

> Also, dressing dilemmas, I was using Tegaderm, but because of the

> size I now need something a bit more absorbent and covering, any

> suggestions would be greatly appreciated.

***first suggestion here is to visit a wound care clinic, especially

if the derm doc or his rn is not providing that service or help.

this is an important part of the healing process. i don't care how

small the pg is or how many there are or where they are, wound care

is a top priority with this. bug you derm doc...call his office, get

an rx for wound care...typically done at your local hospital,

depending on where you live. there are some really great wound care

treatments, dressings and special care that they can provide. they

should be familar with pg. ask them, be sure they are. if they are

not, request your derm doc to send you some place where they ARE

familar with pg. this is important because with all good intentions,

an unknowledgeable pt can do more harm than good. if there is ANY

question on what your pt might want to try or do with your wound,

please, PLEASE e-mail me or post here and ask. by all means, if they

are doing something too aggressive, it will hurt like hell and that

means they are doing something wrong. for instance, my typical wound

care involved:

lavage (special machine that shoots saline water on the wound and

vacuums it at the same time. this is ideal. this sounds aggresive,

but the pt can adjust it and be gentle with it).

whirlpool

appropriate dressings there are some good one's out there.

i hope this helps! please let me know!

jeff,

cd,

pg

>

> Thanks

> Shanan_l

>

[Guest guest]

Jeff,

Thanks for the reply, the information is very helpful, I will

definitely ask about wound care on Monday. Here is the info below,

sorry it's so long, I get typing and just keep going....

I acquired this condition after a breast reduction in November of

2006. I had two additional surgeries from the first plastic surgeon

to attempt to close the wounds, and then was referred to the Mayo

Clinic after the third occurrence. Oddly enough, the plastic surgery

dept at the Mayo did another two surgeries, before referring me to an

IM and Women's Health Center. You are right about the pathergy, it

got worse, with more sites after each surgery. I was scheduled for a

third surgery at the Mayo Clinic when I found the PG information on

the Internet. My IM referred to me Dermatology as a precaution, (I

would have asked for one regardless). The Dr took one look and went

to get his supervisor, (which thankfully was Dr Gibson who has

written papers on the subject). They advised that surgery would be

the absolute worse thing, so that one was canceled. I didn't get my

medication regimen until I returned home as they had to await the

path report on biopsy, ( I live 6 hours north of Rochester in

northern MN). So I haven't had a chance to ask about a lot of

questions I have, and being we are pretty small and isolated up here,

my regular Dr hadn't really heard of it before.

About the granulation, I have the atypical granulomatous pyoderma

gangrenosum, so it isn't as aggressive as regular, there always

seemed to be small granulation. With the medication is has formed a

lot faster, with more coverage of the wound. But it doesn't to be

viable in some of the areas, (it appears to be healing nicely, and

them the purple spots will start, it will bleed from under the newly

formed areas and then turn gray and slough off or the new tissue will

collapse and the bed widens). This is the one the one thing that has

been consistent with the wounds each time. I looked at your

pictures, mine is much smaller and not as deep (about 6 cm area, a

couple of mm depth with one deep tunneling wound) but I can see the

similarities in the tissue. I could not imagine the pain you must

have went through with a wound of that size. Given the sensitive

area mine occurred on, it's fairly painful for me, but looking at the

pictures of others, it's probably pretty minor in comparison . It

does bleed. Pretty much washed up my Curling season too

It relives me to hear it's pretty standard to start out on that

medication. Maybe I will be lucky and they will lower the prednisone

on Monday,(I can wish anyway) Thanks again for your very helpful

post, I will let you know what they advise on the wound care to make

sure it's not something that is going to make it worse.

Shanan_l