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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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