stents, alternative meds,etc....

[Guest guest]

, Hi and welcome to the group... We just might be neighbors. Where in

the Bay Area do you live? I live in Manteca. Lived 9 years in San Leandro.

So sorry that you need us, but so glad that you found us... This is a

wonderful group and they will have lots of answers for you. I don't have

any answers for your questions, haven't had to deal with stents, but many

have...

My Rp only involved my ears at first... I have had some of the same symptoms

that you are having with the shortness of breathe and breathing. I had some

problems swallowing too. Please do get the handicap card and use it... It

will really help those long treaks to and from the car...

I am just getting started with an acupuncuturist. Guess we will try just

about anything huh? lol Hey if it works..... why not give it a try... I am

only on pred at the moment and trying to decrease... Am down to 10mg from

80mg... So far so good... A slow process, but well worth it.. I only lower

mine 1mg every 3-4 weeks. Have also added Biaxin and have not had a flare in

over 2 months.

Please feel free to ask all the questions you want... Someone will head you

in the right direction... Never hesitate to ask or vent or cry or laugh......

we are here for everything..

hugs

[Guest guest]

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

__________________________________________________

[Guest guest]

,

Wow!!! So glad that you found the group! Sorry to hear that you have RP! Sounds like you are really having a time of it! I don't know anything about the stent stuff so no help there. Never worry about the length or what you post. This group is the greatest we are here for each other through the good and the bad.

My name is Glenda and I live in Oregon in the Willamette Valley. I am 44 yrs old and I have had RP for 8yrs. I am on 100mg. of azathioprine daily. I only take the pred. when I have a major flare. I am one of the luckier RP people mine so far has been mild and has only affected the ears, nose, and exterior cartilage areas.

Hope to get to know you better. Keep posting and I am sure you will get some answers! Welcome to the group!

Lots of Love

Glenda

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.265 / Virus Database: 137 - Release Date: 7/18/2001

[Guest guest]

Hi :-)

I bet you've figured out by now that there are a lot of great people in this group :-) I know you'll find lots of support and quickly make new friends.

You asked about any possible alternative meds for RP. Many people with rheumatoid arthritis (RA) have found their disease wonderfully responds to the antibiotic treatment (called AP by its supporters....but this isn't an official medical term :-) Since RP is in the RA family, there are doctors who are willing to use or try the AP for polychondritis, as well. Dr. Trentham, in his article listed on the RP website http://rpolychondritis.tripod.com/index.html mentions that the antibiotic Minocin is effective. Basically, the AP involves using long-term, low-doses of tetracycline based antibiotics, like Minocin or doxycycline. In addition, for severe or long-standing disease (and I would think that RP qualifies as severe!) other antibiotics are found to be helpful....either IV's of Clindamycin or oral tablets of Biaxin or Zithromax.

The whole antibiotic treatment used to be regarded as a far-out alternative treatment but the many thousands of happy people who have benefited from it have generated the attention of more and more doctors who are willing to learn about it. Dr. Trentham is also known in the groups who actively promote the AP for many other rheumatic diseases and you can find out the details of this treatment at www.rheumatic.org and www.roadback.org

Since you are in CA you are close to one of the country's, if not world's, most wonderful doctor using the AP to treat the various rheumatic diseases, including RA, scleroderma, reactive arthritis, dermatomyosits, sjogren's, fibromyalgia, etc......his name is Dr. Al Franco and his partner is Dr. Lallande. Their website is www.thearthritiscenter.com I am lucky to be able to travel to CA once each year to see Dr. Franco and I've made wonderful progress on the AP. You can read my story at http://www.rheumatic.org/connie.htm

There's a lot of reading involved in this treatment, but the more you read, the more you'll know :-) Oh yes, one more website...... Dr. Garth Nicolson has done a lot of research on the infectious cause to various illnesses, including the rheumatic diseases, ALS and even cancer. You can read his website at www.immed.org Lastly, do try to get a hold of Henry Scammell's books, The New Arthritis Breakthrough and his other one called Scleroderma, The Proven Therapy That Can Save Your Life......both are highly recommended. You might even be able to find them at your library or ask them to order the books for you.

Good luck, :-) Please ask any questions that come to mind.

Connie H.

From: Bocoboc <hiacynth1@y...>Date: Sun Aug 5, 2001 7:58 pmSubject: stents, alternative meds,etc....

Hi everyone, I've just heard about this group

through Woods. .........3) Have you tried alternative meds that have

worked for you?.......

Regards,

Bocoboc

[Guest guest]

In a message dated 8/6/01 2:54:01 PM Pacific Daylight Time,

hiacynth1@... writes:

<<

What about Glocusamine Chondroitin? Does anyone know if it's supposed

to help RP? After all, it's supposed to help the body replenish the

cartilage...

>>

... You DONT want to try this.. I did and all my drs. yelled at me.

LOL What it does is it makes more cartilage for our body to attack... We

don't want that.. We don't want anything that can boost the immune system

either... Just thought I'd let you know what I found out before they yell at

you. LOL

hugs

[Guest guest]

Hi ,

I am so sorry about the rp, but like you I just found the group, and I

can't tell you how much better it makes you feel to be able to talk to

people who are experiencing what you are. I was diagnosed about 6

months ago, although my husband's doctor (one of his best friends)

guessed about 1 1/2 yrs ago.

I am 30 yrs old, with 4 cats, 2 dogs and a hubby. I have had symptoms

since I was 13, so for me this was a long time coming. Initially I had

flares every two years, but now I seem to be in a constant flare. My

rp first started in my nose, then eyes, then ears. If you get any

inflammation in your eye, please go straight to the doctor, when I had

my first episode, they didn't know what was happening and I lost some

sight in my eye. My current Rheumy is not very informed and I am not

on any medication right now.. I am currently rectifying this doctor

issue. LOL

You asked about alternative medications, and my husband's doctor was

recommending to me this weekend that I try Shark Cartiledge and

Flaxseed. Apparently Flaxseed is an anti-inflammatory, and with the

Shark Cartiledge, there has been some research that when you slowly

introduce collegen to the body, over time instead of our body

attacking it, it will grow to accept it. I am in the process of trying

to locate some and will begin trying this soon, so I will let you know

how it goes.

I also have the breathing difficulty, and this is so disgusting, but

have alot of mucus in my throat, and am always coughing. I go hoarse

and loose my voice about twice a year, but until I came to the group I

had no idea it was related.

My email is jasidan@..., if you ever need to vent please feel

free to email me, and this is for everyone in the group. Even though

I have only been here a short time, just being able to talk to someone

else who understands what I am going through has helped me so much.

My mood has gone from one of feeling sooo alone, to one of thinking I

can do this. It is amazing how much a little support can go a very

long way.

le

[Guest guest]

Thanks for the welcome. Already I feel pretty good about joining this

group.

Based on your symptoms, I'm really amazed you're not on any kind of

medicine to help your inflammation.

My dr has told me if I ever feel anything funny in my eyes or my ears

(loss of hearing, ringing) to take 80 mgs of Prednisone and call here

immediately. She had a patient who came to her long after her

prognosis of RP and had some trouble hearing and eventually lost her

it.

I didn't know about shark cartilage. I use flaxseed daily. The seed

is much easier on the palate than the oil. It's good for Omega-3 and

just a heaping teaspoon (or tablespoon?) will take care of your daily

recommended allowance (better than tryng to eat fish every day). I

buy the flaxseed whole and grind it up by the week and sprinkle it

over my cereal in the AM. They say to grind it fresh or use it within

a week. Omega-3 has been found to help people with arthritis. I don't

have it RA, so I'm doing this just to help out.

What about Glocusamine Chondroitin? Does anyone know if it's supposed

to help RP? After all, it's supposed to help the body replenish the

cartilage...

As for my voice, it's not normal anymore. It's really hoarse,

monotone and unrecognizable. I think it sounds like " old scary lady

with a nicotine problem " but some people (humoring me?) have told me

I sound like Demme or one of those older actresses. I can't

sing like I used to (not that I had a great voice) :-(

> Hi ,

>

> I am so sorry about the rp, but like you I just found the group,

and I

> can't tell you how much better it makes you feel to be able to talk

to

> people who are experiencing what you are. I was diagnosed about 6

> months ago, although my husband's doctor (one of his best friends)

> guessed about 1 1/2 yrs ago.

>

> I am 30 yrs old, with 4 cats, 2 dogs and a hubby. I have had

symptoms

> since I was 13, so for me this was a long time coming. Initially I

had

> flares every two years, but now I seem to be in a constant flare.

My

> rp first started in my nose, then eyes, then ears. If you get any

> inflammation in your eye, please go straight to the doctor, when I

had

> my first episode, they didn't know what was happening and I lost

some

> sight in my eye. My current Rheumy is not very informed and I am

not

> on any medication right now.. I am currently rectifying this doctor

> issue. LOL

>

> You asked about alternative medications, and my husband's doctor

was

> recommending to me this weekend that I try Shark Cartiledge and

> Flaxseed. Apparently Flaxseed is an anti-inflammatory, and with

the

> Shark Cartiledge, there has been some research that when you slowly

> introduce collegen to the body, over time instead of our body

> attacking it, it will grow to accept it. I am in the process of

trying

> to locate some and will begin trying this soon, so I will let you

know

> how it goes.

>

> I also have the breathing difficulty, and this is so disgusting,

but

> have alot of mucus in my throat, and am always coughing. I go

hoarse

> and loose my voice about twice a year, but until I came to the

group I

> had no idea it was related.

>

> My email is jasidan@y..., if you ever need to vent please feel

> free to email me, and this is for everyone in the group. Even

though

> I have only been here a short time, just being able to talk to

someone

> else who understands what I am going through has helped me so

much.

> My mood has gone from one of feeling sooo alone, to one of thinking

I

> can do this. It is amazing how much a little support can go a very

> long way.

>

> le

[Guest guest]

le,

Your email brought tears to my eyes. The paragraph you wrote is so true. I think that is how I felt about a year ago when I found this group! I sure don't know how I got by so long with out them!

Take care and so glad you found us you already made my day!

Lots of love

Glenda

My email is jasidan@..., if you ever need to vent please feel free to email me, and this is for everyone in the group. Even though I have only been here a short time, just being able to talk to someone else who understands what I am going through has helped me so much. My mood has gone from one of feeling sooo alone, to one of thinking I can do this. It is amazing how much a little support can go a very long way.le DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

I actually tried the Glocusamine Chondroitin combination, but the

reason I stopped taking it was I kept getting nose bleeds, they type

that wouldn't stop for ages. At first I thought it was just me, but

my husband tried it, and it happened to him as well. I am not good

with blood!! I am the dingbat at the blood center who faints!!, so I

stopped taking it.

The voice thing is a pain, I worked in the hotel before moving here,

and I would be dealing with an irate guest, and my voice would just

go, and I couldn't speak. I got out of alot of situations that way! My

best friend (a guy) just loves when my voice acts up, as he thinks

it's hysterical the reaction I get. He says the hoarse thing is very

sexy! I should mention just because he is my best friend, doesn't mean

he isn't a tad weird!!

I just moved from Bermuda (my native country) to Albuquerque about 1

1/2 yrs ago. And was dealing with the health care system here, so it

took me ages to find out what was wrong, and the doctor keeps telling

me I am " mild " , and I was having an ear flare at the time!! So.. he

says no medication until I get a real flare. I mentioned this in

another post, and I can't tell you how many people wrote me and said

go to another doctor now. I am currently in the process of finding

another doc, but my husband's PCP is really into homeopathic options,

and he is trying to research and find out about rp, so anything I

learn I will post.

I hope talking to everyone here is going to help you in some way, even

if it just puts a little spring in your step

le

[Guest guest]

Hi ,

Welcome to the RP list.

I also use Flaxseed, but I take it in oil form.

I would not recommend Glucosamine Chondroitin , You don't want to promote growth of cartilage or boost your immune system.

My voice is totaly different now,also. I cannot sing anymore, well actually, I try because I love to sing but now I sound kind of croaky. LOL

Hugs,

Sandy

----- Original Message ----- Thanks for the welcome. Already I feel pretty good about joining this group.Based on your symptoms, I'm really amazed you're not on any kind of medicine to help your inflammation.My dr has told me if I ever feel anything funny in my eyes or my ears (loss of hearing, ringing) to take 80 mgs of Prednisone and call here immediately. She had a patient who came to her long after her prognosis of RP and had some trouble hearing and eventually lost her it.I didn't know about shark cartilage. I use flaxseed daily. The seed is much easier on the palate than the oil. It's good for Omega-3 and just a heaping teaspoon (or tablespoon?) will take care of your daily recommended allowance (better than tryng to eat fish every day). I buy the flaxseed whole and grind it up by the week and sprinkle it over my cereal in the AM. They say to grind it fresh or use it within a week. Omega-3 has been found to help people with arthritis. I don't have it RA, so I'm doing this just to help out.What about Glocusamine Chondroitin? Does anyone know if it's supposed to help RP? After all, it's supposed to help the body replenish the cartilage...As for my voice, it's not normal anymore. It's really hoarse, monotone and unrecognizable. I think it sounds like "old scary lady with a nicotine problem" but some people (humoring me?) have told me I sound like Demme or one of those older actresses. I can't sing like I used to (not that I had a great voice) :-(> Hi ,> > I am so sorry about the rp, but like you I just found the group, and I > can't tell you how much better it makes you feel to be able to talk to > people who are experiencing what you are. I was diagnosed about 6 > months ago, although my husband's doctor (one of his best friends) > guessed about 1 1/2 yrs ago.> > I am 30 yrs old, with 4 cats, 2 dogs and a hubby. I have had symptoms > since I was 13, so for me this was a long time coming. Initially I had > flares every two years, but now I seem to be in a constant flare. My > rp first started in my nose, then eyes, then ears. If you get any > inflammation in your eye, please go straight to the doctor, when I had > my first episode, they didn't know what was happening and I lost some > sight in my eye. My current Rheumy is not very informed and I am not > on any medication right now.. I am currently rectifying this doctor > issue. LOL> > You asked about alternative medications, and my husband's doctor was > recommending to me this weekend that I try Shark Cartiledge and > Flaxseed. Apparently Flaxseed is an anti-inflammatory, and with the > Shark Cartiledge, there has been some research that when you slowly > introduce collegen to the body, over time instead of our body > attacking it, it will grow to accept it. I am in the process of trying > to locate some and will begin trying this soon, so I will let you know > how it goes. > > I also have the breathing difficulty, and this is so disgusting, but > have alot of mucus in my throat, and am always coughing. I go hoarse > and loose my voice about twice a year, but until I came to the group I > had no idea it was related. > > My email is jasidan@y..., if you ever need to vent please feel > free to email me, and this is for everyone in the group. Even though > I have only been here a short time, just being able to talk to someone > else who understands what I am going through has helped me so much. > My mood has gone from one of feeling sooo alone, to one of thinking I > can do this. It is amazing how much a little support can go a very > long way.> > leDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

I totally agree on the GC, also years ago thinking my immune system needed boosting, before diagnosis, I took echencia (sp) don't do that either.....I was getting sinus infections and bronchitius so what do you want to do, boost immune system. Major flare within 2 weeks.....Good Luck...Sue Marth