kathi

September 9, 2001

In a message dated 9/7/01 11:18:48 AM Pacific Daylight Time,

angelhearts61@... writes:

<< just started the Methotrexate in June, when I was diagnosed.

I am certain that we just haven't hit on the right combination of

medications for me yet. >>

Kathi, I think all of our expectations are always high.... I was told the the

metho takes a good 3 months to start working... I took it for a year and was

never able to decrease my pred, so it just didn't work for me... Don't give

up yet... Ask your dr and see what he thinks... I waited too long to change

to something else...I kept having to raise my pred and it made it worse for

me in the long run...

Give the metho a good try, but if you feel it isn't doing the job, talk to

your dr and see if another drug might work better for you... Remember, it

is your body and you are in charge of your health...

Hope you feel better soon.. My thoughts and prayerss are with you.

hugs

September 17, 2001

Kathi, don't feel bad, I am not the most computer illiterate either. LOL

Still learning from my mistakes. Here is a copy of the post that Lu sent..

It has my address for the foundation... I want to take this time to thank you

and all the others who have shown interest in Dr. Bucknes Research and the

Foundation... This is may be our only hope to find a CURE for this terrible

disease... thank you from the bottom of my heart.

Hope you are doing well Kathi... Glad to have you back.... You can go to the

group site and read some of the old posts if you want... LOL I'm sure it

will keep you busy.

hugs

Hi Everyone,

Dr. Buckner wrote me a letter today. If you want to participate in her

research. Send me a private e-mail with your name address and phone number. I

am compiling a list for her from our group.

She was very excited in her letter. She told me she had been able to reach a

much larger group of RP patients via letters and e-mail.

The enthusiasm that these individuals have demonstrated has made this a very

exciting time for her, also the increase has allowed her to expand her RP

research program.

I'm sure she will send you all this same letter after she gets the names of

individuals who want to participate. Okay group we need an overwhelming

response. Also if you have done it before and want to do it again, send me

your name.

I just can't express her enthusiasm in the letter. She feels that now she

will soon be able to identify factors that may contribute to disease severity

and predict response to therapy.

She wants me to let you know the identity of each patient is kept

confidential.

The information gathered in all areas will be published in scientific

journals as they make new discoveries. This fall she will be presenting some

of her findings on RP at the meeting of American College of Rheumatology.

She plans to expand the work over the next several years. The Virginia Mason

Research Clinic has moved into new laboratories over the summer allowing her

to physically expand her work, and she has been able to expand the scope of

her work through financial support of donations and a grant from the

arthritis foundation.

She plans to remain in contact with all of the people who donate blood and

who have already participated in this work. She also sent me a list of the

research work she has outlined to do.

In the next several weeks they will provide the information about this work

on their website at www.vmresearch.org.

But if anyone wants to know anything further just e-mail me.

Please folks send me your name, address, phone number and e-mail address.

Please send it to Lu1953@...

We want to have a large group that will be willing to contribute their blood

as an RP patient for research. This will not cost you at all. The donations

she has received covers the cost.

But we as a foundation want to contribute to her research, we need donations

to do this. These are tax deductible, please look deep into your hearts, so

we can send Dr. Buckner funds also. She is really going somewhere now with

her research. We need to be in on it.

But even more importantly, if you have not joined the Relapsing

Polychondritis Support & Awareness Foundation, please do so now. WE need your

help. The money we raise will help further research, it will help print

brochures for education. Please try to find a way to send in your 15.00

yearly contribution or a larger amount will be greatly appreciated.

We are all a team working for the same cause. Please be on this team with us!

We cannot do it alone. We have to get our fundraising programs in action,

there is so much work to do. Please try to dedicate something of yourself to

help. To mail donations send them to the

RP Foundation

C/O Colloran

775 Bounty Place

Manteca, CA 95337

To volunteer doing other things please send in what you can help do to

Barbara Angerhofer her e-mail addy is angerhob@...

Remember we are all volunteers, we are here for you. We all want

answers,remissions, and a wonderful life. But we need all of your help.If any

of you have any questions please e-mail me and I will try to get the answer

for you. Or if you have any questions you would like for me to send to Dr.

Buckner with the list of names, please send them to LU1953@....

Thanks!

Love to you all!

Lu

September 17, 2001