Re: PG and LGLL

[Guest guest]

Hi,

Here is a link about different treatments for LGLL associated with

various other conditions. Although PG isn't specifically mentioned,

Methotrexate might help:

http://rheumatology.oxfordjournals.org/cgi/content/full/43/9/1197

Love,

idio. EN '68

[Guest guest]

Hi,

I have PG, and the short answer is that most Dermotologists are,

indeed, not familiar with PG. In fact, it took me eight, yes 8,

different Derms before I found one who was even remotely adept at

what the disease is or how to deal with it.

ly, the best advice came when I finally gave up and made an

appointment at Stanford. Since I had so many conflicting courses of

treatments and opinions, Stanford finally gave me light at the end of

the tunnel, so to speak. At least they were very familiar with the

issue.

As for the course of treatment, Prednisone did help to bring the

wounds under control, but the many open wounds, which were brought on

by a surgery, became worse when I began to taper off of the

Prednisone. I was having bad side affects from the steroids, which

prompted the taper, but I had to step right back up.

We finally began a treatment plan of Enbrel and Methatrexate, which

have kicked in after about six weeks on the regimine. I am, by the

way, still tapering down from the Prednisone without any exacerbation

of the wounds (I am knocking on wood at the moment). I also use

dressings of Xeroform (used for burn victims)coated with a mix of

Polysporin and Protopix, which also seems to be helping keep the

redness down around the edges of the wounds.

On a side note, many publications, and advice from several doctors,

recomended the use of infusions of Remicade, but I opted for Enbrel,

as I wanted to avoid the Infusion Lab and make it easier to

administer an at home treatment plan. I have been off of work for

six months with this bout of PG, so I want to get back to 'normal'

without making the infusion appointments. Hopefully, the Enbrel will

keep working, and I have made the correct decision.

I wish your husband the best in his quest to nip the PG in the bud.

Just remember to get a good doctor who is familiar with this.

Granted it is rare and most have to research, but insist that they at

least are willing to garner the most information that they can and

act accordingly. I have to say, that the premier Wound Care Center

in the state even handled my wounds improperly by debriding them.

This is very must a 'no no' for PG victims. I ended up with a wound

5x5 inches four year ago because of it.

>

> Hi,

>

> A newbie here, and wondering if anyone in this group has another

rare

> condtion call LGLL. My husband has LGLL and recently developed what

we

> think is PG. We have an appt. with a Derm on Tuesday for a DX.

Are

> most Derms familiar with PG and what is the usual course of

treatment?

> thanks,

>

[Guest guest]

Pali,

Thank you much for the PG info. unfortunately, my husband did have the debridgement by a wound care doc, who later put him on the Xeroform. We should get the DX tomorrow that it is PG. I dress the wounds once a day with Xeroform. The dressings, when removed, show a dark drainage.

You are so right, I called many Derm offices before I found one that knew anything about PG. I also would prefer the home treatment, if possible.

I'll let you know how the appt. goes.

Jeanne

Re: PG and LGLL

Hi,I have PG, and the short answer is that most Dermotologists are, indeed, not familiar with PG. In fact, it took me eight, yes 8, different Derms before I found one who was even remotely adept at what the disease is or how to deal with it.ly, the best advice came when I finally gave up and made an appointment at Stanford. Since I had so many conflicting courses of treatments and opinions, Stanford finally gave me light at the end of the tunnel, so to speak. At least they were very familiar with the issue.As for the course of treatment, Prednisone did help to bring the wounds under control, but the many open wounds, which were brought on by a surgery, became worse when I began to taper off of the Prednisone. I was having bad side affects from the steroids, which prompted the taper, but I had to step right back up. We finally began a treatment plan of Enbrel and Methatrexate, which have kicked in after about six weeks on the regimine. I am, by the way, still tapering down from the Prednisone without any exacerbation of the wounds (I am knocking on wood at the moment). I also use dressings of Xeroform (used for burn victims)coated with a mix of Polysporin and Protopix, which also seems to be helping keep the redness down around the edges of the wounds.On a side note, many publications, and advice from several doctors, recomended the use of infusions of Remicade, but I opted for Enbrel, as I wanted to avoid the Infusion Lab and make it easier to administer an at home treatment plan. I have been off of work for six months with this bout of PG, so I want to get back to 'normal' without making the infusion appointments. Hopefully, the Enbrel will keep working, and I have made the correct decision.I wish your husband the best in his quest to nip the PG in the bud. Just remember to get a good doctor who is familiar with this. Granted it is rare and most have to research, but insist that they at least are willing to garner the most information that they can and act accordingly. I have to say, that the premier Wound Care Center in the state even handled my wounds improperly by debriding them. This is very must a 'no no' for PG victims. I ended up with a wound 5x5 inches four year ago because of it.>> Hi,> > A newbie here, and wondering if anyone in this group has another rare > condtion call LGLL. My husband has LGLL and recently developed what we > think is PG. We have an appt. with a Derm on Tuesday for a DX. Are > most Derms familiar with PG and what is the usual course of treatment? > thanks,>

[Guest guest]

Jeanne:

Thanks for the response. The Xeroform does help to minimize the pain

when removing the dressing. I place gauze pads on top of the

Xeroform to absorb drainage. I also make sure to use only paper tape

and wrap gauze, as any adherance to the skin/wound can make it grow.

The drainage, for me anyway, shows that the wounds are still very

active and gaining ground. Once the darkness disapates, I then know

that there is progress.

Again, good luck, and thanks for keeping me informed.

Elaine (aka Pali)

> >

> > Hi,

> >

> > A newbie here, and wondering if anyone in this group has

another

> rare

> > condtion call LGLL. My husband has LGLL and recently developed

what

> we

> > think is PG. We have an appt. with a Derm on Tuesday for a DX.

> Are

> > most Derms familiar with PG and what is the usual course of

> treatment?

> > thanks,

> >

>

[Guest guest]

Elaine,

re: Dressings Please tell me how you apply the dressings and what size of each one you find to work best. I have tried so many types and still haven't found one that works well. The problems is the location of the wound, the outer middle side of foot/ankle that bends when walking, loosens the dressing. thanks, Jeanne

Re: PG and LGLL

Jeanne:Thanks for the response. The Xeroform does help to minimize the pain when removing the dressing. I place gauze pads on top of the Xeroform to absorb drainage. I also make sure to use only paper tape and wrap gauze, as any adherance to the skin/wound can make it grow.The drainage, for me anyway, shows that the wounds are still very active and gaining ground. Once the darkness disapates, I then know that there is progress.Again, good luck, and thanks for keeping me informed.Elaine (aka Pali)> >> > Hi,> > > > A newbie here, and wondering if anyone in this group has another > rare > > condtion call LGLL. My husband has LGLL and recently developed what > we > > think is PG. We have an appt. with a Derm on Tuesday for a DX. > Are > > most Derms familiar with PG and what is the usual course of > treatment? > > thanks,> >>

[Guest guest]

> > >

> > > Hi,

> > >

> > > A newbie here, and wondering if anyone in this group has

> another

> > rare

> > > condtion call LGLL. My husband has LGLL and recently

developed

> what

> > we

> > > think is PG. We have an appt. with a Derm on Tuesday for a

DX.

> > Are

> > > most Derms familiar with PG and what is the usual course of

> > treatment?

> > > thanks,

> > >

> >

>

[Guest guest]

Yikes! Thank you so much Elaine. I printed out the procedure. We will see the Derm this morning. He is one of the best in this area, so we

were told. I will let you know his recommendation, after we get the official DX.

Jeanne

Re: PG and LGLL

> > >> > > Hi,> > > > > > A newbie here, and wondering if anyone in this group has > another > > rare > > > condtion call LGLL. My husband has LGLL and recently developed > what > > we > > > think is PG. We have an appt. with a Derm on Tuesday for a DX. > > Are > > > most Derms familiar with PG and what is the usual course of > > treatment? > > > thanks,> > >> >>

[Guest guest]

> > > >

> > > > Hi,

> > > >

> > > > A newbie here, and wondering if anyone in this group has

> > another

> > > rare

> > > > condtion call LGLL. My husband has LGLL and recently

> developed

> > what

> > > we

> > > > think is PG. We have an appt. with a Derm on Tuesday for a

> DX.

> > > Are

> > > > most Derms familiar with PG and what is the usual course of

> > > treatment?

> > > > thanks,

> > > >

> > >

> >

>

[Guest guest]

Jeanne,

I hope this is your name. I know you are looking for dressing solutions in relation to dressing your ankle but I have some tips on what works for my PG in relation to healing the lesions. I have read your e-mail and would like to offer my two cents. My dressings have been the same since diagnosis of my PG. The nurses would do the dressing changes three times a day and use saline solutions (salt water) and this works very well. The dressings would be soaked off, cleaned and dressed with saline solution, The idea behind saline solutions dressings is that saline is find in your body fluids and it doesn't hurt you it actually helps you. I believe this will help with your healing time greatly.

I would not recommend using polysporine anymore. I tried that once and from experience it made things worse and my lesion just got bigger and that was before I was diagnosed. I was self-medicating and polysporine made things worse.

I hope this helps.

Have a great day.

Nina

[erythema_nodosum_ Group] Re: PG and LGLL

Jeanne:Thanks for the response. The Xeroform does help to minimize the pain when removing the dressing. I place gauze pads on top of the Xeroform to absorb drainage. I also make sure to use only paper tape and wrap gauze, as any adherance to the skin/wound can make it grow.The drainage, for me anyway, shows that the wounds are still very active and gaining ground. Once the darkness disapates, I then know that there is progress.Again, good luck, and thanks for keeping me informed.Elaine (aka Pali)> >> > Hi,> > > > A newbie here, and wondering if anyone in this group has another > rare > > condtion call LGLL. My husband has LGLL and recently developed what > we > > think is PG. We have an appt. with a Derm on Tuesday for a DX. > Are > > most Derms familiar with PG and what is the usual course of > treatment? > > thanks,>

>>

All new Yahoo! Mail Get news delivered. Enjoy RSS feeds right on your Mail page.