Re: Wondering what's next w/ Stills

[Guest guest]

Katarina

 at one time I was off all meds . this lasted about 4 or so years and only in

the last year did it start ot get bad again . the meds now do seam to be helping

and yes it includes MTX but no pred and I am happy about that . the MYX did make

me some what depressed mentally but the happy pills the docs have me on for it

and pain with the fibo are helping big time and I can feel it and the ones

around me say I am not as angry now so that is always a good thing

 glad your getting good relief and for you I hope it becomes a full relief as in

remission with no drugs and for a very very long time

Hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

Thanks Marty- glad your meds are helping you now and it is great

that you had 4 years off of the meds.

Hope everyone has a good day! Also, Welome .

:-)

Katarina

>

> Katarina

>  at one time I was off all meds . this lasted about 4 or so years

and only in the last year did it start ot get bad again . the meds

now do seam to be helping and yes it includes MTX but no pred and I

am happy about that . the MYX did make me some what depressed

mentally but the happy pills the docs have me on for it and pain

with the fibo are helping big time and I can feel it and the ones

around me say I am not as angry now so that is always a good thing

>  glad your getting good relief and for you I hope it becomes a

full relief as in remission with no drugs and for a very very long

time

> Hugs

>  

> the  rednecks

> Marty & G.

> the redneck's my space http://www.myspace.com/martyg58

>  

>  Stills ; An illness I know to well!

> To learn about Stills  http://www.stillsdisease.org/stills_info

> If you find yourself in a hole, the first thing to do is stop

diggin'.

>  

> In the old days a man who saved money was a miser; nowadays he's a

wonder.  ~Author Unknown

>  

>

>

>

> " Taking my gun away because I might shoot someone is like cutting

my tongue out because I might yell `Fire!' in a crowded theater. "

> -- Venetoklis

>  

> a government and its agents are under no general duty to provide

public services, such as police protection, to any particular

individual citizen...

> -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

>

>

>

>

>

[Guest guest]

Dear Katrina,

I'm very happy to read you're doing well so soon. That is encouraging for

you. I think what you are asking is a bit difficult to answer because I

don't believe life is ever the same 'normal' after Still's. I got sick at 19

and did go into remission steadily as the years passed and am now on a

maintenance dose of Naprosin and have no active Still's just the ravages of

the arthritic joints when it was very bad in the early years. So, I have had

some hard years with pain but my life has been relatively normal I think and

not all bad and I like to look at it this way. I was sicker at 19 than I am

now at 50 so I think that although I'm a bigger baby about the pain, I'm

ahead of the game, lol.

Good luck to you and it sounds like you're going to possibly have an earlier

remission because you have the latest medications than they did in the late

70's and I hope life will be much more normal and easier for you.

Have a happy day,

Has anyone gotten to a point where they were able to wean off of

meds completely and have a *normal* life?

Katarina

[Guest guest]

Katarina,

I got this disease in 1990.? I was on and off medications for several years.?

When i felt good, I did not take the meds.? Sometimes this would last for weeks,

months, years.? It really varied.? Just as this disease varies for each person

it afflicts. In? 2001, this disease hit me with a vengeance and knocked me right

on my butt, or a slap in the face we call it....? It wasn't till late 2006 that

I was able to come down on the steroid dose.? That was only because my new RD

due to a move to AZ was really interested in saving my life.? I almost lost

twice.? She kept me alive and put me on cellcept. Now, I am doing very well.?

Sometimes when I look back on that time, I can hardly believe how sick I was.?

At the time, I did not even realize I was as sick as I was, interestingly

enough.? Now, that I am so much better, almost " Normal " again, I just cannot

believe it when I look back at that time.

K

Wondering what's next w/ Stills

Hi all,

I joined the group a few months ago and have been recently reading

the posts.

It seems like SD affects everyone differently. I'm 38 and was

diagnosed in April.

I'm on Methotrexate (15mg, once a wk injection)and weaning off the

prednizone (3 mg a day and will be finished by the end of the summer)

Prior to the Methotrexate, my bones like they were being fed through

a pencil sharpener. Walking was tough, I was highly anemic w/ a

super high ferratin level. The only plus was that I lost 32 lbs

which, after three kids, put me where I needed to be.

Now, 8 weeks later with the injections, all of my levels are normal,

energy is back and I have a constant dull ache in my joints but I'm

functioning at 80%. Swelling is down, no fevers or rashes. But, I

put five lbs on.

I am so very gratetful and am wondering if anyone has had a similar

experience? How long does this reprieve last? I was advised that

the injections may not work after a year of so :-(

Has anyone gotten to a point where they were able to wean off of

meds completely and have a *normal* life?

Sorry for rambling and I'm most appreciative for any feedback.

Tnx,

Katarina