Re: Hello Seycon

July 26, 2006

Hi Seycon: (don't know what else to call you lol)

Welcome! The people in this group are wonderful, very

supportive and caring, and there is always lots of

great information. I have had RA for 7 years, and

also have OA, Raynaud's and Fibro. I am 52, married

for 24 years in August to my best friend, and have two

great kids 19 and 22. We live on a small farm in

southern california.

Have you tried any of the biologics? I am currently

on Enbrel, with Methotrexate and Mobic, and Ultram for

pain, and have had very good success with it. I have

been on it now for about 8 months, and it has my RA

under really good control. The pain I am having now

is predominantly fibro pain, and my rheumy and I are

working on getting that under control too. I take

different meds for the fibro, blood pressure, asthma,

and anti-depressant, so I have a very crowded bathroom

counter lol.

I am so sorry that you are starting to experience

organ damage due to your Prednisone use. It's a drug

that I try to use as little as possible because I

don't like the way it makes me feel mentally, but sure

love the relief of pain it gives. Are you working on

getting off of that? How much were you taking and for

how long before the organ damage became diagnosed?

That is so scary.

I would certainly recommend that you try the new

biologics, Enbrel, Humira, Remicade, Orencia, and

Rituximab. Enbrel is the drug with the longest track

record and does well for many people. It's a shot you

give yourself at home, same for Humira. Remicade is

done in hospital by IV infusion. I think that Orencia

and Rituximab are the same - IV. I am sure if I am

wrong about any of this, someone will come to my

rescue and set me straight lol.

I hope that you are able to get off Prednisone soon,

and find a medication that will help with your RA.

Take care - keep in touch -

Kathe in CA

--- seyconmommy <seyconmommy@...> wrote:

> I am a newbee to the group, but have been diagnosed

> with RA for almost

> 8 years, July 31 is my annivesery. Looking for a

> group to find out

> about new treatments and overall support. I have

> done all the disease

> modifying drugs, with no success. Currently I am on

> a regime of

> methetrexate, prednisone, and nsaids. Got about 2-3

> weeks between

> flares, and am now experience organ damage due to

> prednisone(25mgs

> daily). I know this all to be expected, but hoping

> something else is

> out there that may help.

>

> I look forward to your feedback. Take care and try

> to stay straight.

>

__________________________________________________

July 26, 2006

Thank you for all your encouraging words. They are helpful. I have done all

the biologicals with no success or prolong periods of infections. Rhemmy says

no way of trying anymore. I try doing tapering doses of prednisone, but am

battling the question of low dose or no prednisone equals days in bed or extreme

pain, or do I enjoy life with prednisone and deal with the effects as they come?

Keep hoping that the next great treatment is on the way--or at least I can say

I tried it all. Truly starting to believe quality is better then quanity.

I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a

wonderful year old grandson. My oldest daughter, was diagnosed with Myasenthia

Gravis 2 years ago, so always keeping up a brave front for her, so she will

fight her auto-immune disease to the fullest. Carry huge guilt over the

likelihood that I passed the susecptibility on to her.

I am currently moving to a vegan lifestyle hoping this will do some

good--anyone use any other natural " medicine " ?

Well hope I didn't come off as a whiner, try to keep my pity parties to a

minimum.

Please take care--Debbie

Kathe Sabetzadeh <lv2ryd@...> wrote: