Re: Hydrofera Blue-For PG patients

[Guest guest]

Hi ,

I am glad to know Hydrofera Blue is still available. A while ago their

website stopped working and I thought they were out of business. The

case histories are incredible. Good Luck!

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

Good luck!

Love,

idiopathic EN since 1968

[Guest guest]

Please let me know if this product is of any assistance. I am still

battling with this terrible bout of PG. The wounds on my calf and

ankle continue to grow, and I cannot get into the Mayo Clinic until

November. The pain has been terrible, and we just cannot get this now

ten-month nightmare under control.

I am now on increased dosages of Prednisone, which I just simply hate,

and we have moved back to Enbrel from Remicade. The reason for the

shift is that the wounds got worse, so we are trying to change it all

up again. My doctor is also considering using Dapsone, which I learned

about on this site, so we shall see if that has any positive affects.

I do have to have a blood test, though, to see if I have an enzyme that

is required for Dapsone to work.

I am going to Stanford this coming Tuesday, so I am hoping that they

will have some answers to this. I am just losing faith as each day

goes on. Since I lost half of my finger to this, I am now starting to

be very afraid of my leg. Well, it is even difficult to write more

about that, so I shall stop here.

Thanks to you all for your continued support and well-wishes. I keep

hoping to report more positive news, but it just seems as if I take

many steps back with every one that goes forward. Again, please let me

know if this product brings some relief to you. I am bleeding through

many layers of bandages again, and the smell is terrible, so I am

hoping that the claims of success on the web-site are valid ones.

Best wishes to all,

Elaine

>

> has anyone tried this? it helps heal your PG wounds... or most

serious

> open wounds for that matter. i have read and heard good things. I am

> going to pick some up today. I will let you know my results but I am

> curious if anyone has had any success with this.

>

> Please discuss if possible

>

[Guest guest]

Wow, im really sorry that you are in so much pain. My heart really

goes out to you.

I understand how hopeful you might be for this product, trust me i

am right there with you. i just started it so once I have some

conclusion and results (keep your fingers crossed) I promise I will

get back to you right away.

I hope you find comfort today.

sending you a hug.

> >

> > has anyone tried this? it helps heal your PG wounds... or most

> serious

> > open wounds for that matter. i have read and heard good things.

I am

> > going to pick some up today. I will let you know my results but

I am

> > curious if anyone has had any success with this.

> >

> > Please discuss if possible

> >

>

[Guest guest]

Elaine,

I am so sorry to hear how your PG has gone for you. I am hoping that something, somewhere will help you. I think the doing less will help. I learned my lesson after going bowling that one night. I went to visit my sister, and rested almost the whole time. We did go walking around the levy for 2 days, and after wards came back and rested, maybe too much if that is possible.

I had no real worries there, or work to do. Just laying around laughing and remembering the 'good ol' days' when we were teenagers.

Please find the time to rest yourself.

Debbie en 5-7Get a sneak peek of the all-new AOL.com.

[Guest guest]

Thanks to you all for the responses and well-wishes. I am sitting

here in tears, but they are of happiness to know that you all both

understand and support me.

Today has been a particularly tough day. My doctors have all but

given up, and the pain is getting more unbearable as the days go on.

I keep thinking of what I could have ever done to deserve this, but I

have to constantly change that mindset and get back into a positive

mode.

I appreciate the information on the Hydrodfera. I will welcome any

feedback with regard to how it is doing for you. Hopefully, it will

work as well and quickly as the product information promises. Heck,

at this point I am willing to try anything, as I am certain that you

are. Thanks, again, for your willingness to share.

As for pain medication, I have been prescribed Tylenol with Codine

and am now taking Vicodin. I really don't like taking any of that,

especially since I am on so much medication already, but I have had

to let that all go and try to manage the pain as well as possible. I

was also taking Tylenol PM to ensure a good night's sleep, but I am

now taking Ambien CR, which is working wonders for me.

I do have a funny story: I took two Vicodin last evening and then an

Ambien CR near bed time. Well, last night was also my Enbrel night

(self injection for RA). My friend agreed to give me the shot, but I

feel asleep on the couch before she could do so. When I woke up this

morning, I was concerned because I did not take my shot. She laughed

and explained that she gave it to me last night. I asked if I was

awake, and she said that she thought so. She said that I sat up and

even was asking another friend who stopped by how her day was. She

did say that I did not complain about the shot, so she suspected that

I was at least half asleep.

I do not remember a thing, but when I touched my arm, I felt the

familiar ache of the remnants of the shot. That was proof, but how

weird is it that I could not remember a thing? That is how potent

the drugs are, but they did get me through the night. , I

think that you are right on about putting the body to sleep. I feel

better once I have rested, even though the wounds continue to get

bigger and bigger. The pain is just so unbearable. Also, I probably

am doing too much, like traveling a bit, but I guess that I am just

trying to be as normal as I can. I probably am hurting myself,

though, so I am going to have to re-think it all. Going back to work

was probably not the smartest thing, either, but it is only for 4

hours a day, and it is great to have a regular paycheck again.

Disabillity was killing me!

As for how I work through the pain, I just try to find anything to

get my mind off the it. Unfortunately, it is oftentimes eating that

does it; hence, the 20 extra pounds. Like , I also try to

watch funny things on TV, like Seinfeld or Scrubs. I also 'walk it

off.' With that, I find that I have to sort of stretch my leg out.

The process is killer, but it seems to work. It hurts when I have my

leg in one position too long, which is why it really hurts when I

wake up in the morning or have to make a pit stop in the middle of

the night.

, thanks for all that you do to research this disease and to

find funding to cure EN. I know that your efforts, and those of

others on this board, will result in research for EN and PG. I find

such comfort in knowing that you and the group are there with prayers

(yes, I do that a lot), support, empathy, and simply just being

there, albeit in a virtual sense. Thanks for it all!!!

Love,

Elaine

> > >

> > > has anyone tried this? it helps heal your PG wounds... or most

> > serious

> > > open wounds for that matter. i have read and heard good things.

> I am

> > > going to pick some up today. I will let you know my results

but

> I am

> > > curious if anyone has had any success with this.

> > >

> > > Please discuss if possible

> > >

> >

>

[Guest guest]

i say go for it. i don't see anything that would harm. there is some

excellent wound care dressings out there....think i was put on them all

at one point. i was on one very similar to this, but i think it's

composite was different. it was blue and you trimmed it to the wound

bed but i remember it being rather " elastic " and had a gell on the

wound touch side. therapist in patient was using this. didn't soak it

in saline either.

while on this subject, let me share 2 other one's wound care had me use

(since i don't know the name of the other one). brb..........

had to go pull them out of my bag of tricks...lol.

Curity Wet Dressing (saline) by Kendall. pretty basic wet to dry.

nothing really special. but evaporation helps with the cooling effect.

Fibracol* Plus. Collagen Wound Dressing with Alginate made by

& . now this one was terrific. had a wound care clinic out

patient where the therapist was really into research (must know

rebecca...lol). this is white and is trimmed to the wound bed. it

actually disolves into the wound. very open fiber and light weight.

this stuff was fantastic. worth a try imho.

good luck,

jeff

crohns, pg, episcleritis, hearing loss/tinnitus and anything else you

can think of.

>

> has anyone tried this? it helps heal your PG wounds... or most

serious

> open wounds for that matter. i have read and heard good things. I am

> going to pick some up today. I will let you know my results but I am

> curious if anyone has had any success with this.

>

> Please discuss if possible

>

[Guest guest]

Hi Jeff,I may be the "researcher" but you have the experience, and that counts for a whole lot more ;-)Love,idio. EN '68 You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

[Guest guest]

I am sooo sorry to read that several of us with PG are experiencing

terrible pain with the ulcerations... I found that elevation of my

legs to minimize swelling greatly helped the pain - and wearing

compression stockings helped also. At times, I needed my husband to

get the stockings on as it was hard to manage the stocking over

bandages - but it can be done. Reducing swelling helps both the pain

and the PG. And you need your legs much higher than your heart - not

just on a foot stool...

And I am an example of a someone who has recovered from open PG

ulcers... and must remain vigilent with any new small signs of PG...

but it is possible to get this under control - if not cured.

Positive thoughts to all..

Kathy

> >

> > has anyone tried this? it helps heal your PG wounds... or most

> serious

> > open wounds for that matter. i have read and heard good things. I

am

> > going to pick some up today. I will let you know my results but

I am

> > curious if anyone has had any success with this.

> >

> > Please discuss if possible

> >

>

[Guest guest]

I am sooo sorry to read that several of us with PG are experiencing

terrible pain with the ulcerations... I found that elevation of my

legs to minimize swelling greatly helped the pain - and wearing

compression stockings helped also. At times, I needed my husband to

get the stockings on as it was hard to manage the stocking over

bandages - but it can be done. Reducing swelling helps both the pain

and the PG. And you need your legs much higher than your heart - not

just on a foot stool...

And I am an example of a someone who has recovered from open PG

ulcers... and must remain vigilent with any new small signs of PG...

but it is possible to get this under control - if not cured.

Positive thoughts to all..

Kathy

> >

> > has anyone tried this? it helps heal your PG wounds... or most

> serious

> > open wounds for that matter. i have read and heard good things. I

am

> > going to pick some up today. I will let you know my results but

I am

> > curious if anyone has had any success with this.

> >

> > Please discuss if possible

> >

>