Re: Welcome Bob

[Guest guest]

Hi Bob, welcome to the greatest support group ever. I'm sorry you need us,

but glad that you found us. I looked at all those beautiful libraries and

you should be very proud.

It sure sounds like you have all the RP sypmtoms. I had a biopsy and it

proved inconclusive. It showed " inflamation " so I don't know how accurate

they really are. Are you on any medication now for the ear flare? It is so

important to stop the flares as soon as possible so that no damage is done.

Please feel free to just jump in and ask all the questions you want. This is

how we all learn. There are so many helpful members in the group and someone

will have an answer for you or be able to lead you in the right direction to

find one.

We will be sening out the Brochures. These are funded by our Relapsing

Polychondrits Foundation which is entirely separate from the support group.

If you would like to see our web site for the Foundation, it is at

www.polychondritis.org. It is still under construction, but will hopefully

be done soon. If you wish to make a contribution and please feel free to.

You will then be added to the Foundation site and will receive the

newsletters. If you have any questions about the Foundation, please feel fee

to ask.

I'm sorry to say that you can NOT copy or reprint our brochures. It is

printed that way on the Brochures. But you may order more when ever you need

them. They are Free. All we ask is that you give us the names of the places

that you have put them so that we may track them and see what places are

doing the most good. That way we can keep restocking them there.

Again welcome and please just feel free to jump right in.

[Guest guest]

,

It's OK that we don't reproduce brochures locally. I

just needed to know. I'm sure it is on the brochure.

The only thing I am taking right now Betameth Augm...

(generic for DIPROLENE OINT .O5%) The flare is bad and

there is no doubt that damage is occuring. What is

available to cool down a flaming ear? Anyone?

The EENT I saw gave me an antibiotic he called

" gorilla-cillian " because it kills everything. I

finished that about 10 days ago.

Thanks for the quick reply. Bob

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[Guest guest]

Bob, I'm sorry to say that antibiotics won't stop a RP flare. YOu need a

steroid. Most of us are or have been on prednisone. The drug we love to

hate. With my first flare I started out on 80mg. Each of us are different

so we all take different meds. I think the pred is the most common drug we

have all taken. I have been on pred for over 3 years and am now down to 6mg.

Some only need it once for a flare and it never comes back or waits a long

time before it does. If you flare continutally when not on pred or another

anti iflamatory then they will usually add something like methotrexate,

Imuran, Dapsone, Plaquenil, Cytoxin, Remicade... there are a bunch. A good

rhumatologist is what you need, or a good ENT who knows about RP. On the

Foundation site is Dr. Trenthams article that you might be interested in

reading if you haven't. Just don't believe the prognosis. LOL

I really think you better see a dr who will get you on a dose of prednisone

to stop this flare. RP can damage the inside of the ear and cause loss of

hearing, it can cause blindess, airway involvement, and alot of other things

if not stiopped dead in it's track. I don't want to scare you, but want you

to get this under control.

Please let us know how you are.

[Guest guest]

What is

> available to cool down a flaming ear? Anyone?

>

Thanks for the quick reply. Bob

>

Prednisone, prednisone, and more prednisone! This may

not be the answer that you or your doctor want....but

it is truly what will stop a flare in its tracks.

Once the flare is stopped, then your doctor will

probably need to add other medications as he sees fit.

Hope you get this under control!

squeek

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