Re: Question?/Rene

[Guest guest]

In a message dated 06/17/2000 11:29:08 PM Eastern Daylight Time,

AsOneWolf@... writes:

<< Rene,thank you for your response concerning the rash. My question to

you now is since you have Lupus and Polychondritis how do you tell

the difference between the two? Also my Doctor says I have

Polychondritis but has never used the word Relapsing, again what is

the difference? I have been reading everything but I think my mind is

in overload so I am not retaining anything. Is that because of the

Lupus or RP? (LOL) HELP I am so confused!

Love, Terry T

>>

Terry

hope you don't mind me jumping in here but I also have lupus. the way my

doctors talk it makes no difference which is flaring because they essentially

treat them both the same. I was told relapsing in the beginning but now they

just say polychondritis because for me I am not in remission and actually

haven;t been in a very long time. I am not always in bad shape though,

sometimes I feel quite good actually but labs and such always let us know the

disease is present. for me that is why the relapsing was taken out

love, hugs and hope

Angie

[Guest guest]

In a message dated 6/18/00 12:52:55 AM Central Daylight Time,

rpawareness@... writes:

<< Also my Doctor says I have

Polychondritis but has never used the word Relapsing, again what is

the difference? I >>

Terry and Angie,

My Doc told me one thing about having Polychondritis is you will never be

able to get off of pred. Secondly, Angie correct me if I'm wrong as we both

have dealt w/this terrible disease. One way I know that it is Polychondritis

is the burning that I get in my body. The Ulcer's that appear in my mouth

looks as if I have the measles, this is Lupus. Cartilage of course as you

already know is Polychondritis.

Angie is correct they treat them both the same. However, here lately my

doctor tells me whether or not it is lupus or Polychondritis. They have a

new drug out G1057, I think that is the name of the drug, not sure. My doc

told me this may work for Lupus, but not for my Polychondritis. I'm not sure

why my doc is pointing out the difference between the Polychondritis or Lupus

but she does now. (GO FIGURE) Oh and one other thing w/Polychondritis your

white cells are very high. Usually w/Lupus your white cells are low. I

personally know the difference when I'm having a flare, but that's only

because I have lived w/this disease. I didn't tell you that I have told my

doctors before they dx me w/Polychondrits that I didn't only have Lupus there

was something else wrong w/me and they said oh no, it's lupus. As we all can

see I was right they were wrong. Angie is also right about never going into

remission, and there are some days I feel like a human being. Sure I'm

having some type of problem but it is bearable. Hey! When you're use to pain

you're use to pain. The pain is not always unbearable. Matter of fact today

is one of those days, my nose is stuff and it feels as if something is

gnawing at my nose (Polychondritis), my leg (nerve) has a funny sensation in

it, but I'm able to cope. So I can't complain today!!!!

I quess I had the need to responded to this, because at one time I wanted to

know the difference and I had a discussion w/my doctor about it. By the way

are you on Meth?

How much do you take a week? I take 20mg a week. I take it on Sundays at

bedtime. Get up in the morning and start drinking water. I drink 120

ounces. I mention this to my doc. She ask me if I needed to evacuate a lot.

I laughed (LOL) The reason I drink so much water, I'm hoping that I'm

cleaning out my kidneys and liver from any residue from the Meth. Oh yes

before I forget, I'm having a lot of swelling in my ankles now. Went to the

doc's on Friday, had to due the 24 hour prep thing, waiting for my results.

I'm hoping my kidney's are okay.

Everyone have a good day!!!!!

Love,

Rene