Re: stents, alternative meds,etc...'--cynthia.

[Guest guest]

HI CYNTHIA, MY EARS WERE SWOLLEN SHUT AND I HAD MEATOPLASTY SURGERY ON BOTH

EARS, THE SURGEON DISCOURAGE SURGERY ON MY NOSE BECAUSE OF A POSSIBLE

REJECTION..... ISA

>

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: stents, alternative meds,etc....

>Date: Sun, 5 Aug 2001 19:58:27 -0700 (PDT)

>

>Hi everyone, I've just heard about this group

>through Woods. I hope you can help me. And

>forgive me, since this email message is long.

>

>I'm 36 years old and I live in the Bay Area, CA.

>I've been diagnosed with RP for a year now. I've

>been on varying doses of Prednisone for the large

>part, ranging from 17.5 to 30mgs. Just 2 months

>ago, I started to taper down Prednisone (down

>from 80mgs, my dr thought I was having hearing

>problems so she put me on high doses, but I think

>it was my switching to Dapsone--body reacted to

>it with ringing in the ears). I was on Dapsone

>for 1.5 days. Now I'm on methotrexate and looking

>forward to the day I get off Prednisone

>altogether.

>

>RP was localized in the ear area until 2 months

>ago when it went crazy and spread to my trachea

>and chest walls. The pain in my chest is pretty

>much gone. Coughing and hoarseness was my main

>problem until 2 wks ago when breathing became

>difficult and came with more regularity. It's

>affected my activities and it's leaving me

>feeling pretty helpless. Walking across the

>parking lot to the train station leaves me

>breathless. I haven't been to the gym in two

>weeks (I used to go everyday just to counter the

>Prednisone effects). I've signed up for a

>handicapped placard. My puffy appearance

>depresses me.

>

>Last week Thursday I showed up at the doctor's

>with shortness of breath (my worst episode yet)

>and so my doctor is having a pulmonologist (?)

>look me over this coming Thursday and there is a

>strong possibility of getting a stent to keep my

>trachea open. Before I do anything, I want to

>know the pros and cons to putting in stent. The

>information I got from the Internet gives me the

>pros but I really want to hear from the patient's

>point of view.

>

>Putting in a stent scares me alot even though it

>sounds like a great idea.

>

>The questions I would like to pose to the group:

>1) if you've had a stent put in, what do you

>like/not like about it?

>2) Have any of you become pregnant or are trying

>to get pregnant. How (un)successful have you

>been? What meds were you on?

>3) Have you tried alternative meds that have

>worked for you?

>4) Has any one of you gotten plastic surgery to

>correct the saddle nose? How was it done and did

>it help?

>

>I'm trying accupuncture to help ease the symptoms

>of RP as well as some other health issues that I

>have that are separate from RP. I go once a month

>and haven't noticed much of anything. Am I being

>too impatient or am I going down the wrong path?

>

>Now that I'm on methotrexate, I know that I

>shouldn't try to get pregnant. I know when I'm

>off meth. I have to get back on Pred. because

>it's the safest drug for carrying a fetus. It

>just feels like a never ending cycle...

>

>I have a lot of questions here. I hope some of

>you can answer them and forgive me if I've dumped

>a load off of you at one time. It's the first

>time I've talked about RP to anyone outside my

>husband, family and doctors and their answers are

>pretty limited to " I don't know " since this

>disease is largely " uncommon " or " rare. " I would

>appreciate any help or perspective you can give

>me.

>

>Regards,

> Bocoboc

>

>

>

>

>=====

>

>When choosing the lesser of two evils,

>I always like the one I haven't tried.

> -- Mae West

>

>

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