My RP Story

December 18, 2001

Hi All ...

Just checking in and want to wish everyone a joyous and happy holiday season!

Additionally, I want to wish belated birthdays to all and my sorrow to those

family members whose loved ones have lost their battle with this disease.

I know a lot of you have been writing your RP stories at the request of Heidi

and I had kept mine saved, so I thought I would share it again and of course do

a little " update " for you ....... You have to remember that I am one of the

lucky ones. Here you go ...

I had kidney surgery in September of 1996 which I believe now triggered my RP.

The reports I have read about the disease claim that a trauma to one of the

organs, such as a major surgery, can cause an onset or a flare.

One year later in October of 1997, I woke up one morning with a very sore ear,

but thought nothing of it. The next day it felt like it was going to blow off

my head! It was swollen, purple and looked like it was going to pop if I even

got near it. I immediately phoned my primary physician and went to see him

that day. My PCP is a renal specialist and therefore, was not up to speed on

his info on what this condition might be. He consulted with his brother who is

also a MD and together with the symptoms I presented, diagnosed this as

Relapsing Polychondritis. They treated it with the 6 day medrol pack or

prednesone treatment and it went away. I could never remember the clinical name

for the disease and shrugged it off, thinking it was no big deal and always

referred to it as my " Mrs. Potato Head disease. "

Six months later and about every six months thereafter, I would have a flare and

treat it again with the 5-6 day blast of prednisone. In December of 1999, the

flares started to occur every 2 weeks and I was at the same time having bouts of

eyeritis (sp?) My opthamologists prescribed a prednisone drop and between the

two, the flares subsided.

It was at this point that I decided to do a little research on the internet.

Hence I stumbled across Dr. Trentham's report and found the RP Support Group.

One of the best days of my life (or so to speak). After reading the report, I

truly thought I was going to die and would never see my youngest son graduate

High School, get married and help take care of his babies (along with my two

older sons). I sent copies of the report to my mother, who has been an RN for

45+ years and my brother who works for the pharmaceutical company, Amgen, who is

well versed on drugs and treatments of disease. This sent the family into a

panic and my mother was hysterical telling me that I wasn't going to die before

she did. She wouldn't allow it! After discussions with the family and my

husband, I figured " what the heck, " I'll give a copy of the article to my PCP

and discuss it at length with him.

I must say, I am fortunate once again to have a PCP or any type of doctor that

actually spends time with a patient and LISTENS to them. I faxed Dr. T's

report to him and he called me right away after reading it. He had absolutely

no idea that there was so much to this disease because of the statistics and it

being a rare disease. Because I only live 3 hours from Boston, MA, where Dr.

Trentham practices medicine, I asked my PCP for a referral in order to get a

true diagnosis. He agreed and I called Dr. Trentham to make an appointment.

Dr. T called me himself that same afternoon to discuss my symptoms and current

treatment. He ordered special blood work that I had never heard of before (the

CRP - c-reactive protein and the SED rate), both which measure the amount of

inflammation in the body and the cartilage.

On March 2nd of 2000, I had my first appointment with Dr. T. Unfortunately I

had just finished a medrose pack and the flare was at an end. Dr. T doesn't

like the use of prednesone to treat the disease, if he can get away with it.

After reviewing my medical history (and I previously sent him every record I

could get my hands on .... primary doctors file, the opthamologist, the doctors

file who treated my kidneys and even my OBGYN) and an examination, Dr. T

confirmed the diagnosis made by my primary care physician and came up with his

course of treatment after calculating height/weight, etc.

He put me on treatments of Methotrexate right away and I started with only 4

tablets/ 1 time a week. This wasn't a large dose, but it was a place to start

to see where the flares would go and we would adjust the dose if we need to.

You have to keep in mind that I don't have any of the other related types of

diseases like lupus, or some of the other ones a lot of the members of the RP

Support Group have. I take synthroid on a daily basis and have for years due to

an under-active thyroid. Thyroid problems run in my family and my sister is a

cancer survivor from thyroid cancer she had when she was 12 (I'm digressing here

a little). My father also takes thyroid replacement. Anyway, I was to continue

the methotrexate and have my blood work done every 8 weeks to monitor my

progress.

I really suffered minor or little side effects from the methotrexate. Some

nausea in the beginning and my PCP prescribed a drug which helped a lot until my

body adjusted to the Metho. Every 16 weeks I returned to Dr. T's office and he

began to slowly reduce my methotrexate (2.5 mgs per trip). I continued to be

flare free and if I felt a little soreness coming on in one of my ears, I would

take 1650 mgs/day of Anaprox. This helped and I have to say, I only took it a

few times. Anaprox is my wonder drug ... I use it on a monthly basis for female

related issues.

During the treatment process, I was determined that I wasn't going to let this

disease or anything else keep me down or depressed or stop me from doing all the

things I enjoy in life. Those things include camping with my husband, son and

dog, quilting, sessions at the gym 3-4 days a week, walking 5 miles after work

with a friend 2-3 times a week and just being as normal as possible. On

treatment days, I didn't do much, but as the dose was reduced, I resumed normal

activities even on these days. I had also had a baseline hearing test done,

eyes checked regularly, etc., which is some of the recommendations that were

given through the RP Group members to keep on top of.

Guess what ..... In October of 2000, I took my last methotrexate tablet. In 3

more months, in March of 2002, I will be flare free for two years!

Watching my weight, eating healthy and keeping my butt in the gym, I have licked

this disease, even if it's for a while. I take every flare free day I can have

and thank the Lord for it. I have a wonderful support group starting with my

husband, sons and family; as well as with all of my friends here in NY and those

I left behind in CA when I moved to NY in 1996. I certainly can't leave out all

of my RP buddies either, who we all have been blessed with. I accomplished

this by keeping a good attitude and by remaining positive, truly believed I

would lick this beast. Doctor T couldn't give me any strong evidence as to

how long I would be in remission. He said it could be 6 weeks, 6 months, 6

years or I can remain flare free forever! We just don't know.

I strongly encourage everyone to listen to their bodies and to take daily

supplements to help keep their bodies strong and their blood pumping through

exercise, if possible. Isometric exercise can help keep the muscles strong, if

you are not able to get to a gym .... If there's a will .... there IS a way!

Those of us who have young or small children should understand that we can live

a long and healthy live, if we do what is best for our bodies and we will be

there to watch our children grow up and grow old with our spouses.

Think positive .... be strong and attack this with an open mind. If I can only

get my body to stay up with my mind and quit hurting myself at the gym or in my

yard, I'll be a happy woman! Remember, I'm a 44 year old woman who thinks her

body is still 24 and I'm forcing my body to stay up with my mind. I continue to

work full time, teach quilting classes in the evenings and have started tutoring

students from FIT (Fashion Institute)in New York City on the weekends.

Good luck and remember, remission does happen!

December 18, 2001