Re: I could use some encouragement

January 30, 2006

Please try to hang in there. Long remissions happen...I had 2 of them

no....3 they lasted 9 years each . The first episodes of this thing were the

worst!!!! I am almost 50 now. I have 2 kids / pets/ and was a nurse and went

to

pharmacy school. When well I was motivated to exercise and stuff. Not perfect

a life by any means but it really can get better..much better...Hugs Liz NJ(

first episode in 1972 )

January 30, 2006

Hi, my name is Missy and my daughter, is six years old. She was diagnosed

with Systemic JRA when she was two. We've been on chemo for four years now. She

also gets Remicade I.V. every 8 weeks. She had a flare that lasted about a year

and a half to get it under any kind of control. She was on HIGH dose Prednisone

and tons of pain meds. So, I guess to cheer you up a little at least your son

has responded to some meds this fast. It took about 9 months for my Em to even

be able to walk. It took 13 days to diagnose her (when she was two) and they

were the longest 13 days of my life. She had progressed so fast that her immune

system was already attacking her lymph nodes and liver. Hopefully your son will

do great on the drug he's on. By the way I thought I had heard of all the

DMARDS, NSAIDS, and other drugs but I don't know what Medrol does. Is it a

steroid? Is it the same as ?Solumedrol IV? That's what she got in the hosp when

she was two. They never offered it as a home remedy

though. Does he have any side effects from the Medrol?

I can tell you though that even when you want to protect him, let him play

like his friends do. I try to let Em play on the playground like her friends and

stuff. It's hard because I know she may be in pain later if she jumps off

something high or falls or something. You know if he's responded this fast to

drugs there's still a chance it could go into permanent remission. How long

did it take to actually diagnose him? Was he sick for very long?

Missy

moonstruckmom92 wrote:

Hello all,

I am new to the group, just two weeks, and I think I am getting more

depressed as I read all your personal stories and some of the terrible

pain and discomfort some of you experience. As a parent of a teenager

newly diagnosed with this disease I read these postings with a sense

of panic as I wonder what kind of life is ahead for my son. I have to

be honest, it really scares me. He is doing really well on his high

dose of medrol, but I know that is what is keeping him this way. I

worry when we start to taper him off if he will have all these

symptoms and flares that you guys talk about. I know I have to be

positive, but I can't help but constantly worry about his future. He

seems " fine " with all of this, since he is back at school and feeling

relatively well. I don't let him read what I read because he tells me

he doesn't want to know. Maybe I shouldn't be reading either. My

nerves are shot and I fear the unknown. Is there any positive

feedback I can get???

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.

January 30, 2006

It can get better!!!!! I've been on Remicade since December and I

feel like a different person. The fatigue is getting better, I have

some pain but it is all manageable. It will seem overwhelming at

times as it does for all of us... but it's just like other things in

life, they never really stay the same for long. As my mom says " this

too shall pass " . I know that when I get really wrapped up in reading

stuff online it kind of sucks me into a void, maybe you need a break.

My downfall are the message boards at weight watchers, I need to lose

some serious weight and when I get into those boards I get lost

sometimes. Take a step back and look at the situation again... your

son has been diagnosed with a disease, he has gotten a diagnosis, the

meds appear to be working right now, and he seems to have a good

attitude from what you have written. We absolutely cannot be driven

by the fear that chronic diseases can create, we do not know what the

future holds, we can only hope it gets better instead of worse. We

can deal with what happens tomorrow, tomorrow. Today is what we have.

Good luck, don't get too depressed, go ahead and be angry, it may

make you feel better! :0)

Take Care,

Sam

January 30, 2006

I'm happy your here,but sorry your son is diagnosed with Stills.He might

fail reducing prednisone and he it might go smoothly the first time and he

can come off all meds completely.The later is the case for me,actually been

back doing Concrete work for about 2 years now and was diagnosed Oct

2002.Sure hope your sons Tapering goes smoothly I flared twice third time

was the charm.Take care and hope you stick around im sure you will find alot

of useful information. d.Canada

I could use some encouragement

> Hello all,

> I am new to the group, just two weeks, and I think I am getting more

> depressed as I read all your personal stories and some of the terrible

> pain and discomfort some of you experience. As a parent of a teenager

> newly diagnosed with this disease I read these postings with a sense

> of panic as I wonder what kind of life is ahead for my son. I have to

> be honest, it really scares me. He is doing really well on his high

> dose of medrol, but I know that is what is keeping him this way. I

> worry when we start to taper him off if he will have all these

> symptoms and flares that you guys talk about. I know I have to be

> positive, but I can't help but constantly worry about his future. He

> seems " fine " with all of this, since he is back at school and feeling

> relatively well. I don't let him read what I read because he tells me

> he doesn't want to know. Maybe I shouldn't be reading either. My

> nerves are shot and I fear the unknown. Is there any positive

> feedback I can get???

>

> 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.

>

January 31, 2006

Dear MoonstruckMom,

One thing that you learn about Still's disease is that it's unpredictable. As

the patient you learn to recognize the signs that a flare is coming and you can

do some things to make it better. Like sleep more for example. It's

frustrating at first to not know what's coming, but after a while you just stop

wasting energy thinking about it and just take it one day at a time.

You learn to know your limits very well but also to not let the disease take

over your life.

Are there times with terrible pain? Yes, sometimes. But in my experience

anyway, it is not constant and most of that has come when I am not under

treatment/ not taking anything to reduce the inflammation. There is a low level

of pain that is pretty constant but it's like a 2 on a 1-10 scale. This you get

used to and go about your business, you learn to live with it and after a while

just forget about it. What has helped me to deal with having Stills is trying

to live a life that's normal as possible- I got a part time job (15 hours per

week) that is working at a desk sitting down and can do that which is very

encouraging. Some people here have been able to work full time which is also a

great achievement. So I think that your son going back to school like normal is

great so long as he gets enough rest to do it. The prednisone does wonders for

this disease, I remember feeling normal for the first time in almost a year when

I was first put on it.

Have they talked of putting your son on any DMARDs yet, like Methotrexate?

Sometimes when the tapering is difficult they will add a second immunosupressant

and this will really help. I wouldn't worry about this yet since he just

started prednisone. But it is something to keep in mind. DMARDs also have side

effects but not nearly as many as Prednisone. They use prednisone to knock the

inflammation out quickly at the beginning and then usually add a DMARD to keep

it under control and taper off the prednisone(or Medrol).

There are a lot of positives in your son's case:

1) He was diagnosed very quickly because he had an acute attack of it- obvious

signs of inflammation and the blood work showed something (high WBCs for

example).

2) He is feeling better and responding well to the medicine.

3) You are looking out for him and learning all you can about this disease. (A

huge positive!)

4) There is a good chance that he could go into a complete remission because it

was caught so early.

The main thing to watch out for is making sure that he is really telling the

doctor how he feels at each visit. If there is a new symptom, or the pain is

worse or anything like that he needs to tell them. That would be my main

concern with a teenager is that they would blow off telling the doctor

everything that's going on. As for depression chronic illness can cause that

too, so be on the lookout for any signs of it in your son. This is very

treatable also.

There is no point worrying about what the disease is going to do, because you

just don't know. You just have to hope for the best and not waste too much

energy thinking about what the future hold.

Easier said than done - it took me about 3 years to get to the point where I

stopped worrying about it, most of the time.

Hope this helps a little,

-beth

January 31, 2006

Hey Lynn

I found your reply inspiring. Thank you.

Love

C2

> Hey moonstruckmom,

> You need to remember that those of us that are here posting

> frequently are

> the ones that are newly sick or the ones that have a chronic form

> of the

> disease or have other issues that make treatment hard. I know that

> I cannot

> have a lot of the treatments that others can get due to other health

> concerns and I am not the only one here like that.

>

> We have many people that have come and gone because they are

> functioning and

> well. Many people initially get very ill and then go into

> remission or are

> healed. My ebay mentor had this disease all thru High School and

> into her

> twenties, she was very ill and at that time all there were were

> steriods.

> She was told she should not get pregant as it would make her

> illness worse

> That was many years ago. He youngest of 2 boys will graduate from high

> school this year. She is in her 50's now and has not had any signs of

> disease since her mid twenties.

>

> In addition to that there are many people here who do not have time

> to post

> as they are having functional lives and don't have the time or

> energy left

> to post here. And speaking as someone who has this in a chronic

> form that

> seems to only get worse, well, I still have enough life to be here

> and I am

> not ready to give up yet, yes, we all have our days, but also note,

> that

> winter is hard on all of us. It is cold in most of the country and

> we don't

> do well with that, and chronic illness often leads to depression

> and that

> gets worse when it is dark and dreary.

>

> If you son needs support he might find a yahoo group for younger

> folks with

> Ra etc. to be helpful, he is always welcome to post here as we do

> have many

> younger members.

>

> The one thing I can tell you is this, please don't let our stories

> and pain

> scare you and give up the worrying, one thing I have learned is it

> is a

> total waste of time. Worrying never made anything better. It

> sounds like

> your son is doing well and has a good head on his shoulders. He

> will deal

> with whatever life tosses at him.

>

> Also, on the plus side let me tell you that for me personally, I do

> consider

> this disease a true blessing. Yes, it has its hard times etc. but I

> have

> changed so much as a person for the better. My proirities are very

> clear

> now and I think I really am in tune with what is important in life.

>

> If you would like some book recommendations to help let me know in the

> meantime check out this site for more insight.

> http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

>

> Lynn in WI

>

February 1, 2006

Hi there,

One thing you have to know about this group -- those in remissions

and feeling better are out and about and tend to not post to the

group often. Most of us who post to the group are trying to get more

information, are newly diagnosed, or are those who just can't seem to

get better. This is one end of the spectrum. But as you will see,

those in remission pop in from time to time, let us know they are

doing great and give us all hope that one day, that'll be us.

I'm guilty of that myself. When I feel better, I tend to be out and

about doing stuff - catching up on the things I couldn't do when I

wasn't feeling great.

So use this board as a tool to educate yourself on medications and

new tests and gain encouragement from this loving wonderful group of

people and verbalize your questions, thoughts, and fears. We are

here for you and you will see success stories as well.

Houston

February 1, 2006

Thanks . I realize that now and it makes sense. I hope you are doing

well.

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February 2, 2006

Hi Caroline

Thank you so much for your positive posting. My son is

22 has 6 months of Uni to go and up until 3 months ago

was also working 3 jobs. He has made it to work just a

few times since then and with Uni due to start after

summer break here in Australia in a few weeks he is

desperate to be able to get there and I am so worried

that he will not be able to! Your posting brought back

hope to me although he is positive and focused on

getting there (mind is strong the body weak!)

Thanks again and a list of the books you mentioned

would be fantastic!

Best wishes

vicki

__________________________________________________

February 3, 2006

I think the doses are reasonable..and I am so sorry for you and your

son..but wish him a remission sooner than soon. He may very well have a better

life

for having this disease...I know it sounds ridiculous...but guess what

happens when you feel welll...ambitious is an understatement...wings come out

and

you enjoy things so much more. I agree there has got to be a better way.

May his remission come quickly and stay there.. ..many hugs Liz NJ

February 3, 2006

((((((((((Sue))))))))))) as a person who has lived with this disease for

almost nine years now and a parent who has had a child recently diagnosed with

R.A., my heart goes out to you. You made me cry when I read your words. I

understand the desperation that you are feeling and the fear too.

Your son sounds like he is on pretty good doses of both pred and MTX. Some

of us have been on higher doses and some lower. As for myself, I've had plenty

of increases and decreases. Nowadays, I still fluctuate with my prednisone,

but I try to stay at 5 mg a day if at all possible. As for MTX, I'm on and

off of it. Living with this disease can be very hard in the beginning because

we can become so incapacitated, but there is light at the end of the tunnel.

Many of us fondly refer to SD as the " dragon " and he loves to rear his head at

the craziest times, but once you get used to him, he really isn't that

difficult to learn to live with.

Our lives do alter, but that doesn't mean that we cannot resume our lives

later on down the road. It's hard to say if your son will be able to resume his

scholastic activities in sports science, but he can always change majors.

Several of us, me included have had to change our professions entirely. I'm in

school again and making an entire career change because I can no longer do the

physical labor that I used to. It's been a lot of fun returning to school

and I have a lifestyle today that I never thought or even dreamed about having.

Just because we have the dragon it doesn't mean that our lives end. There

are some tough roads to go down, but there are also some times where we live

relatively normal and when those times happen, you will see that your son will

live like there's no tomorrow. Most of us I've noticed do the same thing. The

best way I can explain it is waiting for that other shoe to fall off. We

never know when and so we do ALL that we can while the good times last.

Each of us are different and while there maybe similarities, we all respond

differently to the multitude of drugs they give us. What I can tell you is

that most of us while we all have our down times and we get frustrated,

depressed, or angry, many of us hang on to that positive attitude that we will

conquer this disease. The dragon will not get us. We won't allow the dragon to

have

his way with us. It's all in attitude and it sounds like your son has come

to some kind of acceptance and he will not be defeated either.

I don't think his hair will fall out. Mine didn't. I did shed a little, but

never went bald and as I said I'm still a pretty frequent user of MTX. I would

be more concerned with the weight gain from the steroids than anything, but

this is temporary too. At the start of my disease I weighed 118 pounds and

went all the way up to 198 pounds. This adventure began for me in April of 1998

(actually longer, but this was when I was " formally " diagnosed) and today I

weigh all of 126 pounds and I'm 5' 6 " (thanks to osteoporosis. LOL) In my

prime I was 5' 9 " , but I've shrank a lot. I'll be 48 in November and I still

deal with daily joint swelling, but I also have long periods of remission where

everything was great. I forgot to mention that I also spent quite a few years

in a wheel chair and now I can walk and even jog a little bit. Prior to my

illness I was running 2 miles a day. I still can't run like I used to, but

then I'm also quite a bit older now too. Hey, I can walk on flat ground though

and that's something that I couldn't do and I had to depend on a scooter and a

wheel chair to get me around. I've been back to driving for almost four

years now too! There have been a heck of a lot of ups and downs, but I wouldn't

trade any of the experiences for anything. I've learned so much that I am

actually grateful for the dragon!

I hope that I haven't bored you. Your email touched me and I just wanted to

let you know that I'm really glad that you shared with us what was going on

and to please continue to do so. Pull up a chair and feel free to email

anything that you feel. You will find in this family someone has experienced

what

you are going through and if nothing else, we can console you and give you

comfort. Encourage your son to post too. If it had not been for this list, I

probably would have gone out of my mind. I'm pleased to meet you despite the

circumstances and look forward to reading more of your posts and hopefully, your

son's too. Hang in there Mom, it gets better. Your son sounds very resilient

and he will get a handle on the dragon and go on to be the young man that he

is going to be. Try not to stress, he's got a handle on his life. Just be

there for him and we will be there for both of you! Take care and thanks for

letting me share.

Much love,

Terry

February 3, 2006

Hi there,

I am new to the group too, this is the first time iv posted. I also have a

teenage son, diagnosed with stills just before Christmas, I am so scared for his

future, I cant take it all in, it seems so unfair. He seems to be coping with it

better than me, although he has been unable to continue with his studies, he was

at uni studying sports science. He has been put on prednisone 30mg a day and

methotrexate 10mg a week. Can anyone say if these doses are average, I am also

scared that he will loose his hair? Is this a possibility on this dose, I dont

know what else to say just now, but i could really do with some encouragement if

there is any out there.

Sue xx