cyclosporine

[Guest guest]

,

<A

HREF= " http://www.intelihealth.com/IH/ihtIH?d=dmtSimple & c=213840 & p=~br,AOL|~st,

8124|~r,WSAOL002|~b,*| " >Click here: InteliHealth - Home to s Hopkins

Health Information: InteliHealth Home</A> Here is some info on

cyclosporine, and here is the original site for looking up drugs: <A

HREF= " aol://4344:1655.onlpha99.12415826.611606826 " >Click here: Online

Pharmacy</A>

(AIH)

[Guest guest]

Luane,

How does this dear little boy deal with all this illness?

J

>From: BBNLU@...

>Reply- onelist

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>Subject: Re: [ ] Cyclosporine

>Date: Wed, 8 Sep 1999 16:56:01 EDT

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>From: BBNLU@...

>

>Hi ...

>Tyler my 16 yr old son who has Crohns, Rhuematoid Arthritis, PSC and AIH

>has

>been on cyclosporin for over 1 yr...Since being on this he is doing better

>than ever...Although the liver stuff was newly diagnose this past

>April...He

>take urso for this among many other drugs for the other diseases...But he

>is

>doing well ...no prednisone and we saw no side effects from the

>clyclosporin...

>Luanne Ty's mom

>

>---------------------------

[Guest guest]

Oops, my mistake, he is not so little and at age 16 I doubt if he would like

being called little. Very sorry Ty. Still would like to know how he deals

with all this and how Mom does also.

J

>From: " susan johnson " <shireen42@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Cyclosporine

>Date: Wed, 08 Sep 1999 19:41:22 PDT

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>From: " susan johnson " <shireen42@...>

>

>Luane,

>

>How does this dear little boy deal with all this illness?

>

> J

>

>

>>From: BBNLU@...

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] Cyclosporine

>>Date: Wed, 8 Sep 1999 16:56:01 EDT

>>MIME-Version: 1.0

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>>From: BBNLU@...

>>

>>Hi ...

>>Tyler my 16 yr old son who has Crohns, Rhuematoid Arthritis, PSC and AIH

>>has

>>been on cyclosporin for over 1 yr...Since being on this he is doing better

>>than ever...Although the liver stuff was newly diagnose this past

>>April...He

>>take urso for this among many other drugs for the other diseases...But he

>>is

>>doing well ...no prednisone and we saw no side effects from the

>>clyclosporin...

>>Luanne Ty's mom

>>

>>---------------------------

[Guest guest]

Thanks for your answer on the Docs...Tyler is the greatest and is dealing

with things very well...I wonder sometimes how he does it...Right now like I

said he is doing the best in a long time...So as far as he is concerned he is

not sick at all...He gives himself his shot and takes his meds and doew what

needs to be done ..with a smile on his face...

He is the greatest even if I do say so myself...

Luanne Ty's mom

[Guest guest]

Thanks for the info. I guess my doctor has decided to up the Imuran instead

of having me take Cyclosporine. So today I will start with 100mg of Imuran.

This second biopsy now shows fibrosis and cirrhosis.

He says he thinks I have several years before things get real serious. And,

I say, let's pray for remission!!

Thanks again.

Warmly,

[Guest guest]

Hi ...

You have my prayers.

Have a good day, and remember...Laughter is the music of a happy heart, love

is it's sustenance. Sooooo...laugh a lot, it is healing.

Joan, AIH, PBC, HBP

Florida

[Guest guest]

----------

,

I am on cyclosporin, 100mg in the morning and 100mg in the evening. The

only side affect is excess hair caused from pred has got even worse with

cyclosporin and sun spots have appeared all over me. Causes also high blood

pressure from time to time so I am on medication for that. It also has had

an affect on my kidneys, but thank God they have rectified that.

SueB.

[Guest guest]

,

I just read the other day that the best course of treatment is to increase

Imuran rather than Prednisone. I've known from the start that I might have

to eventually have an increase in my Imuran dose but so far it hasn't been

necessary. One thing they don't want to do is increase the Prednisone

except as a last resort.

Does your doctor have any theories about why your cirrhosis has developed

despite the meds? Does this mean you're resistant somehow to treatment?

Or that it is just a matter of dosage adjustment? Hopefully they'll hit on

the magic combination and you will go into a permanent remission. I'm

certainly hoping that for myself.

Take care,

Geri

[Guest guest]

Apparently not all meds work on all people. My doctor said that " if my meds

work " , which leads me to believe that sometimes they don't. Same way with

different symptoms, some will be the same with some people and some will not,

because we are all different. Lynn

Geri Spang wrote:

> From: Geri Spang <spangs@...>

>

> ,

> I just read the other day that the best course of treatment is to increase

> Imuran rather than Prednisone. I've known from the start that I might have

> to eventually have an increase in my Imuran dose but so far it hasn't been

> necessary. One thing they don't want to do is increase the Prednisone

> except as a last resort.

>

> Does your doctor have any theories about why your cirrhosis has developed

> despite the meds? Does this mean you're resistant somehow to treatment?

> Or that it is just a matter of dosage adjustment? Hopefully they'll hit on

> the magic combination and you will go into a permanent remission. I'm

> certainly hoping that for myself.

> Take care,

> Geri

>

>

> ---------------------------

[Guest guest]

Geri:

He did say that he thinks there is a possibility that the first biopsy was

not a true representation of what was going on, although he is not 100% sure

of that. He did seem a bit surprised to find cirrhosis now. However, I was

told that he uses a " harpoon " to get the biopsy, as he likes a nice big

sample. Maybe the first sample was too little.

You are right. They are increasing the Imuran to be able to decrease the

Prednisone.

One thought I had had and maybe you know the answer. Does the liver

deteriorate equally throughout, or, does it deteriorate in patches? That

would account for the discrepancies in biopsies.

Warmly,

gina

[Guest guest]

In a message dated 09/25/1999 1:00:50 PM Eastern Daylight Time,

55mia@... writes:

>

> One thought I had had and maybe you know the answer. Does the liver

> deteriorate equally throughout, or, does it deteriorate in patches? That

> would account for the discrepancies in biopsies.

>

,

I heard that it does not deteriorate in the same way equally throughout the

liver---that when they do a needle biopsy that they can get a piece that is

better or worse than the rest of the liver---it is still the best way they

have of telling what we have and how it seems to be progressing. Can't wait

to hear what the other have to say. Joan in PA

[Guest guest]

Have any of you taken cyclosporine? Is so, how was it?

God Bless all of you,

Rosemary

[Guest guest]

Rosemary... search Hepatitis Central..... there is a section in there

about treating children, who have AIH, with cyclosporine and the

results. Cyclosporine used to be used with prednisone as an anti

rejection immuno in transplant patients. Most of the transplanted

patients I know, now take FK506 (Prograf) instead (including myself), as

there are less undsirable side effects .

jerry

[Guest guest]

Rosemary

Tyler has been on cyclosporine for almost 3 yrs....it was diagnosed for his

Rhuematoid Arthritis....It is one of the things that has been him with his RA

problems the most....although he still has to take other RA meds...celebrex

and that is one of the reasons he was on the Remicade...that was stopped in

the end of August...

Luanne Ty's mom

[Guest guest]

Sue,Debbie(fla),, Betsy.

Hi..Just wanted to let you know what I know about cyclosporine....My son Tyler who is 18 has been on it for just 3 yrs now...and no he has not had a transplant YET.....In fact he was started on it before he was even diagnosed with liver disease...he was diagnosed with AIH and PSC...about 8 months later.....

He was started on it because no matter what meds they were giving him...lots of them ...he was not doing well....once the cyclosporine was started we started seeing inprovement almost right away...At the time he was being treated for Crohns...diagnosed at 9 and Rhuematoid Arthritis and Vasculitis....he was like I said taking many meds...but the Vasculitis and RA were out of control...he had spent the last 7 months of school on home bound because he could not walk...his legs and feet were always very....and I mean very swollen and painful....it would almost always have this terrible rash on legs,arms,feet and face....to the point that his skin was burning up.....when they started the cyclo is got better ....they lowered his dose this past fall but when the rash and swelling started coming back he had to go back up....He has taken 123mg 2x's a day from the beginning...was lowered to 75 2x's a day and like I said was put back up with a couple of weeks....

Ty still takes alot of meds besides his cyclo....one of them being pred....which was started back up this past fall after being off of it for a couple of years.....He is on low doses now...and hopefully will be off completely by Christmas.....he is weaned off very slowly....he takes 10 different meds at last count....

He spent almost the entire winter in the hosp...but thankfully is doing better now....and will graduate HS next week....

He never had any trouble tolerating the cyclo....and I truly feel it is one of the meds that has helped him the most....

The other thing that has helped him alot is his Remicade infusions....which is for RA and Crohns....he was at his best ...almost 10 months....getting an infusion every month....when on the 10 one he went into anaphaxic shock...so they were stopped....with in 3 weeks he started having problems...and went down hill quickly...thus all the hosp time....so they have started them back up...giving the antidote first...The first infusion went well...they also run it very slowly...the second one he went into shock...but they knew that he needed it so they waited abit and ran it even slower....We are supposed to go this mon for another one....but he has a cold...and your can not get one if you are sick...so they have to reschedule....Never a dull moment....

Well I hope I have given you a little insight to cyclo.....It smells terrible...and Ty hates the taste....but he takes it....

Take it easy...nice talking to you all...

Luanne Ty's mom

[Guest guest]

Hi Luanne,

Thank you so much for your (and Ty's) notes on experience with cyclosporine. That young man has certainly been through a lot. I send my prayers for your entire family always.

Love,

[Guest guest]

Luanne,

I don't know what to say...as a mom of three little boys, I read your

response and my eyes are filled with tears because of the many nights

of tears and prayers you have probably spent. Thanks for the

encouraging words about cyclo! Just know that my husband and I are

committed to helping with fundraising for AIH and other autoimmune

diseases - your son (and my sons) is just one of the many reasons why

we need more basic research on demographics, causes, and cures - NOT

just studies on drugs to control these diseases.

Betsy

> Sue,Debbie(fla),, Betsy.

>

> Hi..Just wanted to let you know what I know about

cyclosporine....My son

> Tyler who is 18 has been on it for just 3 yrs now...and no he has

not had a

> transplant YET.....In fact he was started on it before he was even

diagnosed

> with liver disease...he was diagnosed with AIH and PSC...about 8

months

> later.....

> He was started on it because no matter what meds they were giving

him...lots

> of them ...he was not doing well....once the cyclosporine was

started we

> started seeing inprovement almost right away...At the time he was

being

> treated for Crohns...diagnosed at 9 and Rhuematoid Arthritis and

> Vasculitis....he was like I said taking many meds...but the

Vasculitis and RA

> were out of control...he had spent the last 7 months of school on

home bound

> because he could not walk...his legs and feet were always

very....and I mean

> very swollen and painful....it would almost always have this

terrible rash on

> legs,arms,feet and face....to the point that his skin was burning

up.....when

> they started the cyclo is got better ....they lowered his dose this

past fall

> but when the rash and swelling started coming back he had to go

back up....He

> has taken 123mg 2x's a day from the beginning...was lowered to 75

2x's a day

> and like I said was put back up with a couple of weeks....

> Ty still takes alot of meds besides his cyclo....one of them being

> pred....which was started back up this past fall after being off of

it for a

> couple of years.....He is on low doses now...and hopefully will be

off

> completely by Christmas.....he is weaned off very slowly....he

takes 10

> different meds at last count....

> He spent almost the entire winter in the hosp...but thankfully is

doing

> better now....and will graduate HS next week....

> He never had any trouble tolerating the cyclo....and I truly feel

it is one

> of the meds that has helped him the most....

> The other thing that has helped him alot is his Remicade

infusions....which

> is for RA and Crohns....he was at his best ...almost 10

months....getting an

> infusion every month....when on the 10 one he went into anaphaxic

shock...so

> they were stopped....with in 3 weeks he started having

problems...and went

> down hill quickly...thus all the hosp time....so they have started

them back

> up...giving the antidote first...The first infusion went

well...they also run

> it very slowly...the second one he went into shock...but they knew

that he

> needed it so they waited abit and ran it even slower....We are

supposed to go

> this mon for another one....but he has a cold...and your can not

get one if

> you are sick...so they have to reschedule....Never a dull moment....

>

> Well I hope I have given you a little insight to cyclo.....It

smells

> terrible...and Ty hates the taste....but he takes it....

>

> Take it easy...nice talking to you all...

>

> Luanne Ty's mom

[Guest guest]

gemma,

are you taking neoral? it is the cyclos. i take. i don't

have inflamed gums, i just have sideburns! i have to use

nair every few weeks, because it makes your facial hair grow

more. i don't know what to help with the gums, unless you

can find an antiseptic mouthwash that might help.

i love neoral, it has gotten rid of my psoriasis and

helps greatly with arth. my dermatologist monitors the med.

i get my bp checked every vist. and blood checked regularly.

it has been a lifesaver for me. don't drink grapefruit juice

when taking, it will affect the absorption and give you

a stomach ache. let me know how it works for you

susan in ohio

[Guest guest]

Hi there

Yes i take the Neoral brand. my psoraisis has never been bad but now

i dont have it at all (unless i use things like bubble bath which

irritate my skin).

shame about the grapefruit juice, i knew not to drink it but i love

it so thats one thing i miss out on.

cheers

Gemma

> gemma,

> are you taking neoral? it is the cyclos. i take. i don't

> have inflamed gums, i just have sideburns! i have to use

> nair every few weeks, because it makes your facial hair grow

> more. i don't know what to help with the gums, unless you

> can find an antiseptic mouthwash that might help.

> i love neoral, it has gotten rid of my psoriasis and

> helps greatly with arth. my dermatologist monitors the med.

> i get my bp checked every vist. and blood checked regularly.

> it has been a lifesaver for me. don't drink grapefruit juice

> when taking, it will affect the absorption and give you

> a stomach ache. let me know how it works for you

> susan in ohio

[Guest guest]

hi,

i have been on neoral, a cyclo. for almost 2 years. my dermie

has me on it for the psoriasis. it has gotten rid of 90% of it.

still have scalp and calf patches. also helps arth. i only take

once a day, if i take 2x's it is better for arth, but don't like to

take more than have to. it is expensive med. but haven't had any

problem with liver enzymes like with mtx. keeps my nails " normal " too.

susan in ohio

[

[Guest guest]

,

May I ask how long it took for you to see improvement in P and PA on the

cyclosporine?

Cheryl

[ ] re:cyclosporine

> i would like to second the opinion on cyclosporine. have been taking

> for almost 2 years. it has gotten rid of almost all psoriasis and

> helps greatly with arthritis. my insurance covers it, because it is

> expensive. i get mine through dermie. it has given me my life back.

> susan in ohio

[Guest guest]

my dermie told me it might take months before i noticed any

relief in the psoriasis because it was so bad. i have the

plaques that are itchy and flaky. well, within a couple of

days my arms starting clearing up! what was going to clear

up, cleared up within a week. i still have ps in my scalp,

i don't do anything about it. my hair is a little past

shoulder length, and it just itches a little, too many

other things to worry about. also, have some on calves

which i don't worry about either. dovonex does help. if

i take the med 2x daily, my nails stay normal. 1x daily

they detach a little.

re; arthritis, i was not doing too badly when i started,

i just happened to notice i didn't have to take as much

aleve as before. now, with my fingers getting sausagy,

i probaby need to get into dr and get on a nsaid of

some kind because it isn't going away on its own.

what ps has cleared stays pretty clear, during stressful

times it will come back. if it gets bad and doesn't clear

up after a week or so, i will increase dosage. my dermie

does blood tests regularly and limits my refills, and trusts

me to know when i need to increase, or call him. he actually knows

more about pa than any rheumy i've been too.

hope this was helpful

susan in ohio

[Guest guest]

hi,

i have been taking cyclosporine for 2 years now for psoriasis.

i had 90% coverage and nothing worked. at that time, arthritis was

controllable by aleve. it works great,i take 100 mg a day, now, at

first 2x. i have tried every other day, but ps comes back, and arth.

starts flaring. i still have stubborn ps on calves and head, but i

hate ointments and such, so i can't say i can't get it to go away,

just don't try. i do have blood test done, for me, about 2x a year

now. blood pressure has always been low, and other test stay normal.

i haven't tried any of these new meds, enbrel, etc. so i can't

compare. i can just say it has done wonders for me.

good luck.

susan in ohio

[Guest guest]

hi mike,

i have been on cyclo. for almost 2 years i think, maybe 3. time

goes too fast. i love it. when i started i had tried nearly

everything, but my psoriasis was just too stubborn. within, literally

a day of starting, which was 2 100 mg. pills, i could see thinning of

the patches. within a week almost all was gone. the only patches i

have left are my calves, which this month are finally starting to

clear. why it's taken so long for them, who knows?

i have my blood pressure checked at every checkup, which is about

every 2 or 3 months, and have blood work done 2x a year now. i have

never had any problems with it. the only side effects i have seen,

greater sensitivity to hot water when i am cold- when i get in shower

my feet tingle for a second. my hair grow faster,and thicker. good

for head, not for arms. it is very important that you don't drink

or eat grapefruit when taking it, i guess it will upset your stomach.

o.j. is ok for me. i do better on an empty stomach, eating after

taking makes me nauseus(sp). i take one pill in the morning now, if

having a flare up, i take one at night. most of time i only take one.

if i don't take it, the ps comes back within days! it also helps with

arthritis. the more cyclo. i take the less i feel arth.

i hope this helps, it is been my " miracle " treatment, and yes it has

its effects, but what meds don't! you just have to be vigilant about

your bloodwork and blood pressure. i don't know if it affects

fertility, this is not an issue for me. i am done having kids, and

have had hyster.so i don't worry about that anymore.

good luck, and if you have any other questions feel free to email me.

susan in ohio

[Guest guest]

In a message dated 7/27/2003 6:01:58 PM Eastern Daylight Time,

nut_tree58@... writes:

> but I am feeling much better now that I am on the Cyclosporine... I hope it

> will help some of you as well.

>

Hi ,

It's nice that you are feeling so much better. Are there any side effects

that you are experiencing from the cyclosporine? Or can anyone else let me know

if they are having any side effects from it.

Janet