Re: CELLCEPT QUESTION

[Guest guest]

nina,

welcome back. do you remember me?

cellcept. never been on it, but about everything else including

cyclosplorine. yes, the cyclo will have that effect over time.

smart doctor you have there. cellcept is another form of

immunomdulation. one of many drugs born from the organ transplant

era. they found most immunomodulators can be used as off label for

diseases such as cd and pg. so cellcept is not knew, but it's off

label uses are in many cases, and it is particularily for pg.

as far as dosage. there are guidelines depending on the situation.

your blood tests will tell him more. " normally " , they will start at

the package directions dosage based on such things as body weight,

etc. then later, they take bloods to see how much you can withstand

as compared to the effect it is having on your pg. most teaching

hospitals and research derms should be able to help him. i suggest

he call the derm dept at northwestern college in chicago. world

reknown for their treatment in difficult cases of pg. cleveland

clinic is another. he should have contacts. he might also go via

the ada..american dermotology association. i know my research derm

belongs to this. me 2 cents is, he is on the right approach.

jeff,

cd,

pg

>

> Hello Everyone,

> It is me Nina. I have not been online for quite some time.

> I have been taking cyclosporine to treat my PG for 10 years and

now my kidneys and liver are acting up to the point where I was put

on a lower dose of cyclosporine and prednisone was once again added.

Currently I take 100 mg of Cyclosporine two times a day and 40 mg of

prednisone once a day.

> My Specialist (Infectious Disease) doctor is looking at trying

something called CELLCEPT. So, my question, is anyone taking

Cellcept to treat their PG and if yes, how much and is it working;.

This new drug was recommended by another derm but the derm was not

specific with dosing amounts or if it would even work. So my

specialist is trying to find a derm who can help so I figured i would

ask on this site and see what happens.

> I would really appreciate any insight anyone may be able to

offer.

> Take Care Everyone.

> Nina (PG Patient since 1996)

[Guest guest]

Greetings group,

Yes, it is Elaine, and I have not been on-line in quite some time.

For that I apologize, but I have been pretty ill since Christmas. I

believe that the last communication was to explain how I fainted and

ended up in the hospital.

Well, I just got out of the hospital again. I was at Stanford for

the last six days, as 'gas' was found in my leg. The result of that

gas was an infection. The wounds have grown terribly, so it was

almost bound to happen.

I am responding to the Cellcept question, as that is what I had been

on since just before Christmas. I started with a dose of 500 mgs.

and went to 1000 mgs. per day. When I was bumped up to 2000 mgs., I

started to feel ill. I was taken off of Cellcept just before I

landed in the hospital last week.

At this point, we do not know if my feeling so sick (flu-like

symptoms, chills, fevers, high blood pressure, and very high heart

rates)was due to the Cellcept or the infection. Truly, I felt

terrible with the Cellcept, but the doctors are not convinced that it

was the issue.

In any case, I had to get off of most everything because of the mega-

antibiotics, so the wounds are running wild. I will post the picture

to my photos, but I warn you that they are very awful to look at.

I have been on IVIG, but that appears to have stopped working for the

most part. I am still on 25 mgs. of Prednisone and was back up to 40

mgs., but that does not seem to have much of an impact any longer. I

was also off of Methatrexate, but I have started that again this week

to see if it offers any relief for the pain and inflamation of my

leg.

Once the antibiotics are finished, which will be next Thursday, and

my labs are okay, I will then begin Remicade again. The doctors

think that I did not give it a fair chance, so here we go again.

Hopefully, it will work. The plan is to have 15 mgs. of Methatrexate

each week, the Remicade infusions on a more frequent basis (possibly

adjusted doses to be administered every 4 weeks instead of 8), and

Prednisone at 25 mgs. The Cellcept and IVIG will be discontinued.

I have missed the group, and I hope that my energy is such that I can

access the site on a more regular basis. Truly, this group has

provided me with knowledge, hope, faith, and an outlet to express how

this feels.

I hope that you are all doing well, and I thank you for your time.

Love,

Elaine

PG/RA

> >

> > Hello Everyone,

> > It is me Nina. I have not been online for quite some time.

> > I have been taking cyclosporine to treat my PG for 10 years and

> now my kidneys and liver are acting up to the point where I was put

> on a lower dose of cyclosporine and prednisone was once again

added.

> Currently I take 100 mg of Cyclosporine two times a day and 40 mg

of

> prednisone once a day.

> > My Specialist (Infectious Disease) doctor is looking at trying

> something called CELLCEPT. So, my question, is anyone taking

> Cellcept to treat their PG and if yes, how much and is it

working;.

> This new drug was recommended by another derm but the derm was not

> specific with dosing amounts or if it would even work. So my

> specialist is trying to find a derm who can help so I figured i

would

> ask on this site and see what happens.

> > I would really appreciate any insight anyone may be able to

> offer.

> > Take Care Everyone.

> > Nina (PG Patient since 1996)

>

[Guest guest]

elaine:

i figured something must be going on since you had not been on. i

know when you can manage it, you have been here. i was concerned for

you. i am so sorry to hear how things are not coming along. gas in

leg? interesting. i would be very interested in seeing the pics.

i think with the known treatments and your current state, your docs

are making good decisions. as you know, i was also one that had a

difficult case. in most instances, there is not one treatment that

just simply works. pg is so difficult to get under control and keep

under control for some. not telling you anything new.

yes, the cellcept, like many of the defenses for this disease

sometimes is not very agreeable. my hunch here, after reading your

hospital stay account, is that your symtoms were a result of both the

infection and the cellcept. remember (and i am sure your docs know

this as well), cellcept is an immunomodulator. so is remicade,

although it is popular to term it as a " biologic " . but remicade also

acts as an immunomodulator. and of course, the mtx is important

because it helps so that you do not build up antibodies against the

remicade. the pred is for immediate relief because the other

treatments don't kick in immediately.

i am glad you are well enough to be out of the hospital and i am

hopeful that your new treatment plan takes hold and you start seeing

some relief soon.

love and your friend,

jeff,

pg,

cd

>

> Greetings group,

> Yes, it is Elaine, and I have not been on-line in quite some time.

> For that I apologize, but I have been pretty ill since Christmas.

I

> believe that the last communication was to explain how I fainted

and

> ended up in the hospital.

> Well, I just got out of the hospital again. I was at Stanford for

> the last six days, as 'gas' was found in my leg. The result of

that

> gas was an infection. The wounds have grown terribly, so it was

> almost bound to happen.

> I am responding to the Cellcept question, as that is what I had

been

> on since just before Christmas. I started with a dose of 500 mgs.

> and went to 1000 mgs. per day. When I was bumped up to 2000 mgs.,

I

> started to feel ill. I was taken off of Cellcept just before I

> landed in the hospital last week.

> At this point, we do not know if my feeling so sick (flu-like

> symptoms, chills, fevers, high blood pressure, and very high heart

> rates)was due to the Cellcept or the infection. Truly, I felt

> terrible with the Cellcept, but the doctors are not convinced that

it

> was the issue.

> In any case, I had to get off of most everything because of the

mega-

> antibiotics, so the wounds are running wild. I will post the

picture

> to my photos, but I warn you that they are very awful to look at.

> I have been on IVIG, but that appears to have stopped working for

the

> most part. I am still on 25 mgs. of Prednisone and was back up to

40

> mgs., but that does not seem to have much of an impact any longer.

I

> was also off of Methatrexate, but I have started that again this

week

> to see if it offers any relief for the pain and inflamation of my

> leg.

> Once the antibiotics are finished, which will be next Thursday, and

> my labs are okay, I will then begin Remicade again. The doctors

> think that I did not give it a fair chance, so here we go again.

> Hopefully, it will work. The plan is to have 15 mgs. of

Methatrexate

> each week, the Remicade infusions on a more frequent basis

(possibly

> adjusted doses to be administered every 4 weeks instead of 8), and

> Prednisone at 25 mgs. The Cellcept and IVIG will be discontinued.

> I have missed the group, and I hope that my energy is such that I

can

> access the site on a more regular basis. Truly, this group has

> provided me with knowledge, hope, faith, and an outlet to express

how

> this feels.

> I hope that you are all doing well, and I thank you for your time.

> Love,

> Elaine

> PG/RA

[Guest guest]

Hi Jeff,

Oh, how wonderful it is to connect with you again. You put things in

terms that I understand and provide the best perspective.

Thanks for the support. I cannot tell you how much it means to me,

especially since you have gone through this. Just that fact gives me

hope that this ordeal will eventually have a good ending.

I started to get very down on myself and everything else, and I was

in tears tonight after getting stuck on my new 'ride:' Wally the

. I just cannot believe how active I was before all of this,

how I have had bouts of relief, and am now in a wheelchair for long

distances and using a walker for the short hauls.

I decided to go on-line, and my tears went away upon reading your

message. While we have not met, nor have we spoken one-on-one, it is

a very powerful relationship for me, so thank you very much for the

concern, love, and support. I hope you know how much it all helps.

I did submit the photos, so I hope they can be stomached. You will

see how much they have progressed around my leg. Hey, I am thinking

that once this is healed, you may be able to help me with a good

story to explain the scar :-) Today, one person asked if I have been

hit by a car, and another asked if I had a cycling accident. Those

are boring, so I have to think of something better. As you know, it

is way to tiring to explain PG!

Thanks, again, for everything.

Love,

Elaine

PG/RA

> >

> > Greetings group,

> > Yes, it is Elaine, and I have not been on-line in quite some

time.

> > For that I apologize, but I have been pretty ill since

Christmas.

> I

> > believe that the last communication was to explain how I fainted

> and

> > ended up in the hospital.

> > Well, I just got out of the hospital again. I was at Stanford

for

> > the last six days, as 'gas' was found in my leg. The result of

> that

> > gas was an infection. The wounds have grown terribly, so it was

> > almost bound to happen.

> > I am responding to the Cellcept question, as that is what I had

> been

> > on since just before Christmas. I started with a dose of 500

mgs.

> > and went to 1000 mgs. per day. When I was bumped up to 2000

mgs.,

> I

> > started to feel ill. I was taken off of Cellcept just before I

> > landed in the hospital last week.

> > At this point, we do not know if my feeling so sick (flu-like

> > symptoms, chills, fevers, high blood pressure, and very high

heart

> > rates)was due to the Cellcept or the infection. Truly, I felt

> > terrible with the Cellcept, but the doctors are not convinced

that

> it

> > was the issue.

> > In any case, I had to get off of most everything because of the

> mega-

> > antibiotics, so the wounds are running wild. I will post the

> picture

> > to my photos, but I warn you that they are very awful to look

at.

> > I have been on IVIG, but that appears to have stopped working for

> the

> > most part. I am still on 25 mgs. of Prednisone and was back up

to

> 40

> > mgs., but that does not seem to have much of an impact any

longer.

> I

> > was also off of Methatrexate, but I have started that again this

> week

> > to see if it offers any relief for the pain and inflamation of my

> > leg.

> > Once the antibiotics are finished, which will be next Thursday,

and

> > my labs are okay, I will then begin Remicade again. The doctors

> > think that I did not give it a fair chance, so here we go again.

> > Hopefully, it will work. The plan is to have 15 mgs. of

> Methatrexate

> > each week, the Remicade infusions on a more frequent basis

> (possibly

> > adjusted doses to be administered every 4 weeks instead of 8),

and

> > Prednisone at 25 mgs. The Cellcept and IVIG will be discontinued.

> > I have missed the group, and I hope that my energy is such that I

> can

> > access the site on a more regular basis. Truly, this group has

> > provided me with knowledge, hope, faith, and an outlet to express

> how

> > this feels.

> > I hope that you are all doing well, and I thank you for your time.

> > Love,

> > Elaine

> > PG/RA

>

[Guest guest]

elaine,

i can't tell you what your message did to me except to say it sent

goose bumps all over me. i never realized i could have this much

influence with someone on discussing this type of thing. in all

honesty tho, you have incredible courage. having been there, i know

exactly what this pain is like....you just can't describe it. and you

still work! i couldn't do that, the pain...but also the narcotics.

i don't like pain. i know you are off and on work, but your forward

looking attitude is certainly a lesson for others. you indeed are

remarkable in my eyes!

yes, i am living proof. so yes, i hold out that there WILL be

resolution to your pg issues. there is no cure, but there is

control...it is a matter of finding the right combinations. there is

a lot of luck associated with this process, but it is a building

process. attempting to answer why one thing worked while something

else failed and building on that history.

so you lived a stone's throw away from me, eh? wow. incredible.

yeah, getting pretty desparate in my job situation, but i have to

stay disciplined enough to keep any of that from entering the image i

am trying to project in my interviews.

let me say this elaine. if you need to talk to someone, if you need

to talk to me, let me know, please. i have vonage so i can call

anyplace in north america free. we can always exchange phone

numbers, i have no problem doing that at all. you be the judge but

do keep it in mind, that option is open to you for the asking.

take care,

jeff,

pg,

cd

>

> Hi Jeff,

> Oh, how wonderful it is to connect with you again. You put things

in

> terms that I understand and provide the best perspective.

> Thanks for the support. I cannot tell you how much it means to me,

> especially since you have gone through this. Just that fact gives

me

> hope that this ordeal will eventually have a good ending.

> I started to get very down on myself and everything else, and I was

> in tears tonight after getting stuck on my new 'ride:' Wally the

> . I just cannot believe how active I was before all of this,

> how I have had bouts of relief, and am now in a wheelchair for long

> distances and using a walker for the short hauls.

> I decided to go on-line, and my tears went away upon reading your

> message. While we have not met, nor have we spoken one-on-one, it

is

> a very powerful relationship for me, so thank you very much for the

> concern, love, and support. I hope you know how much it all helps.

> I did submit the photos, so I hope they can be stomached. You will

> see how much they have progressed around my leg. Hey, I am

thinking

> that once this is healed, you may be able to help me with a good

> story to explain the scar :-) Today, one person asked if I have

been

> hit by a car, and another asked if I had a cycling accident. Those

> are boring, so I have to think of something better. As you know,

it

> is way to tiring to explain PG!

> Thanks, again, for everything.

> Love,

> Elaine

> PG/RA