Re:

April 22, 2005

I did see the email about Stills Vegas conference,but i think Vegas is out

for me this year unfortunatly.As much as I would love to see everyone new

and old,im tryin to save up money.I was supposed to be moved out already but

now my parents want me to buy in on a house with a basement suite setup(I

figure this way even if the damned Stills acts up it will be a decent

situation).As always there is a possibility though,if I do it will probally

be a last minute decision though,take care. d.Canada ----- Original

Message -----

To: <Stillsdisease >

Sent: Thursday, April 21, 2005 6:53 PM

Subject:

>

> Hey , it's good to hear from you again, it's been so long! Have you

> heard about the Still's conference coming up in October (9,10,11th)...it's

> in VEGAS!. So what do you think....is it a possibility?

>

> Take care,

>

> Marilyn

>

> ----Original Message Follows----

>

> Hello everyone!!,old and new.I have been reading mail but didnt realize

> they

> were bouncing,I think or hope its been fixed .I have been great even

> though work has been crazy,today is a day off pure joy lol.I see we have

> alot new faces around and would like to welcome you all to the Island.Well

> the Sun is out and im off to hit my little white ball ,take care all.

> d.Canada

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

> to replace the services of a trained health professional or to be a

> substitute for medical advice of physicians and/or other health care

> professionals. The International Still's Disease Foundation is not engaged

> in rendering medical or professional medical services. You should consult

> your physician on specific medical questions, particularly in matters

> requiring diagnosis or medical attention. The International Still's

> Disease Foundation makes no representations or warranties with respect to

> any treatment, action, application, medication or preparation by any

> person following the information offered or provided within this support

> form.

>

> ion by any person following the information offered or provided within

> this support form.

>

May 26, 2005

Hi Joan,

Welcome to the group. It's nice to see another Englander in here although

I'm sorry you need to join us. I've had Stills since the age of 3, but my

last flare was when I was 15, that was until I flared again 6 years ago at

the age of 30. I'm sure you'll find lots of helpful information here and

I'm happy to share stories with you.

keep well,

Graham (36)

West Sussex, UK

At 17:45 26/05/2005, you wrote:

>Subject: Introducing myself as a new member.

>

>Hello

>

>My name is Joan I was born on 26 March 1942 making me 63 years old. I

>am English and have lived all my adult life in England. I currently live in

>the lovely County of Surrey approximately 18 miles from the centre of London

>but surrounded by lovely countryside.

>

>I look forward to some contact via my E mail address:-

>georgeandjoan@...

>

>Regards

>

>Joan

May 26, 2005

Hello Joan,

You are not alone! I also live in Surrey (Surbiton) and was born in 1942. I

was diagnosed with Still's 6 years ago having suffered the symptoms on and off

all my life. My last flare was in June last year and since then I have been

quite well although I still get rashes most evenings with the usual sore throat,

swollen painful joints etc.. I'm not taking any medication at present but find

Pred beneficial when having a flare.

Glad to hear you are reasonably well at present and hope you stay 'flare free'.

I attend Kingston Hospital out patients every 6 months (when they don't cancel

my appointment!)

18 miles from London, in Surrey, you must be quite local to myself and husband

Doug.

We have found this group really helpful and supportive - I am sure you will too.

Best wishes

Carole (UK)

Introducing myself as a new member.

Hello

My name is Joan I was born on 26 March 1942 making me 63 years old. I

am English and have lived all my adult life in England. I currently live in

the lovely County of Surrey approximately 18 miles from the centre of London

but surrounded by lovely countryside.

Although I did not know it at the time I contracted AOSD in November 2001.

I became ill with flu-like symptoms, then a very dry cough and developed a

rash all over my body and was generally weak. The weakness intensified

until I was unable to stand without assistance.

I was admitted to my local hospital on 6 December 2001 where I was diagnosed

with an unidentified viral infection due to high temperature and high white

blood cell count. Numerous blood samples were taken but no particular

infection could be identified.

During the next 3 weeks whilst investigations were taking place, my general

condition deteriorated very seriously, at this stage I could not swallow

food or water. I was transferred as an emergency to a London hospital with

a ward specialising in unknown diseases. For the next 2 1/2 months

specialist consultants carried out all sorts of tests while they persued

various possible causes which included Multiple Sclorosis and Melanoma.

During this time I was fed by drip then tube through my nose and finally by

a plug through my stomach.

Finally in early March 2002 all my symptoms disappeared I became reasonably

well and was discharged from hospital without a diagnosis. I could hardly

walk at this stage, but within 6 weeks I was walking about 1 mile a day and

eating normally again.

Suddenly in May 2002 all my original symptons including the rash re-appeared

I was sent back to the same hospital for further tests.

Finally a break-through came when a Rheumatologist was called in to treat my

badly swollen knees. He was the first person to suspect stills although he

said he had not seen it in an adult of my age before. I was prescribed very

high levels of Prednisolone (starting at 50mg) which started to bring my

sysmptons under some control.

For the past 2 years I have been treated as an out-patient at the

Rheumatology Department of the same London hospital. My basic medication

has been mainly daily doses of 15mg Prednisolone plus weekly doses of 15mg

Methotraxate. Recently the weekly 15mg Methotraxate has been replaced by

daily doses of Leflunomide

I have joined your stills group to learn from the experience of others. I

also hope that contact with fellow sufferers will help dispel my feeling of

total isolation with this disease. Until now I have had no contact with

anyone who has personal or in depth knowledge of AOSD.

I look forward to some contact via my E mail address:-

georgeandjoan@...

Regards

Joan

May 26, 2005

Joan,

Hi, welcome to the group. Please know that you are not alone by any means

of the imagination. I was dx'd in 2004 with stills but suffered for many

years. I live in Southern land.

Look forward to your emails.

Tracilyn

May 26, 2005

Hi Joan,

Welcome to the Stills Disease group! I'm sorry you've been diagnosed with

this disease, but am glad you found our group.

My name is Barbara Gardner, age 46. I became sick at age 29, but had a

variety of symptoms years prior to that. Ask all the questions you want. This

group includes a wide variety of well informed, helpful people. As a matter of

fact, we have another member in Surrey! I look forward to hearing more from

you.

Much love,

Barbara

Subject: Introducing myself as a new member.

Hello

My name is Joan I was born on 26 March 1942 making me 63 years old.

May 27, 2005

Hello Joan welcome to the group.I'm 34 diagnosed with stills in

2002,similar with you mine was finally confirmed as Stills when my now Rhumy

came to have a look at really swollen knees basketballs more like it

.Queen has been in Canada the past week,I live in Province of

Alberta the royals are here to help celebrate our centennial,smile and wave

lol.My stills is in remission currently,I hope the same for you take care.

d.Canada Introducing myself as a new member.

>

> Hello

>

> My name is Joan I was born on 26 March 1942 making me 63 years old.

> I

> am English and have lived all my adult life in England. I currently live

> in

> the lovely County of Surrey approximately 18 miles from the centre of

> London

> but surrounded by lovely countryside.

>

> Although I did not know it at the time I contracted AOSD in November 2001.

> I became ill with flu-like symptoms, then a very dry cough and developed a

> rash all over my body and was generally weak. The weakness intensified

> until I was unable to stand without assistance.

>

> I was admitted to my local hospital on 6 December 2001 where I was

> diagnosed

> with an unidentified viral infection due to high temperature and high

> white

> blood cell count. Numerous blood samples were taken but no particular

> infection could be identified.

>

> During the next 3 weeks whilst investigations were taking place, my

> general

> condition deteriorated very seriously, at this stage I could not swallow

> food or water. I was transferred as an emergency to a London hospital

> with

> a ward specialising in unknown diseases. For the next 2 1/2 months

> specialist consultants carried out all sorts of tests while they persued

> various possible causes which included Multiple Sclorosis and Melanoma.

> During this time I was fed by drip then tube through my nose and finally

> by

> a plug through my stomach.

>

> Finally in early March 2002 all my symptoms disappeared I became

> reasonably

> well and was discharged from hospital without a diagnosis. I could hardly

> walk at this stage, but within 6 weeks I was walking about 1 mile a day

> and

> eating normally again.

>

> Suddenly in May 2002 all my original symptons including the rash

> re-appeared

> I was sent back to the same hospital for further tests.

>

> Finally a break-through came when a Rheumatologist was called in to treat

> my

> badly swollen knees. He was the first person to suspect stills although

> he

> said he had not seen it in an adult of my age before. I was prescribed

> very

> high levels of Prednisolone (starting at 50mg) which started to bring my

> sysmptons under some control.

>

> For the past 2 years I have been treated as an out-patient at the

> Rheumatology Department of the same London hospital. My basic medication

> has been mainly daily doses of 15mg Prednisolone plus weekly doses of 15mg

> Methotraxate. Recently the weekly 15mg Methotraxate has been replaced by

> daily doses of Leflunomide

>

> I have joined your stills group to learn from the experience of others. I

> also hope that contact with fellow sufferers will help dispel my feeling

> of

> total isolation with this disease. Until now I have had no contact with

> anyone who has personal or in depth knowledge of AOSD.

>

> I look forward to some contact via my E mail address:-

> georgeandjoan@...

>

> Regards

>

> Joan

>

May 30, 2005

HI Joan........My name is Carey. I was diagnosed with AOSD in March of 2004.

I'm 31 and live in New Jersey.

About your MTX dosage. I take 10mgs once a week on Wednesdays. By pill form.

And this has helped me. I'm sure there are other members that take a higher

dosage than me. MTX is also used a cancer drug. And I think they give it in

higher dosages to Cancer patients.

Also about your fatigue issues......When I first joined this awesome,

supportive group of people, Someone sent me a copy of " the Spoon Theory " . Here

is

the link _http://www.butyoudontlooksick.com/spoons.htm_

(http://www.butyoudontlooksick.com/spoons.htm)

Please read it. It helped me understand that I cant do it all at once like I

used too. It's also something good to send out to your Family members and

friends to help them understand what you go through everyday on a daily basis. I

hope this helps you a bit. And Welcome!

Take Care,

Carey

May 30, 2005

Hey Joan;

First off, welcome to our " family " . You will find much love, encouragement,

hope, help, knowledge and wisdom here. I am Larry. Diagnosed Feb. of this

year. I am 45 yo, married with 4 children and 5 dogs. I live in North

Carolina, USA.

Like you, fatigue is a burdensome issue. I have read much here about pacing.

doing an activity, resting, activity, resting, etc. Main thing is to listen to

your body. Let it be your guide. As frustrating as this is, that really is the

best way. I have found that the harder I push, Still's pushes back harder. I

was on 20mg pill form of MTX once per week. I took myself off of it about two

weeks ago due do adverse side effects. AND I have found a new Rheumatologist.

Unfortunately, I have to be my own advocate and knowledgable medically.

Anyway, again welcome! Hang in there and you said it best........most days I

just get through the best I can.

God Bless!!!

Larry B.

and Joan wrote:

Hello to you all

I would first of all like to thank you for making me feel welcome as a new

member, particularly those of you who gave me a personal reply.

I do have a couple of questions I would like your help with if possible -

does anyone know what the maximum dose of Mtx is?

Secondly I wondered how other members of the group cope with the extreme

fatigue that seems to be a symptom of Stills as when I get up in the

morning, maybe make the beds, have a shower come down and wash up I then

have no energy whatsoever and just get through the day the best way I can.

I would be very interested in knowing if any members could give me any tips

or advice with this problem.

As using a computer is a new venture for me please bear with me for any

errors I make.

Thanks for listening

Joan

georgeandjoan@...

May 30, 2005

Dear Joan,

The fatigue difficult, especially if you're used to a more active life. I

was at one time. Every one of my doctors have said to indulge the fatigue,

don't fight it. If you feel you need to rest, then rest or sleep. Medication

and rest is what helps your body heal. If you fight it or push yourself too

hard, you'll suffer the consequences. After you get up and take care of

yourself (breakfast, medication, shower), take a rest. Find your favorite place

and read a book or nap. I've had flares where I did just that, only after

taking care of myself, I fell asleep for the rest of the day! My husband would

come home, he would make dinner, I'd eat, do a load of laundry (or something

similar) and go to bed again. Some days I'd sleep 20 hours. I'm betting it

would have been worse if the choice had been to fight it and get things done.

My husband is very understanding. So are our kids. It is important they be

understanding have have knowledge about your disease and medications.

Methotrexate didn't work for me. I think the dosing is individualized, and

20 mgs orally is usually considered the maximum dose, but the best person to ask

is your Rheumatologist. A lot of people have problems with oral mtx, but find

the injections work well. I was on oral mtx for 13 months with no improvement.

That was before Enbrel, Humira, Kineret, and some other drugs were approved.

After I started Enbrel, it took about 2 months to improve. My doctor almost

made me stop because so many others needed it. Years later and I'm still on

Enbrel. Everyone's experience with a medication is different. You pay your

doctor for appointments and they treat and prescribe for you. They should be

available to you by phone, if needed. Don't feel guilty for calling.

I hope you feel better soon!

Much love,

Barbara

Secondly I wondered how other members of the group cope with the extreme

fatigue that seems to be a symptom of Stills as when I get up in the

morning, maybe make the beds, have a shower come down and wash up I then

have no energy whatsoever and just get through the day the best way I can.

I would be very interested in knowing if any members could give me any tips

or advice with this problem.

May 31, 2005

Im sorry your so bad off right now Joan I dont know the Max dose of Mtx.I

can tell you if you just started they will slowly increase the drug till

hopfully they see results At one time I was 8 2.5 mg pills so myself 20

mgs,luckily I have been off of it for six months,at the time it did help me

decrease prednisone.Stairs I can only imagine are close to impossible,I hope

you get a Kickstart,can you maybe possibly move your sleeping to downstairs?

I also remember having a high Couch helped also lees stress on the getting

back up part,take care. d.Canada

> Hello to you all

>

> I would first of all like to thank you for making me feel welcome as a new

> member, particularly those of you who gave me a personal reply.

>

> I do have a couple of questions I would like your help with if possible -

> does anyone know what the maximum dose of Mtx is?

>

> Secondly I wondered how other members of the group cope with the extreme

> fatigue that seems to be a symptom of Stills as when I get up in the

> morning, maybe make the beds, have a shower come down and wash up I then

> have no energy whatsoever and just get through the day the best way I can.

> I would be very interested in knowing if any members could give me any

> tips

> or advice with this problem.

>

> As using a computer is a new venture for me please bear with me for any

> errors I make.

>

> Thanks for listening

>

> Joan

>

> georgeandjoan@...

>

May 31, 2005

Hi Joan,

I was on MTX for around 18 months, firstly by pill up to a dose of 22.5mg,

then by injection. I have to say that my experience with MTX was not good

in that it made me feel very nauseous and incredibly fatigued beyond

description and in excess of anything else I have experienced. The side

effects from the injection were *much* less. But in either case I can't

say that the MTX had any beneficial effects for me.

I had to stop taking it for a couple of weeks so that I could recover from

a nasty stomach bug and during that time I felt *so* much better that I

refused to restart it again. That was the turning point for me as my blood

results rapidly returned to " normal " . I actually feel that the MTX may

have prolonged things for me but this is purely anecdotal and could well be

coincidental. I also started taking plaquenil as a replacement for the MTX

so this may have helped but again I'm not sure that it really did.

Fatigue continues to be a problem for me as I always used to be very

active. I now have to pace myself, which is frustrating, but considering

the alternative it's a small price to pay. My fatigue is now quite

manageable and I can get thru most days ok, but when I get a cold or a

throat infection it really takes it out of me.

The only advice I can give is to reprioritise everything - some things just

aren't important and don't need doing (in my case this is the garden!). If

you're gonna have a busy day then plan for it and allow yourself a day or

two to recover afterwards. Check out the " spoons theory " , I'm sure someone

here can give you the link. :-)

best wishes,

Graham (36)

West Sussex, UK

> and Joan wrote:

>Hello to you all

>

>I would first of all like to thank you for making me feel welcome as a new

>member, particularly those of you who gave me a personal reply.

>

>I do have a couple of questions I would like your help with if possible -

>does anyone know what the maximum dose of Mtx is?

>

>Secondly I wondered how other members of the group cope with the extreme

>fatigue that seems to be a symptom of Stills as when I get up in the

>morning, maybe make the beds, have a shower come down and wash up I then

>have no energy whatsoever and just get through the day the best way I can.

>I would be very interested in knowing if any members could give me any tips

>or advice with this problem.

>

>As using a computer is a new venture for me please bear with me for any

>errors I make.

>

>Thanks for listening

>

>Joan

>

>georgeandjoan@...

>

June 25, 2005

Have a good time Joan,

I use acrylics on my folk art cat sculptures and love working with them. I

preferred oils for paintings as it is easy to fix mistakes but I know the

one stroke painting is a blast with acrylics!! Enjoy your class, I have

found working with art very therapeutic.

Lynn

--

I was interested in Oliver's E mail in which he says he is interested

in acrylic painting. My husband and I are going on a weekend acrylic

painting course in a couple of weeks time. It will be our first effort and

we are looking forward to it as long as I can keep the paint on the paper as

I am quite shaky at the moment but I am so keen to do it.

Hope you are all having a good day

joan smith

georgeandjoan@...

July 20, 2005

Hi ,

It's good to hear your son is doing so well. I know others in the group that

may want to have kids will feel reassured.

As for the sweating, prednisone does cause one to feel hot ... hungry,

cranky, bloated and on and on. I think we can sweat due to fevers, too. I've

had episodes of bad sweating at night. I think the fevers are spiked at night,

then they normalize ... sometimes. There are times I have a fever all day long.

I had long hair for years. My Neurologist told me to strongly consider

cutting it. I didn't like that idea, but my hair is very fine, but there's a

lot of it so it takes a long time to dry. Because of the damage in my back he

didn't want me holding the blow dryer. I finally cut it and don't blow dry it

often. It's a lot easier. Of course, if I was younger I'm not so sure it would

have been considered.

Keep the air running, we've had a heat wave!

Much love,

Barbara

July 24, 2005

Thank you, Lynn. Thank you to all of my Still's friends! Stay cool and

enjoy your weekend. Monday comes soon enough!

Hugs and hopes for comfort and relaxation,

Rose

--

Happy Birthday !!

Lynn

July 24, 2005

So glad your birthday was special Jules!!! I am wishing you better health this

year and lots of love. Melt

July 25, 2005

Happy Belated Birthday ! Hope you had a wonderful day!

Hugs,

Carey

July 25, 2005

Happy Birthday and Many Many more glorious returns . And painless day to

go along with all your best wishes come true.

Tracilyn Brown

August 1, 2005

Is anyone else's Still's Disease in their tendons besides the joints and

cartilage? My new Still's disease fun is every morning (or when I don't use my

hands to often my right hand the fingers get locked down. Literally my ring

finger and middle finger stay down and I can do whatever I want with the other

fingers. I actually have to use my other hand to straighten them out. Does any

one else have this phenomenon? My Rheumy said its because the Still's has moved

into those Tendon's and is still moving. He's planning on putting me on Rituxan.

(It's the same strength they give non-Hodgkin's lymphoma patients) actually it

use to be twice the dose of the cancer patients, but a new study showed the same

dose seems to be helping people with severe arthritic conditions.

Love and kisses to all,

Lara in NJ

Been in a wicked flare hope everyone else is doing better than I am.

Happy Birthday to anyone I missed and welcome to all the Newbies sorry you have

Still's but thank God you found support this great.

Re: A simple request? Add me to the list.

I added you to the list Darv. I'll keep adding people til it slows way

down, and then I'll send it to everyone. about your other post, I had (and

still

have) the night sweats really bad, and I had finger/wrist joint pain pretty

severely too. At times I couldn't even pick up a pencil it hurt so bad! My

guess is, it's symptoms, but then, I'm only guessing. I can feel your pain

as we speak. Hope you feel better real soon.

Tammi

August 1, 2005

Yes, Lara;

I have had my disease in my tendons as well. Stills can affect even the tissue,

muscles, tendons and joints, cartilage as well as internal organs. Ask your

doctor about trying some wax treatments. Good luck dear and see if you can find

some smiles today, Melt

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

From: anthony johnson

Is anyone else's Still's Disease in their tendons besides the joints and

cartilage?

August 3, 2005

idmeeoh54@... wrote: I'm interested in learning what other meds

you have been on b/c i've been on I think almost everything and my Dr is talking

about Rituxan also as my next option. I'd like to talk more about it.

Thanks,

anthony johnson wrote: