Re: Hello Debbie

[Guest guest]

Hi Debbie:

Sorry that your choice of medications are so limited.

ly, if I were in your place, I might choose to

use the Prednisone forever, at the lowest dose

possible, to get a quality of life, if that is all

that is helping you right now.

I am so sorry for your daughter's diagnosis. Do not

beat yourself up with guilt over that - okay, maybe

the autoimmune problem comes from you, or your side of

the family, but you certainly never in this world

would have wished this on any of your children. You

did not do this to her - it happened - same as

autoimmune disease happened to you. You did not do

this on purpose - it is not your fault - you have no

need for guilt - mom's have more of that then they

need on a regular basis lol, why add more???

Take care of yourself too, and enjoy your grandchild -

my kids are not even dating anybody yet, so the dream

of a grandchild is still but a glimmer in my eye!

Kathe in CA

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

> 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:

> 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 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.

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>