Re: New to this forum

[Guest guest]

Hey Hal..It does sound like Stills. What do your doctors think. Not everyone

has every single symptom...Hugs Liz NJ

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[Guest guest]

Hi Hal,

Boy that sure does sound like Stills, might be interesting to talk

to your doc about it to see if the diagnosis should be changed.

Treatment, however, is pretty much what you are currently on. The

only biologic I see you didn't mention trying is Kineret. It's a

daily injection and has worked wonders for me and some others (and

not worked for others). I too had Enbrel work for awhile and then

stop. Might want to research the Kineret if the Orencia isn't

working too well.

I presently take Kineret, Plaquenil, Arava, Folic Acid, Potassium,

and Tramadol for SD.

This is an amazing board with lots of great information. May I

suggest you search the archives for information you may be looking

for. You can go in and search fevers for instance and find all of

our old posts on the subject. It might provide you with further

information.

Glad you found us, and don't hesistate to ask questions.

Houston, Texas

[Guest guest]

Hello Hal,

Welcome. I'm , nursing student in western NC, mom of 2 year old son,

married for 8 years. I was diagnosed in 1996 with Adult Onset Stills. I think

almost all of us here have different symptoms. I had the rash with the first

flare, but very faint since then. Fevers, night sweats, joint pain mostly in

knees.

I always have a very high sed rate during a flare, but all other tests are

usually normal. I am on the tail end of my first flare after a 7 1/2 year

remission. I am on 5 mg prednisone per day, tramadol 2-3 times a day, lexapro

for

depression, and diazide for edema. I am doing pretty well, but fear decreasing

the prednisone. Hope you enjoy the group and that you have a pain free day.

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[Guest guest]

Hi Hal!

Please excuse the delay in writing you back. It's been one of those

days, between my son being sick, my husband is out of town (again)

the groomers came to take care of the dogs (1 hour reprieve for me)

and the usual housework, this is the first chance I've had in a

couple of days to actually sit down and read posts.

Anyway, welcome and I'm sorry. I'm curious, you didn't mention a

rash when you listed your symptoms. Did you or do you have one?

It's not necessarily a midigating factor, I was just wondering.

Definately talk with your doc and find out what your sed rate is

(always good to know). Personally, mine varies. Some tests it's

good (around 16) others it's been around 56 or higher. At the moment

I don't remember what this last test showed.

There's a chat group on Thursday evenings, you should join us. I'm

not always on but when I do join in it's a good time. People come

and go on there from 6 p.m. on, think about it.

As for meds, I'm one of those lucky people that falls into the

cracks. Due to association of some drugs I can't take them because

of severe allergic reactions to other things. I've heard great

things, though about Kineret. Talk with your doc, look into it.

Take care and be well.

Ellen

Palm City, FL

[Guest guest]

>Hi, Hal! My name is Ann Heath and I am a family practice doc on a Navajo

reservation in the mountains of western NM. However, I grew up and used

to live in Clinton, IL-central part of IL and probably about 150 miles

from you! We loved to eat at that restaurant just inside the IN border on

I-?72 that has great bread-does that ring any bells? Clinton, IL is the

place where Lincoln gave his fool some of the people speech and our

library there has a great Lincoln section! How's that for a small world!

Anyway, I've been diagnosed for 4 years now with Stills and went through

Enbrel, Humira, Orencia, and have had my 1st 2 Rituxans. Your symptoms

sure sound suspicious for Still's. Do you get any rheumatoid nodules or

the really, really red, warm, swollen joints. I have a fair number of RA

patients in my practice (it's more common in Native Americans) and have

never had one with as high a fevers as us Still's folks get. It would be

good to know what your sed rate, CRP, are and ferritin level (sometimes

high in Still's and not in RA). Any rash at all? I'm assuming you found

the International Still's Foundation website-it's excellent-let me know

if you need the web address. Oh, on the civil war-my great-whatever

grandfather was either the clerk or in charge of a black unit from IL. My

brother has his journal-very interesting reading-even talks about getting

ready for Lincoln to view the troops-really interesting. Please let me

know if I can help or answer any ?s -Ann Heath lotr56@...