Re: Spray On Skin

[Guest guest]

Hi Luke,

Glad to hear from you! Hope you are feeling better now. That article was

interesting--and shows how new and better things are always just on the horizon

if we can hold out.

I had an EN flare up after a 4 yr remission but I'm nearly over it now.

We have not heard much from our other PG members, so I hope everyone is doing

well, and that " no news is good news " .

Love,

>

> Doea anyone know anything about a new 'Spray on Skin' treatment for ulcers?

> There is an article here http://www.bbc.co.uk/news/health-19093302

> It would seem that as a solution to cover PG ulcers or EN breakouts, even if

it just acts as a barrier to bacteria whilst the skin under it is given a chance

to heal, it may be possible to use this skin.

> I have mentioned it to one dermatologist who hadnt heard of it and couldnt

find much information about it.

> Is it available on the NHS? Is it suitable for use with PG ulcers?

> I've been having a few PG issues recently and have been in so much pain, I

couldnt really do much for myself. My yahoo ID seems to have been disconnected

but luckily a friend has let me use his account.

> Ive recently ( last 2 weeks ) gone back to Cyclosporin and my doctor is

looking into Thalidomide as a therapy, but it seems that its difficult to

obtain. Id be interested in knpwing if anyone else has tried Thalidomide as a PG

treatment and any side effectsor benefits they got from it.

>

> Glad to be back.

> Luke

>

[Guest guest]

hi rebecca and luke,

ya, my bad. thought i would peek in. sorry to hear of the flair up rebecca.

it had been so long. how is the hand? heal ok? that was the last time we

communicated, your hand was in a cast.

i finally got a job. started last week. its temp to perm after 90 days. not

teaching special ed though. quality engineer at johnson controls. local

plastics plant, only 7 miles to work. my health has been good. so sorry luke,

that you continue to suffer with pg. when i lost my student health insurance a

year ago i had to go off remicade. had been on that for 10 years. i've been on

humira now for a year and no cd or pg issues. humira is expensive but i get it

free through patient assistance. otherwise its about $1,000 a month. i don't

remember luke, but have you tried a biological treatment (remicade, humira,

etc.)? i did cyclo for awhile. went to tacrolimus which is in the same drug

family. i have heard of Thalidomide. can't say how well it works on pg. what

class or family is it in? it's amazing but knowing the drug classes can be a

great help. 2 drugs in the same class (having some of the same basic

ingredients) will work completely different with different people. its worth

investigating. another area to look into, if you haven't yet, is drugs that

have " off-label " uses. these are hard to find. if you have a really good doc

they will know off-label uses pretty well. another one worth investigating

because such as i have said all along, you have to have a doc that is extremely

well versed in pg.

ok, i have rambled enough. i'll try to do better at watching the posts.

love to you guys,

jeff,

cd,

pg

> >

> > Doea anyone know anything about a new 'Spray on Skin' treatment for ulcers?

> > There is an article here http://www.bbc.co.uk/news/health-19093302

> > It would seem that as a solution to cover PG ulcers or EN breakouts, even if

it just acts as a barrier to bacteria whilst the skin under it is given a chance

to heal, it may be possible to use this skin.

> > I have mentioned it to one dermatologist who hadnt heard of it and couldnt

find much information about it.

> > Is it available on the NHS? Is it suitable for use with PG ulcers?

> > I've been having a few PG issues recently and have been in so much pain, I

couldnt really do much for myself. My yahoo ID seems to have been disconnected

but luckily a friend has let me use his account.

> > Ive recently ( last 2 weeks ) gone back to Cyclosporin and my doctor is

looking into Thalidomide as a therapy, but it seems that its difficult to

obtain. Id be interested in knpwing if anyone else has tried Thalidomide as a PG

treatment and any side effectsor benefits they got from it.

> >

> > Glad to be back.

> > Luke

> >

>

[Guest guest]

luke,

i would say the pic in that link sure looks like a pg ulcer. they also describe

it pretty well without saying its pg. it makes sense because it sounds similar

to artificial skin, but in this case it is real human skin cells. i would think

your doc can do some medical research to find out more. it would be safe to say

it may not be approved yet either. try following some links from where the news

source is that reported it. do you have a medical school nearby? they could

also help ya with the research.

jeff,

cd,

pg

>

> Doea anyone know anything about a new 'Spray on Skin' treatment for ulcers?

> There is an article here http://www.bbc.co.uk/news/health-19093302

> It would seem that as a solution to cover PG ulcers or EN breakouts, even if

it just acts as a barrier to bacteria whilst the skin under it is given a chance

to heal, it may be possible to use this skin.

> I have mentioned it to one dermatologist who hadnt heard of it and couldnt

find much information about it.

> Is it available on the NHS? Is it suitable for use with PG ulcers?

> I've been having a few PG issues recently and have been in so much pain, I

couldnt really do much for myself. My yahoo ID seems to have been disconnected

but luckily a friend has let me use his account.

> Ive recently ( last 2 weeks ) gone back to Cyclosporin and my doctor is

looking into Thalidomide as a therapy, but it seems that its difficult to

obtain. Id be interested in knpwing if anyone else has tried Thalidomide as a PG

treatment and any side effectsor benefits they got from it.

>

> Glad to be back.

> Luke

>

[Guest guest]

I don't know about spray on skin, but it cross my mind. I am just healing from

PG. I used minocycline along with tacrolimus ointment the first month, now I

just use the ointment. It is working well for me. The pain was gone after the

first week.

> >

> > Doea anyone know anything about a new 'Spray on Skin' treatment for ulcers?

> > There is an article here http://www.bbc.co.uk/news/health-19093302

> > It would seem that as a solution to cover PG ulcers or EN breakouts, even if

it just acts as a barrier to bacteria whilst the skin under it is given a chance

to heal, it may be possible to use this skin.

> > I have mentioned it to one dermatologist who hadnt heard of it and couldnt

find much information about it.

> > Is it available on the NHS? Is it suitable for use with PG ulcers?

> > I've been having a few PG issues recently and have been in so much pain, I

couldnt really do much for myself. My yahoo ID seems to have been disconnected

but luckily a friend has let me use his account.

> > Ive recently ( last 2 weeks ) gone back to Cyclosporin and my doctor is

looking into Thalidomide as a therapy, but it seems that its difficult to

obtain. Id be interested in knpwing if anyone else has tried Thalidomide as a PG

treatment and any side effectsor benefits they got from it.

> >

> > Glad to be back.

> > Luke

> >

>

[Guest guest]

Hi Jeff,

That is wonderful news about both the job and the PG remission with the help of

Humira!!!

Forgot to even mention the hand as it is basically a non issue now. The cast has

been off for a while and except for some finger arthritis the hand is pretty

functional but not as " pretty " with it's knobby joints.

I'm selling used pet carriers, crates and kennels and other pet supplies on

craigslist. I find them at yard sales and resell them after cleaning them and

repairing them as needed. It appeals to people who want to save money and

recycle and everyone comes out ahead including me ;-) It is not a big business

but it does bring in extra income.

On Sept 1st I am officially on Medicare--a huge savings on health ins.

Still looking for the perfect cartoonist/illustrator for my cat adventure

stories. I had a couple more people want to work with me, but unfortunately the

talent just wasn't there. I've got over 20 stores written [all in rhyme], so the

hard work has been done except for the artwork.

It's been HOT in Southern Ca...though not as bad as other parts of the country.

Keep cool!

Take care, Jeff, and keep in touch!

Love,

> > >

> > > Doea anyone know anything about a new 'Spray on Skin' treatment for

ulcers?

> > > There is an article here http://www.bbc.co.uk/news/health-19093302

> > > It would seem that as a solution to cover PG ulcers or EN breakouts, even

if it just acts as a barrier to bacteria whilst the skin under it is given a

chance to heal, it may be possible to use this skin.

> > > I have mentioned it to one dermatologist who hadnt heard of it and couldnt

find much information about it.

> > > Is it available on the NHS? Is it suitable for use with PG ulcers?

> > > I've been having a few PG issues recently and have been in so much pain, I

couldnt really do much for myself. My yahoo ID seems to have been disconnected

but luckily a friend has let me use his account.

> > > Ive recently ( last 2 weeks ) gone back to Cyclosporin and my doctor is

looking into Thalidomide as a therapy, but it seems that its difficult to

obtain. Id be interested in knpwing if anyone else has tried Thalidomide as a PG

treatment and any side effectsor benefits they got from it.

> > >

> > > Glad to be back.

> > > Luke

> > >

> >

>