Re: PG and drains/ needle biopses, and PG vs. EN

[Guest guest]

Hi Hattie,

Although I will leave most of your questions to Jeff " our PG expert " ,

I can tell you that EN can sometimes turn into PG. This isn't very

typical, but probably moreso with UC and Crohn's. Sounds like his

happend to you. PG can spread like wildfire, so watch that lump for

suspicious signs.

The rule I go by is that EN never ulcerates, and PG does. So if you

see what looks like a blister, that would be an indication of PG. So

far without the purple dot, I'd guess you have EN again. Let's hope so.

Potassium Iodide does help quite a few of us, and it requires a

doctors prescription. It has been used for both EN and PG. It is a

liquid that is added to juice. It is very mild compared to steriods.

Don't take it if you have thyroid problems.

Ouch! bumping an EN lump can aggrivate it. Probably the same for PG,

right Jeff?

Ok, I'm leaving the hard questions to Jeff. In the meantime get the

legs elevated and be VERY alert to ulceration. Hopefully this is EN,

which is the much easier condition to recover from.

Love,

[Guest guest]

can i get the emails in a condensed letter? i am getting so much email i am running out of room... Thanks, Dot Strecker wrote: Hi Hattie,Although I will leave most of your questions to Jeff "our PG expert",I can tell you that EN can sometimes turn into PG. This isn't verytypical, but probably moreso with UC and Crohn's. Sounds like hishappend to you. PG can spread like wildfire, so watch that lump forsuspicious signs.The rule I go by is that EN never ulcerates, and PG does. So if yousee what looks like a blister, that would be an indication of PG. Sofar without the purple dot, I'd guess you have EN again. Let's hope so.Potassium Iodide does help quite a few of us, and it requires adoctors prescription. It has been used

for both EN and PG. It is aliquid that is added to juice. It is very mild compared to steriods.Don't take it if you have thyroid problems.Ouch! bumping an EN lump can aggrivate it. Probably the same for PG,right Jeff?Ok, I'm leaving the hard questions to Jeff. In the meantime get thelegs elevated and be VERY alert to ulceration. Hopefully this is EN,which is the much easier condition to recover from.Love,

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[Guest guest]

Dear Hattie, It sounds like you and i have the same thing,i get the red swollen places with a blister that itches soooo badi had a biopsy done this past year,i have several lesions on my legs and they will not heal,i have tried everything known to man..lol also i have that same ointment the dr. gave you it didnt help me at all,i have been on predesone for well over a year now,amd this last time he started me on imuran,whih the Dr. said was a cancer drug,my legs a little better but the pain is no better at all,sometimes i cannot stand to touch my legs,not even for a sheet to lay on them at night,i just keep hoping and hoping someone will come up with something,I would love to stay in touch with you if you dont mind. Thanks and hang in there, Love Dothattie098 wrote: Hi everyone and especially

I have had UC but had colon removed with J-pouch for cancer 21 years ago. Last year had my first outbreak of EN(lower legs) in 30 years! Most of it responded well to Pred but one lump lingered and developed into PG! ever heard of this happening? Its cleared up now finally, almost a year later with pred. but now I developed one new lump in same place on opposite leg. Need to know if this is PG or EN. Please explain how to tell the difference!! It is warm to the touch and red and a little swollen. I dont remember my PG being warm and it had purple dot in the middle. NOt this. I have my PG medicine ( Protopic) or a new medicine doc gave me called clobetasol propionate for this new lump ( about month old.) Doc didnt look closely at but said hes not sure which it is but to use this new ointment for about 2-3 weeks. On-line it said it's not recommended to be used longer than this. Is it dangerous

to continue with it a little longer? Altho my cases are relatively mild Doc mentioned wanting to use cyclosporin on me because I dont seem to be responding to the pred anymore. Isnt this a little drastic for a mild case? I read something on this site about potassium iodide (I think that was it) and he said it never works. Is that true? Is this over- the -counter or dangerous to try anyway? On the oinment the lump started to get better but then I bumped it just a little, plus went down half milligram of the pred (trying to wean down now am at only 4mg) and it started to get a tiny worse. Wondering what to try next since the doc wants to try the cyclopsorin next. One other question-- Since I am just getting over PG and will always be inclined to it, what is the possibility of getting it in my abdomen when and if I have a percutaneous drain placed in there ( which could remain in for a few weeks) or a

needle biopsy? Doc said because of PG tendency toward "pathergy" anywhere in the body that is subject to trauma of any kind, especially surgery, there is a good liklihood of generating PG in that spot. How true is this? Has anyone here had that happen to them.. getting PG at the cite of surgery or drainage catheter, etc? (My EN and PG have always been confined to lower legs thus far). Sorry so long winded, but Im really needing anwers. Do you think these new outbreaks are somehow related to this infammation/mass in my abbdomen that may be diagnostically drained soon? Thanks, Hattie

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[Guest guest]

hi hattie,

rebecca leaves the hard work to me...lol...j/k rebecca. actually,

hattie, you are quite knowledgeable about this thing. and it might

be a relief to know you have a pretty darn knowledgeable doc there

too. of course the uc then the j-pouch adds a twist to things. i

don't have this, i have cd and no surgeries here, but i belong to

enough groups to add some things here for you. i thought maybe the

best thing to do is infiltrate my responses in your post:

>

> Hi everyone and especially

> I have had UC but had colon removed with J-pouch for cancer 21

years

> ago. Last year had my first outbreak of EN(lower legs) in 30

years!

> Most of it responded well to Pred but one lump lingered and

developed

> into PG! ever heard of this happening?

yes, this can happen. actually, with ibd, ra and some other cases

both en and pg have a more likelyhood of occuring. they can occur

concurrent or at different times.

Its cleared up now finally,

> almost a year later with pred. but now I developed one new lump in

> same place on opposite leg. Need to know if this is PG or EN.

Please

> explain how to tell the difference!!

well, most basically, pg will ulcerate. starts out like a nasty boil

and in about 10-14 days it breaks open and drains. ulceration may

occur then, it might lag (this is what happened to me) and ulcerate

later, the rate of ulceration can really vary, speed up, slow down,

stop, start again...any combo, you name it. i think it has to do

with the amount of inflammation going on in your body (sed rate).

It is warm to the touch and red

> and a little swollen. I dont remember my PG being warm and it had

> purple dot in the middle. NOt this. I have my PG medicine (

> Protopic)

i used protopic on mine, good stuff for pg in it's early stages, if

it gets more stubborn, resistive, continues to ulcerate, a more

agressive approach is necessary.

or a new medicine doc gave me called clobetasol propionate

> for this new lump ( about month old.) Doc didnt look closely at but

> said hes not sure which it is but to use this new ointment for

about

basically, protopic is an immunomodulator. obviously your doc thinks

it is safe to say it is not an infection. protopic would cause an

infection to go nuts, but the protopic helps settle down

the " overactive " and autoinflammatory cells doing the ulceration.

> 2-3 weeks. On-line it said it's not recommended to be used longer

> than this. Is it dangerous to continue with it a little longer?

frankly and personally, i don't think so. is some potential

degregation to the skin worth putting up with pg??? i don't think

so. i used prototopic on my pg for 9 months.

> Altho my cases are relatively mild Doc mentioned wanting to use

> cyclosporin on me because I dont seem to be responding to the pred

> anymore.

i think the cyclo is a preference over the pred. i started on pred

and moved to cyclo then to protopic (oral tacrolimus), now on

something different yet (see below). the pred was not very effective

at the rate of my ulceration. i was at 120mg a day in order for the

ulceration to even slow down! cyclo was slow responding so we went

to the tacrolimus. worked great, but i had to get off of it due to

reduced kidney functions.

Isnt this a little drastic for a mild case?

no, i don't think so, considering the alternatives...being pred or

continuing to put up with the pg.

I read

> something on this site about potassium iodide (I think that was it)

> and he said it never works. Is that true? Is this over- the -

counter

> or dangerous to try anyway?

skii is a treatment for both en and pg. it is rx. personally, never

used it but i would not hesitate. it has been around a long time and

it has a known track record. as with any rx, one can get into

trouble with them if not managed correctly.

On the oinment the lump started to get

> better but then I bumped it just a little, plus went down half

> milligram of the pred (trying to wean down now am at only 4mg) and

it

> started to get a tiny worse.

> Wondering what to try next since the doc wants to try the

cyclopsorin

> next.

personally, i would go with the cyclo or the tacro. currently i am

on methotexate (mtx) as an immunomodulator and infliximab

(remicade). these control my cd and my pg. both of these are also

treatments for pg. you might want to ask the doc about these as

well. you might want to ask him about a biopsy, since he is not sure

what it is. dangerous rx's to play with if you don't really know

what you are dealing with. i assume he does, but you didn't mention

anything about a biopsy.

One other question-- Since I am just getting over PG and will

> always be inclined to it, what is the possibility of getting it in

my

> abdomen when and if I have a percutaneous drain placed in there (

> which could remain in for a few weeks) or a needle biopsy?

given your j-pouch and history, unfortunately, high.

Doc said

> because of PG tendency toward " pathergy " anywhere in the body that

is

> subject to trauma of any kind, especially surgery, there is a good

> liklihood of generating PG in that spot. How true is this?

absolutely. pathergy is a known condition with pg and is pretty much

unique to this type of ulceration. you have a very knowledgeable

doc. don't lose him!

Has

> anyone here had that happen to them.. getting PG at the cite of

> surgery or drainage catheter, etc? (My EN and PG have always been

> confined to lower legs thus far). Sorry so long winded, but Im

> really needing anwers. Do you think these new outbreaks are

> somehow related to this infammation/mass in my abbdomen that may be

> diagnostically drained soon?

could be, but that is a little out of my league on that question.

Thanks, Hattie

you bet, and good luck to you,

jeff

>

[Guest guest]

hi hattie,

rebecca leaves the hard work to me...lol...j/k rebecca. actually,

hattie, you are quite knowledgeable about this thing. and it might

be a relief to know you have a pretty darn knowledgeable doc there

too. of course the uc then the j-pouch adds a twist to things. i

don't have this, i have cd and no surgeries here, but i belong to

enough groups to add some things here for you. i thought maybe the

best thing to do is infiltrate my responses in your post:

>

> Hi everyone and especially

> I have had UC but had colon removed with J-pouch for cancer 21

years

> ago. Last year had my first outbreak of EN(lower legs) in 30

years!

> Most of it responded well to Pred but one lump lingered and

developed

> into PG! ever heard of this happening?

yes, this can happen. actually, with ibd, ra and some other cases

both en and pg have a more likelyhood of occuring. they can occur

concurrent or at different times.

Its cleared up now finally,

> almost a year later with pred. but now I developed one new lump in

> same place on opposite leg. Need to know if this is PG or EN.

Please

> explain how to tell the difference!!

well, most basically, pg will ulcerate. starts out like a nasty boil

and in about 10-14 days it breaks open and drains. ulceration may

occur then, it might lag (this is what happened to me) and ulcerate

later, the rate of ulceration can really vary, speed up, slow down,

stop, start again...any combo, you name it. i think it has to do

with the amount of inflammation going on in your body (sed rate).

It is warm to the touch and red

> and a little swollen. I dont remember my PG being warm and it had

> purple dot in the middle. NOt this. I have my PG medicine (

> Protopic)

i used protopic on mine, good stuff for pg in it's early stages, if

it gets more stubborn, resistive, continues to ulcerate, a more

agressive approach is necessary.

or a new medicine doc gave me called clobetasol propionate

> for this new lump ( about month old.) Doc didnt look closely at but

> said hes not sure which it is but to use this new ointment for

about

basically, protopic is an immunomodulator. obviously your doc thinks

it is safe to say it is not an infection. protopic would cause an

infection to go nuts, but the protopic helps settle down

the " overactive " and autoinflammatory cells doing the ulceration.

> 2-3 weeks. On-line it said it's not recommended to be used longer

> than this. Is it dangerous to continue with it a little longer?

frankly and personally, i don't think so. is some potential

degregation to the skin worth putting up with pg??? i don't think

so. i used prototopic on my pg for 9 months.

> Altho my cases are relatively mild Doc mentioned wanting to use

> cyclosporin on me because I dont seem to be responding to the pred

> anymore.

i think the cyclo is a preference over the pred. i started on pred

and moved to cyclo then to protopic (oral tacrolimus), now on

something different yet (see below). the pred was not very effective

at the rate of my ulceration. i was at 120mg a day in order for the

ulceration to even slow down! cyclo was slow responding so we went

to the tacrolimus. worked great, but i had to get off of it due to

reduced kidney functions.

Isnt this a little drastic for a mild case?

no, i don't think so, considering the alternatives...being pred or

continuing to put up with the pg.

I read

> something on this site about potassium iodide (I think that was it)

> and he said it never works. Is that true? Is this over- the -

counter

> or dangerous to try anyway?

skii is a treatment for both en and pg. it is rx. personally, never

used it but i would not hesitate. it has been around a long time and

it has a known track record. as with any rx, one can get into

trouble with them if not managed correctly.

On the oinment the lump started to get

> better but then I bumped it just a little, plus went down half

> milligram of the pred (trying to wean down now am at only 4mg) and

it

> started to get a tiny worse.

> Wondering what to try next since the doc wants to try the

cyclopsorin

> next.

personally, i would go with the cyclo or the tacro. currently i am

on methotexate (mtx) as an immunomodulator and infliximab

(remicade). these control my cd and my pg. both of these are also

treatments for pg. you might want to ask the doc about these as

well. you might want to ask him about a biopsy, since he is not sure

what it is. dangerous rx's to play with if you don't really know

what you are dealing with. i assume he does, but you didn't mention

anything about a biopsy.

One other question-- Since I am just getting over PG and will

> always be inclined to it, what is the possibility of getting it in

my

> abdomen when and if I have a percutaneous drain placed in there (

> which could remain in for a few weeks) or a needle biopsy?

given your j-pouch and history, unfortunately, high.

Doc said

> because of PG tendency toward " pathergy " anywhere in the body that

is

> subject to trauma of any kind, especially surgery, there is a good

> liklihood of generating PG in that spot. How true is this?

absolutely. pathergy is a known condition with pg and is pretty much

unique to this type of ulceration. you have a very knowledgeable

doc. don't lose him!

Has

> anyone here had that happen to them.. getting PG at the cite of

> surgery or drainage catheter, etc? (My EN and PG have always been

> confined to lower legs thus far). Sorry so long winded, but Im

> really needing anwers. Do you think these new outbreaks are

> somehow related to this infammation/mass in my abbdomen that may be

> diagnostically drained soon?

could be, but that is a little out of my league on that question.

Thanks, Hattie

you bet, and good luck to you,

jeff

>

[Guest guest]

hi hattie,

rebecca leaves the hard work to me...lol...j/k rebecca. actually,

hattie, you are quite knowledgeable about this thing. and it might

be a relief to know you have a pretty darn knowledgeable doc there

too. of course the uc then the j-pouch adds a twist to things. i

don't have this, i have cd and no surgeries here, but i belong to

enough groups to add some things here for you. i thought maybe the

best thing to do is infiltrate my responses in your post:

>

> Hi everyone and especially

> I have had UC but had colon removed with J-pouch for cancer 21

years

> ago. Last year had my first outbreak of EN(lower legs) in 30

years!

> Most of it responded well to Pred but one lump lingered and

developed

> into PG! ever heard of this happening?

yes, this can happen. actually, with ibd, ra and some other cases

both en and pg have a more likelyhood of occuring. they can occur

concurrent or at different times.

Its cleared up now finally,

> almost a year later with pred. but now I developed one new lump in

> same place on opposite leg. Need to know if this is PG or EN.

Please

> explain how to tell the difference!!

well, most basically, pg will ulcerate. starts out like a nasty boil

and in about 10-14 days it breaks open and drains. ulceration may

occur then, it might lag (this is what happened to me) and ulcerate

later, the rate of ulceration can really vary, speed up, slow down,

stop, start again...any combo, you name it. i think it has to do

with the amount of inflammation going on in your body (sed rate).

It is warm to the touch and red

> and a little swollen. I dont remember my PG being warm and it had

> purple dot in the middle. NOt this. I have my PG medicine (

> Protopic)

i used protopic on mine, good stuff for pg in it's early stages, if

it gets more stubborn, resistive, continues to ulcerate, a more

agressive approach is necessary.

or a new medicine doc gave me called clobetasol propionate

> for this new lump ( about month old.) Doc didnt look closely at but

> said hes not sure which it is but to use this new ointment for

about

basically, protopic is an immunomodulator. obviously your doc thinks

it is safe to say it is not an infection. protopic would cause an

infection to go nuts, but the protopic helps settle down

the " overactive " and autoinflammatory cells doing the ulceration.

> 2-3 weeks. On-line it said it's not recommended to be used longer

> than this. Is it dangerous to continue with it a little longer?

frankly and personally, i don't think so. is some potential

degregation to the skin worth putting up with pg??? i don't think

so. i used prototopic on my pg for 9 months.

> Altho my cases are relatively mild Doc mentioned wanting to use

> cyclosporin on me because I dont seem to be responding to the pred

> anymore.

i think the cyclo is a preference over the pred. i started on pred

and moved to cyclo then to protopic (oral tacrolimus), now on

something different yet (see below). the pred was not very effective

at the rate of my ulceration. i was at 120mg a day in order for the

ulceration to even slow down! cyclo was slow responding so we went

to the tacrolimus. worked great, but i had to get off of it due to

reduced kidney functions.

Isnt this a little drastic for a mild case?

no, i don't think so, considering the alternatives...being pred or

continuing to put up with the pg.

I read

> something on this site about potassium iodide (I think that was it)

> and he said it never works. Is that true? Is this over- the -

counter

> or dangerous to try anyway?

skii is a treatment for both en and pg. it is rx. personally, never

used it but i would not hesitate. it has been around a long time and

it has a known track record. as with any rx, one can get into

trouble with them if not managed correctly.

On the oinment the lump started to get

> better but then I bumped it just a little, plus went down half

> milligram of the pred (trying to wean down now am at only 4mg) and

it

> started to get a tiny worse.

> Wondering what to try next since the doc wants to try the

cyclopsorin

> next.

personally, i would go with the cyclo or the tacro. currently i am

on methotexate (mtx) as an immunomodulator and infliximab

(remicade). these control my cd and my pg. both of these are also

treatments for pg. you might want to ask the doc about these as

well. you might want to ask him about a biopsy, since he is not sure

what it is. dangerous rx's to play with if you don't really know

what you are dealing with. i assume he does, but you didn't mention

anything about a biopsy.

One other question-- Since I am just getting over PG and will

> always be inclined to it, what is the possibility of getting it in

my

> abdomen when and if I have a percutaneous drain placed in there (

> which could remain in for a few weeks) or a needle biopsy?

given your j-pouch and history, unfortunately, high.

Doc said

> because of PG tendency toward " pathergy " anywhere in the body that

is

> subject to trauma of any kind, especially surgery, there is a good

> liklihood of generating PG in that spot. How true is this?

absolutely. pathergy is a known condition with pg and is pretty much

unique to this type of ulceration. you have a very knowledgeable

doc. don't lose him!

Has

> anyone here had that happen to them.. getting PG at the cite of

> surgery or drainage catheter, etc? (My EN and PG have always been

> confined to lower legs thus far). Sorry so long winded, but Im

> really needing anwers. Do you think these new outbreaks are

> somehow related to this infammation/mass in my abbdomen that may be

> diagnostically drained soon?

could be, but that is a little out of my league on that question.

Thanks, Hattie

you bet, and good luck to you,

jeff

>

[Guest guest]

Thanks so much for your reply to my questions! I'm not sure if this latest red bump is EN or PG... or remote possibility, something else. Doc had me using a strong steriod ointment called Clobetasol Propionate but I have used it for several weeks and its not much better. Would it hurt if I tried some protopic ointment? Could it make things worse if it is not PG? No blistering or ulcers.. just red bump on lower leg near ankle. Its not very bad but I dont want it to turn into a bad case... been there done that!. Im still on 4mg pred and the bump has been at standstill on the clobetasol propionate and the RX says not to stay on it any longer than a few weeks so i really want to try the Protopic now. Thanks so much!!!!!! hattie

[Guest guest]

Thanks so much for your reply to my questions! I'm not sure if this latest red bump is EN or PG... or remote possibility, something else. Doc had me using a strong steriod ointment called Clobetasol Propionate but I have used it for several weeks and its not much better. Would it hurt if I tried some protopic ointment? Could it make things worse if it is not PG? No blistering or ulcers.. just red bump on lower leg near ankle. Its not very bad but I dont want it to turn into a bad case... been there done that!. Im still on 4mg pred and the bump has been at standstill on the clobetasol propionate and the RX says not to stay on it any longer than a few weeks so i really want to try the Protopic now. Thanks so much!!!!!! hattie

[Guest guest]

Thanks Jeff for your response. Do know if it could make things worse if I used the protopic ointment on the red bump if it turned out not to be PG but EN or even something else instead? Its not responding to the clobetasol propionate ointment or the 4 mg of pred. Thanks for your help! hattie

[Guest guest]

Thanks Jeff for your response. Do know if it could make things worse if I used the protopic ointment on the red bump if it turned out not to be PG but EN or even something else instead? Its not responding to the clobetasol propionate ointment or the 4 mg of pred. Thanks for your help! hattie

[Guest guest]

Thanks Jeff for your response. Do know if it could make things worse if I used the protopic ointment on the red bump if it turned out not to be PG but EN or even something else instead? Its not responding to the clobetasol propionate ointment or the 4 mg of pred. Thanks for your help! hattie

[Guest guest]

hattie,

not sure how you got the protopic (since it is rx) if your doc did not

intend for you to use it. was it maybe a different lump? since we

dont' know for sure what it is, you need to call your doc first. let

me explain. if, by chance, it is an infection, you could be in a heap

of trouble. if it is truely autoinflammation, such as en, pg, and

there are others, it will either help or do nothing. but you have to

make sure! there could be other issues and other derm conditions that

are contradictary to prograf i am not aware of, that is why you need to

be sure to keep under a doc's care for this.

jeff

>

> Thanks Jeff for your response. Do know if it could make things worse

if I

> used the protopic ointment on the red bump if it turned out not to be

PG but EN

> or even something else instead? Its not responding to the clobetasol

> propionate ointment or the 4 mg of pred. Thanks for your help! hattie

>