Re: New Old Kid on the Block

[Guest guest]

Welcome Iguana Lil, aka Janis, aka IslandWoman! lol! (cool! Virgin Islands!)

This is great group of people, I hope you will soon feel like you know

everyone. I have had Still's since 1990 and have been dealing with a 'low

level'

of it since about 1998. Have run the gamut of mtx, pred, NSAIDS etc etc, and

had all the different symptoms at one time or another, also. You will soon

find out how very much alike we all are, no matter how individual we are

also! Looking forward to your input!

Have a tolerable day!

Tammi

[Guest guest]

Hey Janis,

Glad to hear from you, how is island life? Can I come??? Tell us about your

life

there is sounds very interesting. Glad to hear from you

Lynn

-- New Old Kid on the Block

Hi, folks!

I'm Iguana Lil (a/k/a Janis - known on some other message boards as

IslandWoman). I have AOSD -- and was finally diagnosed about 5-

years ago. My symptomology goes much further back, however.

I am guessing that I may have had Still's from my early 30s (I'm 60

now) and it became acute about 15-years ago with the onset of

pericarditis. I have the rash (chest/abdomen), I got the fevers

(though not daily like most).

My hands and feet are my most affected joints, though my hips are

starting to run a close third to them.

I live in the land of no rheumatologists (St. Croix in the US Virgin

Islands) -- and am treated with prednisone only at this point. (No

insurance until Medicare from my SSD kicks in early next year). I

tried methotrexate but had a near fatal reaction to it on my first

dose. I would still recommend it to anyone, because it is a proven

DMARD and the type of reaction I experienced is very, very rare

indeed. I've tried Sulfasalaine -- and had to discontinue that due

to side effects. I try to maintain on 10 mg. of pred, though

occasionally I have to bump it up a bit.

Thank-you for allowing me to become a member of this group -- and I

hope to get to know you all and be a contributing member.

Iguana Lil

[Guest guest]

Hey Janis (Or should I call you Iggy now?)

Glad you made it here!

Hugs, =)

[Guest guest]

Hi Janis:

Late i know as welcomes go but better that then never. LOL I am like you

manly the feet and hands (wrist & forearms) when you get medicare and learn

to use it let us all know some of the things that work for you or do not

with it . every thing i have looked in to with it told me it was really not

much better then nothing unless your hospitalized . such a shame we have to

pay for it with the little we get on ssi. I also know that at lest for me a

secondary insurance is a must . with it it covers more meds and doc visits

also if you become an over night guest at a hospital it covers more of the

cost . if you or any one other has some tips on this let us all know as i

feel so in the dark with medicare and what it dose and dose not cover . or

even trying to find a doc that will take it here in the calif land . any

hoot lets have the next gathering at Janis's LOL as if she stress's out

about it we all will understand LOL just joking

kicking dragon butt every day and tired of it

hugs all

Marty

Hi, folks!

I'm Iguana Lil (a/k/a Janis - was finally diagnosed about 5-

years ago. My symptomology goes much further back, however.

I am guessing that I may have had Still's from my early 30s (I'm 60

now) and it became acute about 15-years ago with the onset of

pericarditis. I have the rash (chest/abdomen), I got the fevers

(though not daily like most).

My hands and feet are my most affected joints, though my hips are

starting to run a close third to them.

.. (No

insurance until Medicare from my SSD kicks in early next year). I

[Guest guest]

welcome to the group Iguana Lil. I am line and am French, living in France.

Been ill for over two and a half years now. Currentlyl on MTX and trying to wean

off so as to be able to try and get pregnant. Currently in a flare however but

not completely losing hope.. I am sure you will find everything you've been

looking for here and much more.

Have a great day!

iguana_lil a écrit :

Hi, folks!

I'm Iguana Lil (a/k/a Janis - known on some other message boards as

IslandWoman). I have AOSD -- and was finally diagnosed about 5-

years ago. My symptomology goes much further back, however.

I am guessing that I may have had Still's from my early 30s (I'm 60

now) and it became acute about 15-years ago with the onset of

pericarditis. I have the rash (chest/abdomen), I got the fevers

(though not daily like most).

My hands and feet are my most affected joints, though my hips are

starting to run a close third to them.

I live in the land of no rheumatologists (St. Croix in the US Virgin

Islands) -- and am treated with prednisone only at this point. (No

insurance until Medicare from my SSD kicks in early next year). I

tried methotrexate but had a near fatal reaction to it on my first

dose. I would still recommend it to anyone, because it is a proven

DMARD and the type of reaction I experienced is very, very rare

indeed. I've tried Sulfasalaine -- and had to discontinue that due

to side effects. I try to maintain on 10 mg. of pred, though

occasionally I have to bump it up a bit.

Thank-you for allowing me to become a member of this group -- and I

hope to get to know you all and be a contributing member.

Iguana Lil

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[Guest guest]

Hi, Marty, and thanks for the welcome.

Medicare is now offering a lottery for RA patients for drugs -- and

I don't know if we Still's patients would slip in under that

heading. The drugs are discounted -- and if one is really low

income, they are really reasonable.

http://www.news-medical.net/?id=2832

There's even more about it at other sites if you Google " medicare

drug lottery. " Evidently, this program is under utilized.

Starting in 2006 (January, I believe) certain drugs will be covered

by medicare -- but whether they will exclude us because of our

Still's designation, or allow it, I am not sure. Perhaps our docs

could be " creative " in getting us this funding.

I am ambivilent about trying some of the heavy hitters. My

aforementioned tries at DMARDS could be considered a less that

brilliant success. I am, after all, getting long in the tooth and

if I can maintain some semblance of a life on a relatively low level

of pred, I'm not sure I'd want to risk the big guns. Not a popular

opinion, I know, but hey, we all have to come to terms with our

diseases as best we can.

Thanks again for your welcome -- and it wasn't late at all.

Iguana Lil

> Hi Janis:

> Late i know as welcomes go but better that then never. LOL I am

like you

> manly the feet and hands (wrist & forearms) when you get medicare

and learn

> to use it let us all know some of the things that work for you or

do not

> with it . every thing i have looked in to with it told me it was

really not

> much better then nothing unless your hospitalized . such a shame

we have to

> pay for it with the little we get on ssi. I also know that at lest

for me a

> secondary insurance is a must . with it it covers more meds and

doc visits

> also if you become an over night guest at a hospital it covers

more of the

> cost . if you or any one other has some tips on this let us all

know as i

> feel so in the dark with medicare and what it dose and dose not

cover . or

> even trying to find a doc that will take it here in the calif

land . any

> hoot lets have the next gathering at Janis's LOL as if she

stress's out

> about it we all will understand LOL just joking

> kicking dragon butt every day and tired of it

> hugs all

> Marty

> Hi, folks!

>

> I'm Iguana Lil (a/k/a Janis - was finally diagnosed about 5-

> years ago. My symptomology goes much further back, however.

>

> I am guessing that I may have had Still's from my early 30s (I'm

60

> now) and it became acute about 15-years ago with the onset of

> pericarditis. I have the rash (chest/abdomen), I got the fevers

> (though not daily like most).

>

> My hands and feet are my most affected joints, though my hips are

> starting to run a close third to them.

>

> . (No

> insurance until Medicare from my SSD kicks in early next year). I

>

>

>

>

>

[Guest guest]

Hi all and a big thank-you for the warm welcome.

It really will be fun getting to know each and everyone of you --

and I hope that I soon figure out how to follow these threads.

Iguana Lil

> Hi, folks!

>

> I'm Iguana Lil (a/k/a Janis - known on some other message boards

as

> IslandWoman). I have AOSD -- and was finally diagnosed about 5-

> years ago. My symptomology goes much further back, however.

>

> I am guessing that I may have had Still's from my early 30s (I'm

60

> now) and it became acute about 15-years ago with the onset of

> pericarditis. I have the rash (chest/abdomen), I got the fevers

> (though not daily like most).

>

> My hands and feet are my most affected joints, though my hips are

> starting to run a close third to them.

>

> I live in the land of no rheumatologists (St. Croix in the US

Virgin

> Islands) -- and am treated with prednisone only at this point.

(No

> insurance until Medicare from my SSD kicks in early next year). I

> tried methotrexate but had a near fatal reaction to it on my first

> dose. I would still recommend it to anyone, because it is a

proven

> DMARD and the type of reaction I experienced is very, very rare

> indeed. I've tried Sulfasalaine -- and had to discontinue that

due

> to side effects. I try to maintain on 10 mg. of pred, though

> occasionally I have to bump it up a bit.

>

> Thank-you for allowing me to become a member of this group -- and

I

> hope to get to know you all and be a contributing member.

>

> Iguana Lil

[Guest guest]

Hi Janis I am Liz I am 50 I am Ok ish as long as I get rest.Do eat a lot of

fish in St Croix?? That should help a bit. My rheumy says I also have

osteoarthritis now. I do not take glucosamine and chondroitin but am thinking

about

it a lot of people think it is good. Stay in tune with us and tell us how

you are feeling Hugs Liz NJ

[Guest guest]

Welcome Lil;

I'm nicknamed Melt and diagnosed in 1977 and am now 47. We look forward

to knowing you also. Smiles, Melt

----- Original Message -----

From: iguana_lil

I'm Iguana Lil (a/k/a Janis - known on some other message boards as

IslandWoman). I have AOSD -- and was finally diagnosed about 5-

years ago. My symptomology goes much further back, however.