Neoral

[Guest guest]

,

I have taken Neoral and I think its wonderful stuff. I took it in

combination with MTX and it pretty much made the P go away

completely, even in my nails! It takes a few months but it works.

Some of the side effects you have to watch, like Neoral will elevate

your blood pressure, so you will have to monitor it very closly for

at least 3 months. My Rheumy advised me to go buy my own blood

pressure cuff to check it everyday. Mine didn't go up so high that I

had to stop it, but it did go up. The other strange side effect that

I had was tingly hands and (especially) feet when I would take a hot

shower or bath. After a few minutes in the hot water this would

subside, but it happened every time. I guess this is common and

nothing to worry about, but if it happens to you let your Dr know.

My Rheumy started me on 100mg 3 times per day but I backed myself

down to 100mg 2 times per day and that held me fine, so be sure that

he doesn't give you too much, especially if you heavy, they tend to

overperscribe. I also took both pills at night before I went to bed

because I just couldn't bring myself to swallow those nasty things

more than once a day, ew are they yucky! My husband and I called

them my stinky pills. I had to build myself up everyday to take them

because they were so yucky. Also, don't EVER take them with any kind

of citris juice, like OJ or Grapefruit, (the insert talks only about

Grapefruit, but I learned the hard way with OJ). I'm not exactly

sure what happens when you do, I only know that I got the worst heart

burn and stomachache when I did, I thought I was gonna die. So my

advice is to stay away from it. You can drink it when its an hour or

so after, but be careful, I would hate to see you suffer like I did.

Thats all I can think of for now, but if you have any other specific

questions, feel free to ask away and I will be happy to help.

Tempe, AZ

> happy new year!

> i am one of the left and right pinkie people. my right one

> is still bendable. i haven't written in a while because

> nothing major has been going on here. my psoriasis is

> still out of control, so much so, that i finally gave in and

> went to the dermie yesterday. it gotten to where i felt

> like i was going to jump out of my skin. i would scratch

> til i bled and it felt raw. i have it from scalp to ankles and

> have never been able to get it under control. the dr

> decided to finally try a cyclosporine. he was going to put

> me back on mtx but it damaged my liver last time.

> i had to get blood drawn first and i will have to be monitored

> while taking the neoral. it is suppose to be a last resort med

> for p sufferers and arth. too. it is also suppose to work quickly.

> have any of you taken it, and if so how did it work, and

> side effects. i would appreciate any feedback. i haven't

> taken any meds in 2 years, but i had to do something.

> i hope this works, w/out the side effects i got with soriatane.

> well, that's all from here. have a great weekend.

> susan in ohio

[Guest guest]

Hi -

I've taken Neoral twice (once for five years between 95-2000) and now I'm back on it again because I'm going through a bad flare. The Neoral has worked great for my skin, but unfortunately it hasn't kicked in for the arthrirts. It took about two weeks to see some skin clearing. Good luck!

Sara -Los Angeles

-----Original Message-----From: Ralph l. McGillvary [mailto:jca@...]Sent: Friday, January 05, 2001 6:05 AM egroupsSubject: [ ] neoral

happy new year!

i am one of the left and right pinkie people. my right one

is still bendable. i haven't written in a while because

nothing major has been going on here. my psoriasis is

still out of control, so much so, that i finally gave in and

went to the dermie yesterday. it gotten to where i felt

like i was going to jump out of my skin. i would scratch

til i bled and it felt raw. i have it from scalp to ankles and

have never been able to get it under control. the dr

decided to finally try a cyclosporine. he was going to put

me back on mtx but it damaged my liver last time.

i had to get blood drawn first and i will have to be monitored

while taking the neoral. it is suppose to be a last resort med

for p sufferers and arth. too. it is also suppose to work quickly.

have any of you taken it, and if so how did it work, and

side effects. i would appreciate any feedback. i haven't

taken any meds in 2 years, but i had to do something.

i hope this works, w/out the side effects i got with soriatane.

well, that's all from here. have a great weekend.

susan in ohio

[Guest guest]

Dear Luanne - Ty's mom

Thanks for your welcome. I'm sorry to hear about your son's

autoimmune diseases. May God Bless you both. I started taking Neoral

when I started developing problems with my high dose of prednisone &

my blood tests (LFT's) continued to rise. Dr. Palmer referred me to

Dr.Tepperman @NYUMC. He's the head transplant surgeon there. He

started me on Neoral 25mg2x/day. I'm pre-transplant but I don't have

enough points to be on the waiting list but he oversees my case. Dr.

Palmer & he feel I have so many autoimmune diseases that I'm a tough

case. Where do you live? What meds is your son taking? Why is your

son taking Neoral for the PSC? They were concerned that I was going

to develop that also. Please write back to me - concerned - Lamice -

NY

[Guest guest]

I was wondering if anyone is taking Neoral. My rheumatologist has me on

methotrexate, plaquenil and has just added Neoral which is a form of

cyclosporine. He said this is the trio they prescribe before moving onto

Remicade or Enbril (sp?) injections. The idea is that small amounts of

different powerful drugs instead of large amounts of one drug, act in concert

to put the disease into remission. Has anyone had any experience with this?

Any luck with this?

I really hate adding more drugs into the mix. My personal philosophy has

always been to handle things naturally. My hope is that after going into

remission, I can switch over to natural supplements and control the disease

through diet. Anyone read the New Arthritis Relief Diet by Scala?

I have confidence that my RA will go into remission. I suffered from severe

ulcerative colitis which now has been in complete remission for 4 years. I

think combining the best of Western medicine with natural healing and diet,

not to mention a good attitude, has helped me in the past and I hope will

help me with this disease, too.

I know there are a lot of people in a lot of pain and it is good to be able

to use a board like this to express oneself. I would love to hear from those

of you who have had success with their disease and hear your experiences of

how you were able to beat or control your RA. I think we could all use some

positive and hopeful stories.

gloria