Re: Introduction and Questions

[Guest guest]

Hi Jody:

My name is Bob and I am the Scty/Treas of the Stills Disease

Foundation. We have one brochure that is printed about Stills and it is

loaded with information for those people who don't have the slightest idea

what Stills is? Our main reason for being, is to get as much information as

possible out to the people who need it the most starting with the Stills

patients and the DOCTORs, most who have never heard of Stills, then

disbelieving relatives and friends. I would like to send you some of these

brochures in the hopes that you would pass them out to every Doctor,

Relative and Friend you come in contact with and especially any ER that you

happen to be near. They cost you nothing and even the postage is paid. If

you will send me your postal address I will send You some of them. Send it

to my personal e-mail address which is oldgoat378@..., Take care now

and I hate to say welcome to the Family but you are in the right place. I'm

sure others will contact you shortly.

" WE WILL WIN "

Love Ya'll

" NEVER FIGHT FAIR "

Bob & Carole

Dad & Mom

Panama City, FL

Please visit the International Stills Disease Foundation Inc Web Site at

www.stillsdisease.org/. Please make all tax deductible donations to the all

volunteer, International Stills Disease Foundation Inc .,1123 S. Kimbrel Ave.

Panama City, FL 32404. Thanks!

[Guest guest]

Hi Jody,

I am . I am a 35 year old nursing student in western NC. I am amrried

with a three year old son. I was diagnosed with AOSD in Sept 1996. I don't

really

have any wonderful advice to give you. I can say that for me and several

others, the first flare up is the worst. I actually had an almost 8 year

remission

without taking anything. So, I'm just saying that for many of us, it does get

better. I am taking 7 mg pred daily and tramadol for pain. It is working

pretty well. I know it is hard for family members to deal with this disease. You

never know what to expect. As I have explained to my husband, you have to learn

to adjust to what I can do. Some days are better than others. Hang in there.

The support of his family can help your husband so much.

</HTML>

[Guest guest]

Jody, I am glad you found the site. Although every case is different, someone

usually has had a similar experience and can provide direction to the proper

professionals. Everyone understands the complexities and is very supportive.....

I hope things will improve soon.

Jody Klein wrote: Hello. My name is Jody and my

husband of 12 years (we just celebrated 12 years on Sunday), Mark, was diagnosed

in Sep with SD. He is an architect/project manager at UM and I am a stay-at-home

mom. We are 36 and have 3 wonderful children...a girl (age 6 1/2) and 2 boys

(ages 3 and 14 months). Here is our story...

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[Guest guest]

Jody,

God love your heart! I am so sorry that your husband has been dx'd w/Still's

but am very glad you found us. There's no better place to ask questions and

vent!

I was on Remicade for a couple of years and it helped until the end of that

two year period. And MTX was given as well. I am 39 and have had symptoms

since I was a young teen but didn't have a real flare up until I was 18.

But I can tell you that I have had some periods of remission. It was a long

road to me getting diagnosed (8 years) but once I had a name to the disease,

found this group and educated myself, things began to seem a little more

tolerable.

In your case, being the spouse of the one who is sick, I have to say I

undsterstand somewhat b/c even though I am the one with Still's Disease, my

husband has health issues that are very frustrating, too. Meaning, I know what

it's like to see your big strong husband go from the picture of health to being

helpless, totally reliant upon you. It's very hard and my heart goes out to

both of you.

As far as the kids, for six years, my kids only had me to look to. And when I

went through times of flare ups, they adjusted well, helping when they could.

But they were scared at first. My daughter was only 5 when I hit a bad patch

and the school kept calling me and telling me to come see her b/c she would cry

and tell them she was afraid her mommy would be in the hospital when she got off

the bus! Heartbreaking...!

Through the years, I have been on various meds. I don't like taking the

drugs, but I realized the alternative wasn't an option. Just hang in there and

know we are here. A lot of us have had various experiences with this, so ask

away. I was so scared when I found out what I had, especially when they told me

it was rare, blah, blah. But when I found this group, I felt as if I got just a

tad bit stronger, knowing that there are others who deal with it, too, and could

help me make sense of things.

My prayers are with you and your husband and children.

Gail (KY)

Jody Klein wrote:

Hello. My name is Jody and my husband of 12 years (we just celebrated

12 years on Sunday), Mark, was diagnosed in Sep with SD. He is an

architect/project manager at UM and I am a stay-at-home mom. We are 36 and have

3 wonderful children...a girl (age 6 1/2) and 2 boys (ages 3 and 14 months).

Here is our story...

Mid-August: Mark was diagnosed (as was the entire family including the 9 month

old baby which is unusual) with Strep Throat...only the second time in his life

he has had it. Ten days later, his antibiotic (Keflex) course was done, but he

complained of a sore throat. It wasn't the same sore throat that he had 10 days

prior, but a sore throat nonetheless. It was Thursday, August 9th, and we were

packing the car to go camping with my whole family (family reunion weekend). We

said to ourselves that day, he will just need to rest once we get up north and

get set up...he is probably coming down with something. Well, the next day was

wonderful...Friday, August 10th is referred to by our 6 year old daughter as the

last day we were happy as a family. Yes, I'm crying while writing this. Anyway,

we went swimming and had a campfire and all was well. The next morning, Sat,

Mark woke up and just didn't feel well. He couldn't put his finger on it, but

just

felt icky. Then, his R knee started hurting, then swelling. By noon, he could

barely walk. By 5, he looked grey and couldn't move his right knee. My dad took

him to the ER. They thought he had a staff infection. Drained his knee and put

him on IV antibiotics and wanted to admit him. He, however, refused to be

admitted and came back to the campsite with the IV still in his arm waiting for

another dose Sun morning. That night, it rained--this is off topic, but too

funny, I must add something to smile :-). Anyway, we were flooded out of our

tent. Yep, 2 inches of water ended up seeping in. The kids were soaked, even the

baby in his Pack-n-Play was getting dripped on. Thankfully, my cousin had her

camper next door to us and had been watching for our light to turn on. So, she

and I grabbed the kids while Mark tried to get out of the tent and across the

mud in the pouring rain on crutches! Oh, and, by the way, that was my

birthday...Sun, Aug 12.

So, at 4 am...we had 5 adults and 5 young kids awake in a camper in the rain. We

decided to get to the ER and go home a day early to get Mark back to Ann Arbor

to his normal doctor/hospital. We got to the ER and they announced that the

fluid from his knee was clear of infection, gave him more IV antibiotics just in

case and sent us home. The next day, Mark went to see his PCP. He diagnosed him

with Serum Sickness (basically a reaction to the Keflex) and put him on pred and

said he would feel much better in 24 hours. So, Mark went to work on Tues

morning. Didn't make it past lunch and was in absolute tears by dinner. This,

from a guy with such a high pain tolerance that he built a deck and other

projects with a torn rotator cuff because it wasn't convenient to have the

surgery (project at work, then I was pregnant and he waited till the baby was 3

months old...had the surgery...and flusehd down most of his meds because he just

doesn't like to take

them). So, for him to be in tears from the pain said a lot. Me, I'm a wimp :-).

I took him to UM ER, they admitted him. Diagnosed him with Rheumatic Fever

(remember the Strep). He was there for 10 days with high fevers spiking 1-2

times a day, said they dissappeared because of the tylenol, and in such agony.

He was so out of it, too. He hardly remembers it still. Kept waking to mumble

about stuff then sleeping again. They sent him home on heavy aspirin doses and

narcotics. He wasn't home 24 hours before I had to get him back again...this

time I didn't think I was going to get him out of the house, but he eventually

scooted on his tush to the stairs and down. By this time, he cannot even use

crutches...it has spread to include both knees, both ankles, both middle fingers

and the L wrist. He passed out twice. The first time we assumed it was from the

pain, but after the 2nd, I took him back to the ER. Now, he is diagnosed with

Diabetes

Insipidus (the pituitary gland isn't functioning and is telling his kidneys to

work overtime so he was dehydrated and passing out). BTW, according to the RD at

UM, they have only found 1 other occurence of SD effecting the pituitary gland

(in Spain...they had the records translated to study). So, he is back in UM for

another 9 days. By this time, Sep 1 rolls around and the hospital teams switch.

He is now being seen by the Chief of R, Dr. Fox, who has been following his case

all along because he was their Mystery Patient. They were having lunches with

other teams daily to try to figure him out. Dr. Fox comes in the first day he is

on-call and says...SD. Still need to rule other things out, but he believes it

is SD. So, they put him on Kineret and pred. He seemed to get better, then they

discharged him before our insurance approved Kineret. They sent him home without

it and he was back worse than ever 2 days later. Mark still thinks that this

was the flare-up that sent him over the edge. He was put back on Kineret (after

a lengthy ordeal at the hospital but that's for another time) and they did not

release him until they got approval for Kineret. Dr. Fox literally called the

insurance co on the phone and yelled at them...his nurse told us all about it:-)

Thank you, Dr. Fox. So, he came home Sep 19 and has yet to go back to work. He

was taking 60mg pred qd, 1 shot Kineret qd, 40mg Oxycodone (ext release) bid,

20mg Oxycodone (fast acting) q4 hours PRN, and morphine PRN. The Kineret is

blocking the fevers. It had started to spread to his L elbow and L hip in the

hospital, but backed off after starting Kineret and hasn't reappeared there.

However, with his last flare-up, it spread to his 2nd R toe. That was just

before Thanksgiving. This past week has been awful, but better than the last

time it was awful. His current meds are...Kineret qd, 40mg Oxy (Ext Rel) bid,

20mg Oxy (fast acting)

q4 hours PRN (and he needs it again...he had tapered off to morning only or not

at all), 15mg pred, 17.5mg MTX, fosomax, bactrim, folic acid. And, he is taking

whole food supplements that our Chiropractor has muscle-tested him for. Whenever

he stops taking the holistic supplements, he gets worse. He stopped again almost

2 weeks ago and Christmas has been awful. But, he has also done more than he

should this past week. He started taking his supplements again today, so we'll

see. He also started tyring the Migun bed last week and that seemed to help, but

hasn't done it since Dec 21. So, maybe that effects him, too.

Okay, I know I've had a lot to say, but no one else seems to understand. His

mother just says, it's arthritis, he'll be fine. Well, he's not fine. He can

hardly move. He is 36 years old and uses a wheelchair to go anyplace that

walking is required. He sleeps all the time and his kids are asking if Daddy is

going to die. The wheelchair we can all handle. It's the pain and fevers (the

Kineret blocks the temp spike, but he still feels feverish), the swelling, the

inability to go somewhere fun with his kids because if he overdoes it, he

flares. This is not him being fine! He is good at getting through stuff and

paying the price later, but this is no way to live. For him or for his kids. Or

for me. I am getting very worn down. It's the ups and downs that do me in. I

just don't know what to expect. It seems no one does. So, I know that no one can

predict what will happen for us, but can anyone give me hope. Might it go away?

Might they figure

out how to help him live with it?

Thanks for letting me tell our story and vent. I really appreciate just being

able to do that. And, now I need some advice, please. At his last dr. appt, his

RD discussed the following option with us. At first, he said he would strongly

advise it since he is not happy with Mark's progress on Kineret. But, then he

actually examined him and felt that we could wait until Jan 15 (next appt) to

discuss it further since Mark actually seemed to improve over the last 3 weeks.

But, now with him doing so much worse and the swelling increasing in his feet,

I'm thinking of calling him Jan 2. This is the option...drop Kineret, start

Remicade. Has anyone tried this? I saw an article on the website about Remicade

being successful with SD, but wanted to hear from you.

Ideally, Mark would like to get off of the pred and MTX (it knocks him out for 2

days after), but his RD says he has to stay on MTX with Remicade.

Okay, I guess that's enough info overload right now. I'm looking forward to

hearing from all of you!

Thanks,

Jody

__________________________________________________________

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http://www.yahoo.com/r/hs

[Guest guest]

Dear Jody and Mark,

My nickname here is , silly yes, but ya gotta have some fun. Let me tell

you just a bit of my history please and let you know I read and felt every word

of yours.

I was diagagnosed at 19, thirty years ago. I had a baby girl that was 2 and a

half years old. My onset was as major as Marks. I was very fortunate I know

today to have been given one of the most educated young doctors available in the

San Diego area of Southern California, just out of med. school that diagnosed me

within a couple months of onset, as soon as I was given to him as a patient. I

was treated with 60mg of Prednisone a day and the strongest medications of that

time available and still the first few years were very bad and I was very sick

with every classic Still's symptom. With that said, it did get better for me.

Each year got better and better. I learned on my own, with therapy, surgery,

doctors advise and plain old fashioned trial and error just as Mark is, what was

too much and too little activity to survive, without too much damage to my body.

I met one person besides my doctors that knew what Stills was and one person

that actually had Stills in 1997 until I found this group in 2002. My daughter

grew up a very compasionate woman. She's fine. A wonderful mother of two today

although she is a bit of a worrier as I am.

The most wonderful part of this is that I have taken MTX with Remicade and it

was ok for me but I wasn't nearly as bad as onset when it came out so didn't

have to be on it long when my doctor tried it. I was lucky enough not ever to

have had to go back on steroids over the years. Sadly that's not always the

case for some of my friends. I've had three joint replacements but today I am

in remission from active symptoms and have been for the last couple of years!

And there have been many good years these past 20.

The next I wanted to share is a bit of understanding of your feelings I think.

It's as I typed to a friend and member today. I think in many ways it may be

the harder side of illness to deal with. My reasoning has come because of my

husbands diagnoses this year of degenerative arthritis in his lower spine and

damage not fully diagnosed to his rotator cuff as well. He has been in total

denial. I am so frustrated because I love him so much and have not a bit of

control to help, manage, fix it, or change it for him. I can talk till I'm blue

in the face. I can do some things for him. I can give him my pain medication

when he runs out of his because he does too much and won't stop. I can totally

relate and say I truly understand what's happening to him emotionally because

I've lived it for thirty years but I am ultimately helpless to take it from him

because I cannot control it as I would if it were myself and I have had the

thirty years behind me.

My offer to you is add my address to your book. Write to any of us any time

personally or to the group and we are always happy to support you and help in

any way we know how. We truly understand and live it day to day.

Best regards and looking forward to knowing you better,

[Guest guest]

Welcome Jody and Mark:

all I can say is wow almost like reading my story. sorry your dealing with this

and I do mean all of you. I have had this wonderful thing now for about 7 or so

years. my kids asked the same as yours are and I to only slept and hurt . now

days i enjoy life the best i can things are better not what i want but better

then they have been by a far sight. I would make on suggestion and it is also

some thing i wished my family would have done . go to counseling for Mark your

self and the whole family we did not and looking back wished we had as who knows

it may have helped hold us together . It is also to help understand how it can

change the family as in work time off and such. As for mom well it is harder to

say my kid is sick then it is to say they will be okay. my mother was kind of

like that at first but not any more .I have used all the info I can get to help

others understand stills and how it is to live with it . on thing I say is it is

like all the

fun and games of RJ and lupus and for us a good day is like living with a bad

flue 24/7 365 . I wish you all the best and well if you or Mark can read redneck

writing and want to talk this place is great for that also you can send me a

privet e mail and ask any thing I am open and will give no bull but it still

will only be how a redneck See's it and what he has gone threw so welcome your

at home here and we are a normal dysfunctional family LOL

the redneck

Marty

Calling an illegal alien an " undocumented immigrant " is like calling a drug

dealer an " unlicensed pharmacist. "

" Those who hammer their guns into plows will plow for those who do not. "

~ Jefferson

Stills ; An illness I know to well!

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

To donate http://www.stillsdisease.org/donations

________________________________________________________________________________\

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[Guest guest]

hi jody im new to this whole thing to i also was told i had stills in aug.(it

was around the time of your husband gettting sick) but was till sept that they

really knew,i was in the hospital for 3 weeks 2 weeks at St marys and 1 week at

UM  whats really wierd is that i also saw dr fox and his whole team at UM but

with mine i also have the musle pain with it they told me that was rare dont

know how rare but the my mom was at work one day and ran in to a lady named Elly

and she told her to send me to this website im really shy when it comes to

everything so i dint know what to say or where to start but reading your story

made me write this i am also on kineret they have taken me off the pred but i

still have pain everyday i cant work i can hardly walk i cant even play with my

17month baby which is killing me more than anything but im trying to live with

it and make the best of it but its hard

and to all the others out there if you know anything about the musle part of it

could u please let me know anything on it or tell me of some websites to go to

anything would be helpful

thank you

Introduction and Questions

Hello. My name is Jody and my husband of 12 years (we just celebrated 12 years

on Sunday), Mark, was diagnosed in Sep with SD. He is an architect/project

manager at UM and I am a stay-at-home mom. We are 36 and have 3 wonderful

children...a girl (age 6 1/2) and 2 boys (ages 3 and 14 months). Here is our

story...

Mid-August: Mark was diagnosed (as was the entire family including the 9 month

old baby which is unusual) with Strep Throat...only the second time in his life

he has had it. Ten days later, his antibiotic (Keflex) course was done, but he

complained of a sore throat. It wasn't the same sore throat that he had 10 days

prior, but a sore throat nonetheless. It was Thursday, August 9th, and we were

packing the car to go camping with my whole family (family reunion weekend). We

said to ourselves that day, he will just need to rest once we get up north and

get set up...he is probably coming down with something. Well, the next day was

wonderful...Friday, August 10th is referred to by our 6 year old daughter as the

last day we were happy as a family. Yes, I'm crying while writing this. Anyway,

we went swimming and had a campfire and all was well. The next morning, Sat,

Mark woke up and just didn't feel well. He couldn't put his finger on it, but

just

felt icky. Then, his R knee started hurting, then swelling. By noon, he could

barely walk. By 5, he looked grey and couldn't move his right knee. My dad took

him to the ER. They thought he had a staff infection. Drained his knee and put

him on IV antibiotics and wanted to admit him. He, however, refused to be

admitted and came back to the campsite with the IV still in his arm waiting for

another dose Sun morning. That night, it rained--this is off topic, but too

funny, I must add something to smile :-). Anyway, we were flooded out of our

tent. Yep, 2 inches of water ended up seeping in. The kids were soaked, even the

baby in his Pack-n-Play was getting dripped on. Thankfully, my cousin had her

camper next door to us and had been watching for our light to turn on. So, she

and I grabbed the kids while Mark tried to get out of the tent and across the

mud in the pouring rain on crutches! Oh, and, by the way, that was my

birthday...Sun, Aug 12.

So, at 4 am...we had 5 adults and 5 young kids awake in a camper in the rain. We

decided to get to the ER and go home a day early to get Mark back to Ann Arbor

to his normal doctor/hospital. We got to the ER and they announced that the

fluid from his knee was clear of infection, gave him more IV antibiotics just in

case and sent us home. The next day, Mark went to see his PCP. He diagnosed him

with Serum Sickness (basically a reaction to the Keflex) and put him on pred and

said he would feel much better in 24 hours. So, Mark went to work on Tues

morning. Didn't make it past lunch and was in absolute tears by dinner. This,

from a guy with such a high pain tolerance that he built a deck and other

projects with a torn rotator cuff because it wasn't convenient to have the

surgery (project at work, then I was pregnant and he waited till the baby was 3

months old...had the surgery...and flusehd down most of his meds because he just

doesn't like to take

them). So, for him to be in tears from the pain said a lot. Me, I'm a wimp :-).

I took him to UM ER, they admitted him. Diagnosed him with Rheumatic Fever

(remember the Strep). He was there for 10 days with high fevers spiking 1-2

times a day, said they dissappeared because of the tylenol, and in such agony.

He was so out of it, too. He hardly remembers it still. Kept waking to mumble

about stuff then sleeping again. They sent him home on heavy aspirin doses and

narcotics. He wasn't home 24 hours before I had to get him back again...this

time I didn't think I was going to get him out of the house, but he eventually

scooted on his tush to the stairs and down. By this time, he cannot even use

crutches...it has spread to include both knees, both ankles, both middle fingers

and the L wrist. He passed out twice. The first time we assumed it was from the

pain, but after the 2nd, I took him back to the ER. Now, he is diagnosed with

Diabetes

Insipidus (the pituitary gland isn't functioning and is telling his kidneys to

work overtime so he was dehydrated and passing out). BTW, according to the RD at

UM, they have only found 1 other occurence of SD effecting the pituitary gland

(in Spain...they had the records translated to study). So, he is back in UM for

another 9 days. By this time, Sep 1 rolls around and the hospital teams switch.

He is now being seen by the Chief of R, Dr. Fox, who has been following his case

all along because he was their Mystery Patient. They were having lunches with

other teams daily to try to figure him out. Dr. Fox comes in the first day he is

on-call and says...SD. Still need to rule other things out, but he believes it

is SD. So, they put him on Kineret and pred. He seemed to get better, then they

discharged him before our insurance approved Kineret. They sent him home without

it and he was back worse than ever 2 days later. Mark still thinks that this

was the flare-up that sent him over the edge. He was put back on Kineret (after

a lengthy ordeal at the hospital but that's for another time) and they did not

release him until they got approval for Kineret. Dr. Fox literally called the

insurance co on the phone and yelled at them...his nurse told us all about it:-)

Thank you, Dr. Fox. So, he came home Sep 19 and has yet to go back to work. He

was taking 60mg pred qd, 1 shot Kineret qd, 40mg Oxycodone (ext release) bid,

20mg Oxycodone (fast acting) q4 hours PRN, and morphine PRN. The Kineret is

blocking the fevers. It had started to spread to his L elbow and L hip in the

hospital, but backed off after starting Kineret and hasn't reappeared there.

However, with his last flare-up, it spread to his 2nd R toe. That was just

before Thanksgiving. This past week has been awful, but better than the last

time it was awful. His current meds are...Kineret qd, 40mg Oxy (Ext Rel) bid,

20mg Oxy (fast acting)

q4 hours PRN (and he needs it again...he had tapered off to morning only or not

at all), 15mg pred, 17.5mg MTX, fosomax, bactrim, folic acid. And, he is taking

whole food supplements that our Chiropractor has muscle-tested him for. Whenever

he stops taking the holistic supplements, he gets worse. He stopped again almost

2 weeks ago and Christmas has been awful. But, he has also done more than he

should this past week. He started taking his supplements again today, so we'll

see. He also started tyring the Migun bed last week and that seemed to help, but

hasn't done it since Dec 21. So, maybe that effects him, too.

Okay, I know I've had a lot to say, but no one else seems to understand. His

mother just says, it's arthritis, he'll be fine. Well, he's not fine. He can

hardly move. He is 36 years old and uses a wheelchair to go anyplace that

walking is required. He sleeps all the time and his kids are asking if Daddy is

going to die. The wheelchair we can all handle. It's the pain and fevers (the

Kineret blocks the temp spike, but he still feels feverish), the swelling, the

inability to go somewhere fun with his kids because if he overdoes it, he

flares. This is not him being fine! He is good at getting through stuff and

paying the price later, but this is no way to live. For him or for his kids. Or

for me. I am getting very worn down. It's the ups and downs that do me in. I

just don't know what to expect. It seems no one does. So, I know that no one can

predict what will happen for us, but can anyone give me hope. Might it go away?

Might they figure

out how to help him live with it?

Thanks for letting me tell our story and vent. I really appreciate just being

able to do that. And, now I need some advice, please. At his last dr. appt, his

RD discussed the following option with us. At first, he said he would strongly

advise it since he is not happy with Mark's progress on Kineret. But, then he

actually examined him and felt that we could wait until Jan 15 (next appt) to

discuss it further since Mark actually seemed to improve over the last 3 weeks.

But, now with him doing so much worse and the swelling increasing in his feet,

I'm thinking of calling him Jan 2. This is the option...drop Kineret, start

Remicade. Has anyone tried this? I saw an article on the website about Remicade

being successful with SD, but wanted to hear from you.

Ideally, Mark would like to get off of the pred and MTX (it knocks him out for 2

days after), but his RD says he has to stay on MTX with Remicade.

Okay, I guess that's enough info overload right now. I'm looking forward to

hearing from all of you!

Thanks,

Jody

__________________________________________________________

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Jody and Mark,

I'm so sorry this has happened to you, but I'm glad we are here for you.

I am on Kineret, MTX and Pred also. I've been on Remicade - it helps too.

It really depends on the person. Right now you just have to have patience

which is near Impossible and try to let the Dr's have some time to work out

the meds. I've had SD for years, in fact my new DR (We just moved to be

near my family because of SD and I'm 43, but got really sick about the same

age as your husband) thinks that I probably had JRA/SD when I was a kid, but

that is beside the point. This is to answer your questions and support you

and your family.

The first acute stage is the hardest. Kineret, remicade, pred, and MTX -

they are all critical and have to be balanced by your Dr. THere is nothing

I want more than to get off of MTX. It wipes me out too. But I started to

take a medicine the day after in addition to folic acid that is stronger (i

think it is called Leuvoican or something like that - right now I am in bed

- but I will check the name of it later) - it helps a bit with how MTX

effects me. Also, Kineret helped me with spiking fevers too, but I still

had the lower fevers. My new doctor is having me spread out my pred dose

throughout the day instead of taking it all in the morning. I was getting

temps of up to 102 with Kineret (instead of 104 without), but now with the

pred in the morning and afternoon, my temps are hitting 100 instead.. Much

more tolerable... This might be something you can talk to your Dr about for

Mark if he isn't doing it, because I for one can tell you that nothing

fatigues you more than temps day in and day out.

In regards to his joints - hopefully the pred, mtx and Kineret (or remicade)

will start to make a difference for him. I think it took a few months for it

to start to really help me in that area.

I use Lidoderm patches to help the worse joints - you can put them on for 12

hours at a time - I don't know if Marks doc will think they will help him

or not. I also use Duragesic patches for pain - they are fentynal based and

you use them for chronic pain and then take the oxy or other meds for

breakthrough pain - it helps to reduce the amount of pain meds and give you

a steady amount of pain meds instead of an up and down like the pain pills

do.

Lastly - the emotional support - it's not just arthritis.. This is a major

Change for your family. You need support from you family, friends and us

too. People that understand. It's hard to deal with learning you have a

chronic illness. Every person that has stills has a chance managing it and

going into remission, and you need to remember that. So, no - it isn't the

end of your family life - but your family life has changed, because Mark

will be tired at times and will possibly have flares - no one knows yet how

it will impact him. Encourage him to join the board also with you for

support when he feels up to it. I took years to join this group and wish

that I hadn't. I wish I had joined it as soon as I was Diagnosed for

support. The people in this group are loving and caring and have really

come to mean a great deal to me. I've had a really tough few months -

moving was hard - I was really sick and then I fell and broke a rib on top

of it - these people really encouraged me and that is what both of you need.

Anyway - Stay encouraged - know that you are loved and cared about and that

Stills is not the end of the road. It's a battle - sure, and some times it

s the battle none of us want. But it makes us stronger and gives us a bond

between each other that many people don't have.

It sounds like Mark is a fighter and he will fight this battle and win - so

stay strong... Hang in there.

We care,

-- Introduction and Questions

Hello. My name is Jody and my husband of 12 years (we just celebrated 12

years on Sunday), Mark, was diagnosed in Sep with SD. He is an

architect/project manager at UM and I am a stay-at-home mom. We are 36 and

have 3 wonderful children...a girl (age 6 1/2) and 2 boys (ages 3 and 14

months). Here is our story...

Mid-August: Mark was diagnosed (as was the entire family including the 9

month old baby which is unusual) with Strep Throat...only the second time in

his life he has had it. Ten days later, his antibiotic (Keflex) course was

done, but he complained of a sore throat. It wasn't the same sore throat

that he had 10 days prior, but a sore throat nonetheless. It was Thursday,

August 9th, and we were packing the car to go camping with my whole family

(family reunion weekend). We said to ourselves that day, he will just need

to rest once we get up north and get set up...he is probably coming down

with something. Well, the next day was wonderful...Friday, August 10th is

referred to by our 6 year old daughter as the last day we were happy as a

family. Yes, I'm crying while writing this. Anyway, we went swimming and had

a campfire and all was well. The next morning, Sat, Mark woke up and just

didn't feel well. He couldn't put his finger on it, but just

felt icky. Then, his R knee started hurting, then swelling. By noon, he

could barely walk. By 5, he looked grey and couldn't move his right knee. My

dad took him to the ER. They thought he had a staff infection. Drained his

knee and put him on IV antibiotics and wanted to admit him. He, however,

refused to be admitted and came back to the campsite with the IV still in

his arm waiting for another dose Sun morning. That night, it rained--this is

off topic, but too funny, I must add something to smile :-). Anyway, we were

flooded out of our tent. Yep, 2 inches of water ended up seeping in. The

kids were soaked, even the baby in his Pack-n-Play was getting dripped on.

Thankfully, my cousin had her camper next door to us and had been watching

for our light to turn on. So, she and I grabbed the kids while Mark tried to

get out of the tent and across the mud in the pouring rain on crutches! Oh,

and, by the way, that was my birthday...Sun, Aug 12.

So, at 4 am...we had 5 adults and 5 young kids awake in a camper in the rain

We decided to get to the ER and go home a day early to get Mark back to Ann

Arbor to his normal doctor/hospital. We got to the ER and they announced

that the fluid from his knee was clear of infection, gave him more IV

antibiotics just in case and sent us home. The next day, Mark went to see

his PCP. He diagnosed him with Serum Sickness (basically a reaction to the

Keflex) and put him on pred and said he would feel much better in 24 hours.

So, Mark went to work on Tues morning. Didn't make it past lunch and was in

absolute tears by dinner. This, from a guy with such a high pain tolerance

that he built a deck and other projects with a torn rotator cuff because it

wasn't convenient to have the surgery (project at work, then I was pregnant

and he waited till the baby was 3 months old...had the surgery...and flusehd

down most of his meds because he just doesn't like to take

them). So, for him to be in tears from the pain said a lot. Me, I'm a wimp

:-). I took him to UM ER, they admitted him. Diagnosed him with Rheumatic

Fever (remember the Strep). He was there for 10 days with high fevers

spiking 1-2 times a day, said they dissappeared because of the tylenol, and

in such agony. He was so out of it, too. He hardly remembers it still. Kept

waking to mumble about stuff then sleeping again. They sent him home on

heavy aspirin doses and narcotics. He wasn't home 24 hours before I had to

get him back again...this time I didn't think I was going to get him out of

the house, but he eventually scooted on his tush to the stairs and down. By

this time, he cannot even use crutches...it has spread to include both knees

both ankles, both middle fingers and the L wrist. He passed out twice. The

first time we assumed it was from the pain, but after the 2nd, I took him

back to the ER. Now, he is diagnosed with Diabetes

Insipidus (the pituitary gland isn't functioning and is telling his kidneys

to work overtime so he was dehydrated and passing out). BTW, according to

the RD at UM, they have only found 1 other occurence of SD effecting the

pituitary gland (in Spain...they had the records translated to study). So,

he is back in UM for another 9 days. By this time, Sep 1 rolls around and

the hospital teams switch. He is now being seen by the Chief of R, Dr. Fox,

who has been following his case all along because he was their Mystery

Patient. They were having lunches with other teams daily to try to figure

him out. Dr. Fox comes in the first day he is on-call and says...SD. Still

need to rule other things out, but he believes it is SD. So, they put him on

Kineret and pred. He seemed to get better, then they discharged him before

our insurance approved Kineret. They sent him home without it and he was

back worse than ever 2 days later. Mark still thinks that this

was the flare-up that sent him over the edge. He was put back on Kineret

(after a lengthy ordeal at the hospital but that's for another time) and

they did not release him until they got approval for Kineret. Dr. Fox

literally called the insurance co on the phone and yelled at them...his

nurse told us all about it:-) Thank you, Dr. Fox. So, he came home Sep 19

and has yet to go back to work. He was taking 60mg pred qd, 1 shot Kineret

qd, 40mg Oxycodone (ext release) bid, 20mg Oxycodone (fast acting) q4 hours

PRN, and morphine PRN. The Kineret is blocking the fevers. It had started to

spread to his L elbow and L hip in the hospital, but backed off after

starting Kineret and hasn't reappeared there. However, with his last

flare-up, it spread to his 2nd R toe. That was just before Thanksgiving.

This past week has been awful, but better than the last time it was awful.

His current meds are...Kineret qd, 40mg Oxy (Ext Rel) bid, 20mg Oxy (fast

acting)

q4 hours PRN (and he needs it again...he had tapered off to morning only or

not at all), 15mg pred, 17.5mg MTX, fosomax, bactrim, folic acid. And, he is

taking whole food supplements that our Chiropractor has muscle-tested him

for. Whenever he stops taking the holistic supplements, he gets worse. He

stopped again almost 2 weeks ago and Christmas has been awful. But, he has

also done more than he should this past week. He started taking his

supplements again today, so we'll see. He also started tyring the Migun bed

last week and that seemed to help, but hasn't done it since Dec 21. So,

maybe that effects him, too.

Okay, I know I've had a lot to say, but no one else seems to understand. His

mother just says, it's arthritis, he'll be fine. Well, he's not fine. He can

hardly move. He is 36 years old and uses a wheelchair to go anyplace that

walking is required. He sleeps all the time and his kids are asking if Daddy

is going to die. The wheelchair we can all handle. It's the pain and fevers

(the Kineret blocks the temp spike, but he still feels feverish), the

swelling, the inability to go somewhere fun with his kids because if he

overdoes it, he flares. This is not him being fine! He is good at getting

through stuff and paying the price later, but this is no way to live. For

him or for his kids. Or for me. I am getting very worn down. It's the ups

and downs that do me in. I just don't know what to expect. It seems no one

does. So, I know that no one can predict what will happen for us, but can

anyone give me hope. Might it go away? Might they figure

out how to help him live with it?

Thanks for letting me tell our story and vent. I really appreciate just

being able to do that. And, now I need some advice, please. At his last dr.

appt, his RD discussed the following option with us. At first, he said he

would strongly advise it since he is not happy with Mark's progress on

Kineret. But, then he actually examined him and felt that we could wait

until Jan 15 (next appt) to discuss it further since Mark actually seemed to

improve over the last 3 weeks. But, now with him doing so much worse and the

swelling increasing in his feet, I'm thinking of calling him Jan 2. This is

the option...drop Kineret, start Remicade. Has anyone tried this? I saw an

article on the website about Remicade being successful with SD, but wanted

to hear from you.

Ideally, Mark would like to get off of the pred and MTX (it knocks him out

for 2 days after), but his RD says he has to stay on MTX with Remicade.

Okay, I guess that's enough info overload right now. I'm looking forward to

hearing from all of you!

Thanks,

Jody

__________________________________________________________

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Hi ,

It's Melt again,

Remember we met in Chat a week or so ago? It's good to see you again. I know

it hurts to have a baby and be so sick. My family used to help when my daughter

was a baby and I also had friends that would come just to play with her on days

so that she would have that time I couldn't give.

I did have the muscle inflammation with mine as well and was told Still's can

affect muscles and any connecting tissues. That is one of the reason's it is

different from Rheumatoid. It can affect the whole system and any part of it I

believe. I was sent to therapy many times throughout the years where they gave

me treatments of warm wax, jaccuzi, ice, range of motion and of course at home

warm packs or ice over the years to help reduce swelling and pain. My doctor

would advise me that too hot would bring on more inflammation but if an area was

red and hot already was when I was to use ice. You should always ask your

doctor what's best FOR ANY TREATMENT. Anti-inflammatories help me a lot with

that part of Still's. There are many and it's a matter of trying which works

best for you. I've used Naproxin mostly all these years. One important thing

is these medications can be hard on our stomaches and ask your doctor about

something to help reduce the stomache acids like Malox?

I hope any of this helps. Feel free to email me if you like any time and

welcome to the group.

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

From: shortiepie710@...

hi jody im new to this whole thing to i also was told i had stills in aug.(it

was around the time of your husband gettting sick) but was till sept that they

really knew,i was in the hospital for 3 weeks 2 weeks at St marys and 1 week at

UM whats really wierd is that i also saw dr fox and his whole team at UM but

with mine i also have the musle pain with it they told me that was rare dont

know how rare

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My daughter had painful stomach cramps from the MTX and her DR lowered her MTX

and it seemed to help. She is on 5mg of pred, 6 of MTX and the Kineret

injectioin. When she left the hospital in April she was on 80 mg of pred and 8

of MTX. In the hospital she was on 240 mg of pred before they could get her

pain under control. She could not move a muscle and she got pericarditis and

had to have a pericardia window put in her. I understand the wheel chair. At

just 8 of MTX, she would get horrible pains after her injection. She tried

Enbrel, but could not lower the pred until we started the Kineret. I never

would have known about the Kineret if I had not read the mail from you all. I

kept suggesting it to her doctor until he decided to try it and it has been

great for now. Thanks for your help.

Lil

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[Guest guest]

Howdy Jodi & Mark, I am Kirk, 36, (Al Bundy'd (Married w/ children)) (2

boys) 9 & on 6. I've been married for just under 12 years,

although we dated for 8 prior to that. I'm from NE Pennsylvania, between

Wilkes-Barre & Scranton...real close to Bear Creek.

I didn't feel well starting in November of '03. Being self employed, in

great shape and mentally invincible....I didn't even go to the Dr. We were

slammed at work (I owned an auto repair garage) and I couldn't miss any work

(in my own mind). I kept feeling worse by the week, but kept brushing it

off. The holiday season that year was horrible for me as I was nowhere near

myself. Finally around January 14th,2004 I awoke @ 3:30 AM in excruciating

pain, an indescribable headache, wicked chills and a throat so sore &

swollen I couldn't speak at all. I was watching a hockey game the night

before and had passed out in my basement on the couch. I was screwed, and

layed in agony for over two hours before I was able to knock on the wall

hard enough to make my dog bark & wife wake up. At that time my temp was

over 106, and she rushed me to the ER. After waiting 4 hours my fever had

dropped to 102, but they called it strep throat, wrote me a few scripts and

sent me home.

Four whole days later.....I passed out in the basement again and was hit

even harder. I couldn't move anything, and my headache was so bad I prayed

God to kill me asap! Back to the ER, where after another 4 hour wait my temp

actually had risen to 105. I was admitted, hospitalized for a week and sent

home with a few possible problems, but nothing chiseled in stone. They gave

me some horse pills (Ibuprofen) and Vicodin.

Two weeks to the day where I was released.....back in, except this time

for 10 or 11 days. That was the first time I saw a rheumy, and Stills was

one of the possibilities he mentioned. The absolute worst part for me has

and continues to be the headaches, although many other problems are catching

up...more on that later.

As soon as I got home I got on the computer to check out stills....and my

heart sank as I read about it as it just about described everything I was

dealing with except the headaches. Within a month, I was hospitalized for a

couple of weeks and diagnosed with stills. On my ride home both of my wrists

swelled so badly I couldn't move them.

All of this very possibly may have begun with me in July 1990, while

stationed @ Ft. Benning, Ga. A few days after receiving all of my shots I

wound up with wicked fevers, chills, swollen joints, sore throat and an

indescibable headache.......but the military in support of its' vets can't

seem to be able to locate any of my hospital records or even provide me with

the name of the hospital I would have been at. I was hospitalized there 9-10

days, I don't recall much as I was more out of it than in it.

Okay...I had to get that out there, sorry. Since I've been officially

diagnosed with Stills, my life has gone to shit in a rather large way. Prior

to getting " whacked " , I was a power lifter (3-4 nights per week) and after

years of trying finally bench pressed 400lbs. I'm only 5'6.5 " , but was a

lean 230. I was stronger than hell and pretty much immune to pain. Within a

year of getting nailed, my back had deteriorated so badly I couldn't walk.

Damage shows up on MRI's & such, but they couldn't figure out why I was in

so much pain. After months of hell, using a walker & a wheelchair they

finally decided that I needed either surgery (they wanted to do too much for

my taste) or insert an indwelling morphine pump near my stomach. I opted for

that, and that at least works. I now have osteoporosis of the spine, severe

hip, knee and back pains, broke many of my teeth, had my tonsils removed & a

deviated septum straightened out (which put me into the ICU for 8 days) and

so on & so forth.

Needless to say...I'm totally unreliable anymore. I tend to do better in

the summer, but each day to me is like a roll of the dice. I've been

hospitalized in at least 7 hospitals including the University of Penn.,

Jefferson Headache Center (13 days...no answers), s Hopkins (biggest

joke I've seen to date....being that I didn't come to them 1st they wanted

nothing to do with me) Hershey Medical Center (They were great, but solved

nothing) and two local hospitals. I think I'm one short of 30 for times I've

been hospitalized in under 4 years, and I won't go unless I have no choice

any more as I'm sick of being sick!!!!!

I was on Enbrel for roughly a year (12/04-12/05) and that caused

horrible neurological problems....some which have cleared up and some that

haven't. Leave it to me to be the one person that wouldn't handle that

stuff, as most people do well on it.

My family life has gone to shit, and if it wasn't for my kids I'd be

long gone. My wife loves to think that I became lazy and " sees " nothing

wrong with me. To sum that up my relationship with her essentially ended the

minute I got sick. My kids on the other hand are about the only thing that

keeps me going..I even got into coaching mini-football when my youngest

turned 5 to give me something to do. We've tried therapy, but so not to

sound as if I'm badmouthing her I won't disclose what happened with that.

I'm real sorry you had to get this, but you've found a great group. The

one thing I must add is that most people won't get it as bad as I (and so0me

others) have it. I've seen some feel great a few months after getting it, as

this can go into remission. I think that is what happened to me, and one day

I'll have the records to prove it, as I have never given up on getting my

military med. records. I hope you have an early remission and get back to a

normal life, as this can get real hairy and turn a jovial dude into a

miserable SOB at times.

Keep in touch, and don't be afraid to ask ANYTHING!!!! Trust me, with the

knowledge you can gain from this list you will eventually be able to educate

a lot of ignorant Dr's & Nurses!!!!

Have a Happy New Year.

Kirk Bonanny kbonanny@...

>

> Hello. My name is Jody and my husband of 12 years (we just celebrated 12

> years on Sunday), Mark, was diagnosed in Sep with SD. He is an

> architect/project manager at UM and I am a stay-at-home mom. We are 36 and

> have 3 wonderful children...a girl (age 6 1/2) and 2 boys (ages 3 and 14

> months). Here is our story...

>

> Mid-August: Mark was diagnosed (as was the entire family including the 9

> month old baby which is unusual) with Strep Throat...only the second time in

> his life he has had it. Ten days later, his antibiotic (Keflex) course was

> done, but he complained of a sore throat. It wasn't the same sore throat

> that he had 10 days prior, but a sore throat nonetheless. It was Thursday,

> August 9th, and we were packing the car to go camping with my whole family

> (family reunion weekend). We said to ourselves that day, he will just need

> to rest once we get up north and get set up...he is probably coming down

> with something. Well, the next day was wonderful...Friday, August 10th is

> referred to by our 6 year old daughter as the last day we were happy as a

> family. Yes, I'm crying while writing this. Anyway, we went swimming and had

> a campfire and all was well. The next morning, Sat, Mark woke up and just

> didn't feel well. He couldn't put his finger on it, but just

> felt icky. Then, his R knee started hurting, then swelling. By noon, he

> could barely walk. By 5, he looked grey and couldn't move his right knee. My

> dad took him to the ER. They thought he had a staff infection. Drained his

> knee and put him on IV antibiotics and wanted to admit him. He, however,

> refused to be admitted and came back to the campsite with the IV still in

> his arm waiting for another dose Sun morning. That night, it rained--this is

> off topic, but too funny, I must add something to smile :-). Anyway, we were

> flooded out of our tent. Yep, 2 inches of water ended up seeping in. The

> kids were soaked, even the baby in his Pack-n-Play was getting dripped on.

> Thankfully, my cousin had her camper next door to us and had been watching

> for our light to turn on. So, she and I grabbed the kids while Mark tried to

> get out of the tent and across the mud in the pouring rain on crutches! Oh,

> and, by the way, that was my birthday...Sun, Aug 12.

> So, at 4 am...we had 5 adults and 5 young kids awake in a camper in the

> rain. We decided to get to the ER and go home a day early to get Mark back

> to Ann Arbor to his normal doctor/hospital. We got to the ER and they

> announced that the fluid from his knee was clear of infection, gave him more

> IV antibiotics just in case and sent us home. The next day, Mark went to see

> his PCP. He diagnosed him with Serum Sickness (basically a reaction to the

> Keflex) and put him on pred and said he would feel much better in 24 hours.

> So, Mark went to work on Tues morning. Didn't make it past lunch and was in

> absolute tears by dinner. This, from a guy with such a high pain tolerance

> that he built a deck and other projects with a torn rotator cuff because it

> wasn't convenient to have the surgery (project at work, then I was pregnant

> and he waited till the baby was 3 months old...had the surgery...and flusehd

> down most of his meds because he just doesn't like to take

> them). So, for him to be in tears from the pain said a lot. Me, I'm a wimp

> :-). I took him to UM ER, they admitted him. Diagnosed him with Rheumatic

> Fever (remember the Strep). He was there for 10 days with high fevers

> spiking 1-2 times a day, said they dissappeared because of the tylenol, and

> in such agony. He was so out of it, too. He hardly remembers it still. Kept

> waking to mumble about stuff then sleeping again. They sent him home on

> heavy aspirin doses and narcotics. He wasn't home 24 hours before I had to

> get him back again...this time I didn't think I was going to get him out of

> the house, but he eventually scooted on his tush to the stairs and down. By

> this time, he cannot even use crutches...it has spread to include both

> knees, both ankles, both middle fingers and the L wrist. He passed out

> twice. The first time we assumed it was from the pain, but after the 2nd, I

> took him back to the ER. Now, he is diagnosed with Diabetes

> Insipidus (the pituitary gland isn't functioning and is telling his

> kidneys to work overtime so he was dehydrated and passing out). BTW,

> according to the RD at UM, they have only found 1 other occurence of SD

> effecting the pituitary gland (in Spain...they had the records translated to

> study). So, he is back in UM for another 9 days. By this time, Sep 1 rolls

> around and the hospital teams switch. He is now being seen by the Chief of

> R, Dr. Fox, who has been following his case all along because he was their

> Mystery Patient. They were having lunches with other teams daily to try to

> figure him out. Dr. Fox comes in the first day he is on-call and says...SD.

> Still need to rule other things out, but he believes it is SD. So, they put

> him on Kineret and pred. He seemed to get better, then they discharged him

> before our insurance approved Kineret. They sent him home without it and he

> was back worse than ever 2 days later. Mark still thinks that this

> was the flare-up that sent him over the edge. He was put back on Kineret

> (after a lengthy ordeal at the hospital but that's for another time) and

> they did not release him until they got approval for Kineret. Dr. Fox

> literally called the insurance co on the phone and yelled at them...his

> nurse told us all about it:-) Thank you, Dr. Fox. So, he came home Sep 19

> and has yet to go back to work. He was taking 60mg pred qd, 1 shot Kineret

> qd, 40mg Oxycodone (ext release) bid, 20mg Oxycodone (fast acting) q4 hours

> PRN, and morphine PRN. The Kineret is blocking the fevers. It had started to

> spread to his L elbow and L hip in the hospital, but backed off after

> starting Kineret and hasn't reappeared there. However, with his last

> flare-up, it spread to his 2nd R toe. That was just before Thanksgiving.

> This past week has been awful, but better than the last time it was awful.

> His current meds are...Kineret qd, 40mg Oxy (Ext Rel) bid, 20mg Oxy (fast

> acting)

> q4 hours PRN (and he needs it again...he had tapered off to morning only

> or not at all), 15mg pred, 17.5mg MTX, fosomax, bactrim, folic acid. And,

> he is taking whole food supplements that our Chiropractor has muscle-tested

> him for. Whenever he stops taking the holistic supplements, he gets worse.

> He stopped again almost 2 weeks ago and Christmas has been awful. But, he

> has also done more than he should this past week. He started taking his

> supplements again today, so we'll see. He also started tyring the Migun bed

> last week and that seemed to help, but hasn't done it since Dec 21. So,

> maybe that effects him, too.

>

> Okay, I know I've had a lot to say, but no one else seems to understand.

> His mother just says, it's arthritis, he'll be fine. Well, he's not fine. He

> can hardly move. He is 36 years old and uses a wheelchair to go anyplace

> that walking is required. He sleeps all the time and his kids are asking if

> Daddy is going to die. The wheelchair we can all handle. It's the pain and

> fevers (the Kineret blocks the temp spike, but he still feels feverish), the

> swelling, the inability to go somewhere fun with his kids because if he

> overdoes it, he flares. This is not him being fine! He is good at getting

> through stuff and paying the price later, but this is no way to live. For

> him or for his kids. Or for me. I am getting very worn down. It's the ups

> and downs that do me in. I just don't know what to expect. It seems no one

> does. So, I know that no one can predict what will happen for us, but can

> anyone give me hope. Might it go away? Might they figure

> out how to help him live with it?

>

> Thanks for letting me tell our story and vent. I really appreciate just

> being able to do that. And, now I need some advice, please. At his last dr.

> appt, his RD discussed the following option with us. At first, he said he

> would strongly advise it since he is not happy with Mark's progress on

> Kineret. But, then he actually examined him and felt that we could wait

> until Jan 15 (next appt) to discuss it further since Mark actually seemed to

> improve over the last 3 weeks. But, now with him doing so much worse and the

> swelling increasing in his feet, I'm thinking of calling him Jan 2. This is

> the option...drop Kineret, start Remicade. Has anyone tried this? I saw an

> article on the website about Remicade being successful with SD, but wanted

> to hear from you.

>

> Ideally, Mark would like to get off of the pred and MTX (it knocks him out

> for 2 days after), but his RD says he has to stay on MTX with Remicade.

>

> Okay, I guess that's enough info overload right now. I'm looking forward

> to hearing from all of you!

>

> Thanks,

>

> Jody

>

> __________________________________________________________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

>

[Guest guest]

Hi there Jody and Mark:

I realize I maybe a bit late on this reponse and I apologize for that

but I must say I'm glad you found your way to us.

I was diagnosed almost 14 years ago (I actually had to think about

that) up in Peekskill, NY. A year later we moved to Florida and I've

been doing fairly well since. I suppose there's something to be said

for the warmer climate.

We are all dealing with the same dragon but in our own ways. You

might hear hysterical, laugh out loud stories, you might read

horrible things but we're one very large, very supportive, very

wonderful family. Welcome to the fold.

Take care and be well. Happy and healthier New Year!

Ellen

[Guest guest]

Hi Jody,

I just wanted to say that there is hope!!

I had stills as a child and it followed the pattern that you describe for

your husband - strep throat then very rapid deterioration in to high temps

and total joint involvement.

However, I always went in to remission and then for around 16 years total

remission - no pain, no symptoms, no drugs, no limitations.

I had my first adult flare around 8 years ago now, at the age of 31 and it

was a biggie! It came on a little slower and the stupid doc insisted it

was hepatitis even though I knew better, eventually leading to the usual

temperatures and immobility - just as your poor husband is now. It is good

that they have diagnosed and treated it quickly as that will help.

Never give up hope Jody. Here I am, back on my feet relying on just a

small dose of prednisolone as I have done for around 5 years now and most

of the time I feel great. I have had to slow down a bit and I do still

plan periods of " rest " but I still do a lot more than most people do and it

really effects my life very little, so long as I don't forget *it* and look

after my health and energy levels.

I hope your husband begins to feel better soon and the best thing he can do

is to NOT overdo it - I know this is going to be tough for him as he sounds

like the kind of " do anything and just get on with it " guy that I used to

be, and in fact that I still am - I'm just more sensible about things these

days...

Wishing you all the best for the future,

Graham (39)

West Sussex, UK

xx

At 21:18 29/12/2007, you wrote:

>Hello. My name is Jody and my husband of 12 years (we just celebrated 12

>years on Sunday), Mark, was diagnosed in Sep with SD. He is an

>architect/project manager at UM and I am a stay-at-home mom. We are 36 and

>have 3 wonderful children...a girl (age 6 1/2) and 2 boys (ages 3 and 14

>months). Here is our story...

>

>Mid-August: Mark was diagnosed (as was the entire family including the 9

>month old baby which is unusual) with Strep Throat...only the second time

>in his life he has had it. Ten days later, his antibiotic (Keflex) course

>was done, but he complained of a sore throat. It wasn't the same sore

>throat that he had 10 days prior, but a sore throat nonetheless. It was

>Thursday, August 9th, and we were packing the car to go camping with my

>whole family (family reunion weekend). We said to ourselves that day, he

>will just need to rest once we get up north and get set up...he is

>probably coming down with something. Well, the next day was

>wonderful...Friday, August 10th is referred to by our 6 year old daughter

>as the last day we were happy as a family. Yes, I'm crying while writing

>this. Anyway, we went swimming and had a campfire and all was well. The

>next morning, Sat, Mark woke up and just didn't feel well. He couldn't put

>his finger on it, but just

>felt icky. Then, his R knee started hurting, then swelling. By noon, he

>could barely walk. By 5, he looked grey and couldn't move his right knee.

>My dad took him to the ER. They thought he had a staff infection. Drained

>his knee and put him on IV antibiotics and wanted to admit him. He,

>however, refused to be admitted and came back to the campsite with the IV

>still in his arm waiting for another dose Sun morning. That night, it

>rained--this is off topic, but too funny, I must add something to smile

>:-). Anyway, we were flooded out of our tent. Yep, 2 inches of water ended

>up seeping in. The kids were soaked, even the baby in his Pack-n-Play was

>getting dripped on. Thankfully, my cousin had her camper next door to us

>and had been watching for our light to turn on. So, she and I grabbed the

>kids while Mark tried to get out of the tent and across the mud in the

>pouring rain on crutches! Oh, and, by the way, that was my birthday...Sun,

>Aug 12.

>So, at 4 am...we had 5 adults and 5 young kids awake in a camper in the

>rain. We decided to get to the ER and go home a day early to get Mark back

>to Ann Arbor to his normal doctor/hospital. We got to the ER and they

>announced that the fluid from his knee was clear of infection, gave him

>more IV antibiotics just in case and sent us home. The next day, Mark went

>to see his PCP. He diagnosed him with Serum Sickness (basically a reaction

>to the Keflex) and put him on pred and said he would feel much better in

>24 hours. So, Mark went to work on Tues morning. Didn't make it past lunch

>and was in absolute tears by dinner. This, from a guy with such a high

>pain tolerance that he built a deck and other projects with a torn rotator

>cuff because it wasn't convenient to have the surgery (project at work,

>then I was pregnant and he waited till the baby was 3 months old...had the

>surgery...and flusehd down most of his meds because he just doesn't like

>to take

>them). So, for him to be in tears from the pain said a lot. Me, I'm a wimp

>:-). I took him to UM ER, they admitted him. Diagnosed him with Rheumatic

>Fever (remember the Strep). He was there for 10 days with high fevers

>spiking 1-2 times a day, said they dissappeared because of the tylenol,

>and in such agony. He was so out of it, too. He hardly remembers it still.

>Kept waking to mumble about stuff then sleeping again. They sent him home

>on heavy aspirin doses and narcotics. He wasn't home 24 hours before I had

>to get him back again...this time I didn't think I was going to get him

>out of the house, but he eventually scooted on his tush to the stairs and

>down. By this time, he cannot even use crutches...it has spread to include

>both knees, both ankles, both middle fingers and the L wrist. He passed

>out twice. The first time we assumed it was from the pain, but after the

>2nd, I took him back to the ER. Now, he is diagnosed with Diabetes

>Insipidus (the pituitary gland isn't functioning and is telling his

>kidneys to work overtime so he was dehydrated and passing out). BTW,

>according to the RD at UM, they have only found 1 other occurence of SD

>effecting the pituitary gland (in Spain...they had the records translated

>to study). So, he is back in UM for another 9 days. By this time, Sep 1

>rolls around and the hospital teams switch. He is now being seen by the

>Chief of R, Dr. Fox, who has been following his case all along because he

>was their Mystery Patient. They were having lunches with other teams daily

>to try to figure him out. Dr. Fox comes in the first day he is on-call and

>says...SD. Still need to rule other things out, but he believes it is SD.

>So, they put him on Kineret and pred. He seemed to get better, then they

>discharged him before our insurance approved Kineret. They sent him home

>without it and he was back worse than ever 2 days later. Mark still thinks

>that this

>was the flare-up that sent him over the edge. He was put back on Kineret

>(after a lengthy ordeal at the hospital but that's for another time) and

>they did not release him until they got approval for Kineret. Dr. Fox

>literally called the insurance co on the phone and yelled at them...his

>nurse told us all about it:-) Thank you, Dr. Fox. So, he came home Sep 19

>and has yet to go back to work. He was taking 60mg pred qd, 1 shot Kineret

>qd, 40mg Oxycodone (ext release) bid, 20mg Oxycodone (fast acting) q4

>hours PRN, and morphine PRN. The Kineret is blocking the fevers. It had

>started to spread to his L elbow and L hip in the hospital, but backed off

>after starting Kineret and hasn't reappeared there. However, with his last

>flare-up, it spread to his 2nd R toe. That was just before Thanksgiving.

>This past week has been awful, but better than the last time it was awful.

>His current meds are...Kineret qd, 40mg Oxy (Ext Rel) bid, 20mg Oxy (fast

>acting)

>q4 hours PRN (and he needs it again...he had tapered off to morning only

>or not at all), 15mg pred, 17.5mg MTX, fosomax, bactrim, folic acid. And,

>he is taking whole food supplements that our Chiropractor has

>muscle-tested him for. Whenever he stops taking the holistic supplements,

>he gets worse. He stopped again almost 2 weeks ago and Christmas has been

>awful. But, he has also done more than he should this past week. He

>started taking his supplements again today, so we'll see. He also started

>tyring the Migun bed last week and that seemed to help, but hasn't done it

>since Dec 21. So, maybe that effects him, too.

>

>Okay, I know I've had a lot to say, but no one else seems to understand.

>His mother just says, it's arthritis, he'll be fine. Well, he's not fine.

>He can hardly move. He is 36 years old and uses a wheelchair to go

>anyplace that walking is required. He sleeps all the time and his kids are

>asking if Daddy is going to die. The wheelchair we can all handle. It's

>the pain and fevers (the Kineret blocks the temp spike, but he still feels

>feverish), the swelling, the inability to go somewhere fun with his kids

>because if he overdoes it, he flares. This is not him being fine! He is

>good at getting through stuff and paying the price later, but this is no

>way to live. For him or for his kids. Or for me. I am getting very worn

>down. It's the ups and downs that do me in. I just don't know what to

>expect. It seems no one does. So, I know that no one can predict what will

>happen for us, but can anyone give me hope. Might it go away? Might they figure

>out how to help him live with it?

>

>Thanks for letting me tell our story and vent. I really appreciate just

>being able to do that. And, now I need some advice, please. At his last

>dr. appt, his RD discussed the following option with us. At first, he said

>he would strongly advise it since he is not happy with Mark's progress on

>Kineret. But, then he actually examined him and felt that we could wait

>until Jan 15 (next appt) to discuss it further since Mark actually seemed

>to improve over the last 3 weeks. But, now with him doing so much worse

>and the swelling increasing in his feet, I'm thinking of calling him Jan

>2. This is the option...drop Kineret, start Remicade. Has anyone tried

>this? I saw an article on the website about Remicade being successful with

>SD, but wanted to hear from you.

>

>Ideally, Mark would like to get off of the pred and MTX (it knocks him out

>for 2 days after), but his RD says he has to stay on MTX with Remicade.

>

>Okay, I guess that's enough info overload right now. I'm looking forward

>to hearing from all of you!

>

>Thanks,

>

>Jody

>

>__________________________________________________________

>Never miss a thing. Make Yahoo your home page.

><http://www.yahoo.com/r/hs>http://www.yahoo.com/r/hs

>

>

[Guest guest]

Lil,

I also had stomach trouble with the MTX. Lowering the MTX made the MTX

ineffective. So my doctor had me switch to MTX shots once per week. I like the

shots a lot better. Just something to keep in mind if the lower dose ends up not

being as effective.

Fayette, OH

---------------------------------

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