Re: Confused new member (to from Joan)

[Guest guest]

Hi Joan, I don't remember exactly why they chose Remicade. I think it may be

because it

works faster. They are in a big hurry to eliminate the prednisone. I was up to

160 mg daily

at one point - really bad news. I can't seem to get below 20 mg without getting

severely

ill.

-

>

>

> In a message dated 9/11/2006 3:10:56 A.M. Eastern Standard Time,

> statpdq@... writes:

>

> The doctors here feel

> it is too rare of a disease for me to have. Whatever!

>

>

> This statement absolutely infuriates me!!! Who do the docs think will get

> this too rare of a disease to get?!?!?! Yes!, we know it's rare ...

> personally, I don't think it is as rare as the medical community seems to

think it is

> ... just look how the group has grown!! Anyway, your docs know that

> " someone " gets it ... why not you? why you, obviously is the most important

> question...

>

> , I am surprised your docs are going to try Remicade before MTX. It is

> usually the other way around. MTX seems to help all of us that are on it.

> In fact, I don't ever want to have to go off it. If I skip my weekly dose, I

> am in agony by day 4 without it.

>

> Oh well, just sharing my thoughts as I am reading along some posts...

>

> love, hugs, prayers to all,

> Joan

>

[Guest guest]

My family has heard of sacroidosis lately. I think some of the rescue workers

from 9/11

have been diagnosed with it (I saw that in a TV show about them), so it is

talked about

more than before. It's terrible more people are getting it.

-WEndy

In a message dated 9/11/2006 3:10:56 A.M.

Eastern

Standard Time, statpdq@... writes:

> The doctors here feel

> it is too rare of a disease for me to have. Whatever!

>

> This statement absolutely infuriates me!!! Who do the docs think will get

this too rare

of a disease to get?!?!?! Yes!, we know it's rare ... personally, I don't think

it is as rare as

the medical community seems to think it is ... just look how the group has

grown!!

Anyway, your docs know that " someone " gets it ... why not you? why you,

obviously is the

most important question...

>

> , I am surprised your docs are going to try Remicade before MTX. It is

usually

the other way around. MTX seems to help all of us that are on it. In fact, I

don't ever want

to have to go off it. If I skip my weekly dose, I am in agony by day 4 without

it.

>

> Oh well, just sharing my thoughts as I am reading along some posts...

>

> love, hugs, prayers to all,

> Joan

>

>

>

>

>

>

> ---------------------------------

> Stay in the know. Pulse on the new Yahoo.com. Check it out.

>

[Guest guest]

, It's good to see YOU posting. I was wondering how you were. It seems like we haven't heard from you in awhile. I was just thinking about you recently and how you were doing. I hope that no news is good news? I hope you are doing okay. We like to hear from you too.Hugs, Debbie T. Moderator Solberg wrote: Joan, good to see you posting. I also believe that there are alot more cases than what the doctors believe of sarc out there, too. I think more and more of them will be popping up over time and that it will finally be a more 'popular' (ha) disease and will finally get more notice...as in research and funding. I hope

you're hanging in there and taking good care of yourself. hugs S.pickstands@... wrote: In a message dated 9/11/2006 3:10:56 A.M. Eastern Standard Time, statpdq (AT) yahoo (DOT) com writes: The doctors here feelit is too rare of a disease for me to have. Whatever! This statement absolutely infuriates me!!! Who do the docs think will get this too rare of a disease to get?!?!?! Yes!, we know it's rare ... personally, I don't think it is as rare as the medical community seems

to think it is ... just look how the group has grown!! Anyway, your docs know that "someone" gets it ... why not you? why you, obviously is the most important question... , I am surprised your docs are going to try Remicade before MTX. It is usually the other way around. MTX seems to help all of us that are on it. In fact, I don't ever want to have to go off it. If I skip my weekly dose, I am in agony by day 4 without it. Oh well, just sharing my thoughts as I am reading along some posts... love, hugs, prayers to all, Joan Stay in the know. Pulse on the new Yahoo.com. Check it out.

Get your email and more, right on the new Yahoo.com

[Guest guest]

Hi !

How have you been doing Sweetie? I've missed you and the gang. My arms just drive me crazy. I guess I will try the surgery soon. Yes, someone out there in the medical community ... probably in NY ... has to recognize this disease is taking over too many people! I am surprised SS hasn't inquired more about it!!!

Okay, must go now!

Hope you have been doing okay, ... I know you aren't well a lot and have very little energy. Has any of that changed recently?

Love and hugs and lots of prayers to you!,

Joan

Joan, good to see you posting. I also believe that there are alot more cases than what the doctors believe of sarc out there, too. I think more and more of them will be popping up over time and that it will finally be a more 'popular' (ha) disease and will finally get more notice...as in research and funding. I hope you're hanging in there and taking good care of yourself. hugs S.