scared? and confused?

[Guest guest]

Hello Stills friends,

I was just reading an article on thedoctorwillseeyounow.com and it said that the

cases of AOSD that do not show improvement with NASAIDS and some steroids, are

the cases that become cronic. I was just wonderin if any of you know if that

statement is true? If you have tried everything, NASAIDS, steroids, metho and

even a tnf blocker and sill not seen any relief is there still a chance for

remission or at least more good days then bad? I know there are many of you on

this bored you have had this cronicly for many years and I think you are so

strong! I have only had it for about 10 months, but it doesn't get easier

everyday. And then I read something like that and my hope kind of goes out the

door. If there isn't much hope I guess I just wish my dr would of said that. But

I guess he has sugar coated this disease for me from the very beging. Anyways I

will let you go if you could give me advice I would appreciate it though.

 

Lots of Love,

Mandy from Wyoming

[Guest guest]

While it probably is considered chronic after a set length of time, I

don't know if there is an answer to your question. I have done little other

than get worse over the last 4 years so I know that in my case it is

chronic, but I don't know the set length a Dr would use.

Besides, there ain't a whole hell of a lot of choice in the matter, so

don't get upset worrying about it...it won't benefit you at all.

Have a good night. Kirk (The man who wants to shoot his headache at the

moment!!! A .44 Mag ought to do the trick!).

Hope you feel better soon.

--

Everything in life sucks except things that should!

[Guest guest]

do not know when it is called chronic just know that for my self 4 years got

worse each one then a few years of almost normal and now back to bad but not as

bad as the start . is it from learning to live with and except I do not know as

I do not feel I have really done either one. sorry not much help

 

the  rednecks

Marty & G.

 Stills ; An illness I know to well!

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

  and Hancock:

We Recognize No Sovereign but God, and no King but Jesus! [April 18, 1775]

:

" The general principles upon which the Fathers achieved independence were the

general principals of Christianity... I will avow that I believed and now

believe that those general principles of Christianity are as eternal and

immutable as the existence and attributes of God. "

• " [July 4th] ought to be commemorated as the day of deliverance by solemn acts

of devotion to God Almighty. "

– in a letter written to Abigail on the day the Declaration was

approved by Congress

Jefferson

God who gave us life gave us liberty. And can the liberties of a nation be

thought secure when we have removed their only firm basis, a conviction in the

minds of the people that these liberties are a gift from God? That they are not

to be violated but with His wrath? Indeed I tremble for my country when I

reflect that God is just, and that His justice cannot sleep forever. " (excerpts

are inscribed on the walls of the Jefferson Memorial in the nations capital)

 

[Guest guest]

Mandy

 just got this post so here is what i say

 tried them all got some relief from some others almost killed me from side

effect complications. did go in to what i call remission for a spell with out

any drugs but had started it I believe when taking them . I also did this at a

very very high stress full point in life . a few years of almost feeling normal

and now back to the same old but not as bad sorry not much help beyond that but

good for you doing research and reading on your own as it will help even when

talking to docs if there receptive unlike a few of my past ones

 

the  rednecks

Marty & G.

 Stills ; An illness I know to well!

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

  and Hancock:

We Recognize No Sovereign but God, and no King but Jesus! [April 18, 1775]

:

" The general principles upon which the Fathers achieved independence were the

general principals of Christianity... I will avow that I believed and now

believe that those general principles of Christianity are as eternal and

immutable as the existence and attributes of God. "

• " [July 4th] ought to be commemorated as the day of deliverance by solemn acts

of devotion to God Almighty. "

– in a letter written to Abigail on the day the Declaration was

approved by Congress

Jefferson

God who gave us life gave us liberty. And can the liberties of a nation be

thought secure when we have removed their only firm basis, a conviction in the

minds of the people that these liberties are a gift from God? That they are not

to be violated but with His wrath? Indeed I tremble for my country when I

reflect that God is just, and that His justice cannot sleep forever. " (excerpts

are inscribed on the walls of the Jefferson Memorial in the nations capital)

[Guest guest]

Hi Mandy,

I think there are other indicators that will " mark " whether the

disease will become intermittant or chronic. As Kirk mentioned,

" time " is a good marker. In some cases, Still's goes away in the

first year and never comes back. In some cases, in goes away in 2-5

years and then comes back periodically, with natural remissions that

can last years.

It seems that currently doctors are quick to treat Still's with the

stronger drugs (MTX or the tnf blocker) because the faster they can

stop the flare, the better for joints and organs. So even if you have

the type of Still's that might eventually go away, you might be on

strong drugs to protect your joints/organs while the disease is active.

You should definitely ask your rheumatologist these questions, but I

suspect he's going to give you a lot of " I don't knows. " That's the

problem with Still's--there are a LOT of " I don't knows. " I'm three

years in and I still don't know, although not a day goes by that I

don't wish for a natural and permanent remission.

I'm sorry you're scared and confused. At least you're in good

company! I think most of us are scared and confused by this thing.

/Maine

wrote:

>

> Hello Stills friends,

> I was just reading an article on thedoctorwillseeyounow.com and it

said that the cases of AOSD that do not show improvement with NASAIDS

and some steroids, are the cases that become cronic. I was just

wonderin if any of you know if that statement is true? If you have

tried everything, NASAIDS, steroids, metho and even a tnf blocker and

sill not seen any relief is there still a chance for remission or at

least more good days then bad? I know there are many of you on this

bored you have had this cronicly for many years and I think you are so

strong! I have only had it for about 10 months, but it doesn't get

easier everyday. And then I read something like that and my hope kind

of goes out the door. If there isn't much hope I guess I just wish my

dr would of said that. But I guess he has sugar coated this disease

for me from the very beging. Anyways I will let you go if you could

give me advice I would appreciate it though.

>  

> Lots of Love,

> Mandy from Wyoming

[Guest guest]

Mandy It's diferent for every body!!

The support group member that recomended me to her RD. went undiagnose for 5

yrs. yet she went into remision after 4 yrs. of treatment. I'd say she'd have

been considered a cronic case after all that time.

The thruth odf the matter is doctors do NOT know enouht about stills & they

just give their own personl opinions> so don't lose hope over what you hear &

hope YOU can get it under control. The one thing 's for sure It doesn;t go

away for ggod, even on remission you get the bad days when you just can't do

much & feel it coming & have to rest.so you've got to learn to adjust right

away to that & be very apprecaitive when you do get to be well enouht to be up

& aroud, aven with pains & other symptoms but you're at least not ;laid o

VIVI

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Thanks for this iNFO. first time I hear althis & it it good news to

some that It may go into remission even for a period of time.What a hope !!

I only knew of ONO person but she still feels it coming So it 's loke never

totally gone. at least gies you a brake.

VIVI

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Don't worry Mandy, of us " chosen few " who have never seen a remission the

weight of life itself becomes too much at times. I am in no way saying that

those who have had (or are in) a remission had it any easier, but at least

they achieved a goal.

I know how you feel when you want everyone to hear you scream and it

seems that no one does, but one thing I've learned from being on this list

for over 4 years is that even if you aren't getting many replies, people are

in fact listening. Sometimes I don't quite know how to respond to a certain

question or just plain don't feel up to it at the moment.

I have been to the point where I was BEGGING GOD to kill me that very

second, if not sooner! I've been there more times than I can count. I've

watched the course of my life take a hard hitting " 180 " and still at times

don't believe it actually happened to me! Last night when I replied to you

my headache was so damn bad I was asking God to kill me again, and it isn't

a whole hell of a lot better now.

My blood work has been showing signs of a flare for the past 7-8 months

and I've been in a rough flare for at least the last 2 months. I can't wait

until July 1st when I get to see my RD again (even though I just saw him 10

days ago...and he is 100 miles from my house) as he is going to decide

whether to start me on Kineret or not. I had to call there today and beg

them to allow me to bump up the prednisone again as I've had ZERO energy &

TONS of pain for the last 3 days, but felt ok last week when it was @ 60

mg/day. They really hate to allow me to go up at all as I already have

osteoporosis of my spine, and Prednisone played a large role in that

happening in such a short amount of time.

I've also had " explosions " (posts to the group) where I essentially

screamed at anyone who was listening even though they didn't deserve it or

have anything to do with it in their lives! Don't worry, that's why we're

here. But we're also here for the good times, so don't be afraid to post

when something actually does go your way. Hell, even a Happy Birthday from

people on the list helps cheer me up when it is my B'Day.

If you ever want to email me privately, you can at kbonanny@... .

Just keep in mind that there are times when I don't go near the computer for

days on end...it all depends on how I feel. A good example is coming up, or

so I hope!!! I coach Mini-Football from July until the season ends (usually

in early November as we have yet to miss the playoffs since I've been there

and have made the Super Bowl once) and by the time practice is over the last

thing I look at is usually the computer.

In the summer I used to feel as good as I would all year long and that

would keep me off for times as well. I was hoping & praying that the same

would be the case this summer, but it isn't looking that way and I know I'm

not far from being placed back into the hospital the way I've been going.

It's an " earry " feeling, knowing that you're getting worse and nothing seems

to be helping.

Well, here's to hoping this finds you feeling better and

remember.....almost everyone on this list has been or is in the same boat as

us....or someone in their family is. Trust me....we understand!

Have a good one, Kirk.

>

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Mandy,

Never keep it inside. If nothing else, it's good to get it out. You

have remember that everyone on here is sick. We are all reaching

out for support. Sometimes that means we take and we don't give.

Sometime that means we aren't even reading the emails. Sometimes we

just don't have an answer or something to say. It's certainly not

personal. We have all felt alone here at one time or another,

saying something that seems to be fall on deaf ears. I know I have

asked questions and nobody has answered. It really isn't personal

though.

We are lucky to have you here and you have definitely added a lot to

our group.

I'll have to go back and find your question. I've been insanely busy

at work and haven't been able to read regularly. I was 26 when I

first fell ill (35 now), so I can probably help you through some of

your fears.

Houston, Texas

[Guest guest]

Hi Mandy, I went online and read that article after reading your

post. It was very interesting, but very depressing. Once again it

rams home the point that there is not very much known about this

disease. I was only diagnosed in Feb and I have found it terribly

hard for this short period of time, so I am hoping it won't go on

like this for YEARS. My specialist doesn't tell me much either, I

think he sugar coats it as well. I think he is just seeing what

happens each time I visit-give me the bad news only if he has to!

Sorry, can't answer your questions about the drugs and the chronic or

non-chronic side of it, as I am a newbie! I am on prendisone and

methotrexate and still have a fair bit of pain....anyway, good luck

with it all; if you find any answers be sure to post as I am always

reading the posts for new info. Keep your chin up; who knows what

tomorrow may bring.... Libby. :-)

>

> Hello Stills friends,

> I was just reading an article on thedoctorwillseeyounow.com and it

said that the cases of AOSD that do not show improvement with NASAIDS

and some steroids, are the cases that become cronic.

[Guest guest]

Mandy,

AFter 9 years, I am pretty sure I am classified as chronic (only

been diagnosed and medicated for 5 of those years). I do have a lot

more good days than bad now. I work a more than full-time job and

have only had to take a break once (i also have no choice but to

work until I drop dead as I am single with no family support). My

mind has come back and I am less tired. I do more things on the

weekends now, like gonig out with friends, jogging with my dogs, and

gardening. in the early days I could do nothing but sleep and be in

pain, so it's a marked improvement for me.

Like said, you'll hear a lot of " I don't knows " but all you

can do is try different meds and try to get better. A positive

attidude is going to go a long way to helping you recover. There

will be bumps in the road, but it can get better. and we have to

hope that it's going to.

at the same time, you do haev to be realistic about your situation.

You need to learn your limitations and live within them so your body

can try to heal and get better. Over time you'll learn how much you

can push yourself and when to back off.

angela

Houston, Texas