Re: I need answers

[Guest guest]

Dear Jenaka; I have had Still's diagnosed since 1977 and am now 44

years old. I do remember at onset loosing so much weight, severe

anemia and my doctors told me this was a characteristic of Still's.

I am 5'9 " and lost to 111 lbs. To fight the anemia I was

hospitalized twice for iron infusions and then a couple of years into

the Still's my stomache would not even hold down water also. My

doctors did many tests and I recall they felt it was a side affect of

the strenght of the medications. I think they reduced doses for a

while and had me eat or drink anything such as malts, ice cream. My

doctor's name was and still is: J. Nolan MD., A.P.C. Arthritis

Consultants of North San Diego County, Calif. Telephone number is 1-

760-724-5800 and fax is 1-760-724-1617. My doctor MAY be willing to

consult over the phone about Kim's case. I am not posative but he

did a wonderful job of managing mine for these past 25 years.

Anything would be worth a try at this point. I remember my families

reaction to my massise weight loss during those years. They were so

very conserned. I do wish you the best of luck and hope his doctor's

will figure out the best course of treatment for him. Please let us

know how it goes. Many prayers, Pattymelt

They are trying to find

> why he is so anemic and why he is still loosing weight. With all

the meds

> he is on, he should gain weight, but he is still loosing a lot.

Down to

> 115lbs now.

[Guest guest]

what is his hemoglobin and hemacrit numbers? Mine went as low as 6.9 for my

hemoglobin, my crit was 19, the stills itself can be responsible for this

severe anemia, or is he taking any NSAIDS like ibuprofen or any of the

others? They can cause microscopic hematuria, (so can the stills) and you

are loosing blood through your kidneys, you wont see any blood in the urine,

it can only be seen under the microscope, have them do a urinalysis and look

for red blood cells, this could be causing the severe anemia.

[Guest guest]

> Now he has developed a severe reaction to anything that goes in his

stomage.

> Every time he eats or drinks anything, including water, he has

severe pain.

> Naturally, he does not like to eat anymore, he humors me though and

eats

> some anyway.

I had a similiar, and it eventually went away. (Ol'medical mind Jen

can tell you which ones, but digestive tract disorders are common in

us.)

I'm not much help with the physiology and meds, but I can tell you

that for me, when the stomach pain hit, tonic water with quinine

works instantly for me. The taste is awful, btw.

I still have some in my refrigerator now. I buy the little six packs,

instead of the 2 liter bottles, so it won't go flat.

There's no medical research or anything, but I stumbled on this one

night in desperation. With me, sometimes carbonated drinks would help

a little, but the only thing I had in my fridge was mixers from a

party. No real soda, just tonic water. It turned out to be a stoke

of luck, because it really was a miracle cure for me.

No guarantees, but I don't think it will hurt to try.

Angie

[Guest guest]

Hey Guys:

As for the taste of the Quinine water. I love the stuff

and drink it as a normal thirst quencher but I use a little FRESH lime

juice and the taste is great. I always have been a little kookie but I do

love the stuff. It does work for the pain and also for indigestion also, at

least it does for me! Take care now and be PAIN FREE!

We Will Win

Love Y'all

Bob & Carole

Please Visit the International Stills Disease Foundation Web Site at:

www.stillsdisease.org

[Guest guest]

Jenaka,

I'm the one who previously sent you my phone number so here it is again:

801-568-9041. I live about 20 min. north of Lehi. I'll actually be gone to

NC when you're in town this next trip or I would love to meet with you. I'm

so sorry to hear Kim is having such a rough time of it. I've never had the

weight loss problem but I have had and continue to have significant anemia.

My old rheumy put me on Epogen injections which help your body build more red

blood cells (Like Procrit you see advertised on TV for cancer patients going

through chemo). The injections did seem to help me but my rheumy moved and

the new one will not prescribe them. You may want to have your

rheumatologist check with a hematologist and see if this might be an option

for Kim. As far as the loss of weight, I know of two people who actually

lose while on Prednisone though it's very rare. Here's wishing strength for

both you and Kim. I hope the doctors can find something to help Kim soon.

Love, Barb

[Guest guest]

" ....With all the meds he is on, he should gain weight, but he is still loosing

a lot.... "

" ......The doc in SL upped the pred to 60mg a day and the methraxate

to 6 pills a week. The heavy dose of pred along should make him gain.

Now he has developed a severe reaction to anything that goes in his stomage.

Every time he eats or drinks anything, including water, he has severe pain.

Naturally, he does not like to eat anymore,....... "

Jenaka,

First, please don't be alarmed at the weight loss....it's " normal " during a

severe flare. The amount of weight that comes off is incredible, but once the

flare is over, it will come back (thanks to good 'ole prednisone....ughghghg).

I remember when I first got sick, I lost 40 lbs within a couple of weeks, and

kept loosing until the flare was over.

As for the stomach problems, it's " normal " with the high doses of

prednisone...one of the nasty side effects. It causes all kinds of gastric

issues. I am now taking nexium on a daily basis because of it. There are

times even with the nexium that I have to add tums or rolaids into my daily

habit. I have also found that the " old fashioned " remedy of water and baking

soda help. It tastes awful, but it works immediately. I stumbled across that

one night when at 2:00 a.m. I couldn't stand it anymore and went rummaging

through the kitchen to see what I could concoct to stop it. If he tries this,

just be forewarned.....for some odd reason, within a couple of minutes of

drinking it, you burp like crazy! (smile....)

It's terrible when your stomach hurts so bad that water hurts it, but hopefully

one of these may help.

Good luck and be strong!

Chris

greywolf70@...

[Guest guest]

Jenaka,

This is a shot in the dark, but you said any ideas were welcome. There was a

time when I was anorexic for a very long time. I had the same problem of food

making me sick and not staying down. It actually hurt when I ate and I too,

would nibble to humor those who loved me. I am NOT saying I had all the physical

ailments that Kim does that are causing the problem, I am just relating that I

was losing weight, had stomach pain and could not eat or keep things down. I had

gotten counselling and wanted to eat but couldn't. My doctor and I brainstormed

and came up with the idea of trying the transdermal patch for motion sickness.

Guess what? It worked. I could eat food and keep it down, no pain or nausea.

Gradually, I was able to handle more and more food.You have to start with bland,

no spice foods that you like... rice, potatoe, etc. Non acidic things. Until my

fun with Stills Disease drugs, my weight was in the average range. Don't know if

this will work for Kim or not, but it's worth a shot maybe. Sure hope it helps.

Caroline

DreamCatchers wrote:

Please, if anyone has an idea on how and what can be done, let me know!

We may not be able to change the direction of the wind, but we can adjust our

sails.

---------------------------------

[Guest guest]

Dear Jenaka,

please do not apologize for not being here on the site. We do know that you

are there, and at times, it is so hard to participate in conversations, but

to read the messages is very important I think. This is where we learn and

gain a lot of knowledge about Stills. We are always here for you and Kim.

I am so sorry that he is not doing well, and we will keep him in our

thoughts. I do know what he is going through. From my own experience, I

would usually lose a lot of weight during a " flare " and when I say " flare " ,

in my experience, it is one that was drastic enough to hospitalize me for

weeks like Kim. I would lose about 10-15 pounds at a time, and have NO

appetite at all. At the time of my last hospitalization, I was still with

an Oncology group and seeing my Infectious Disease Doctor. One of the

Oncology Doctors, would get mad at me, because I couldn't and wouldn't eat,

but I would completely lose my appetite. I could not handle any water at

all. One day I was trying to walk around the corridor at the nurses station

just to get my hips and legs some exercise, and I collapsed on the floor

with severe dry heaves. I was very sick, and I hadn't eaten anything in

days. All I had was some water. They tried and tried to press the food

upon me, but the more they forced it, the more I refused. All the

medication was so hard on my stomach, that I just could not stomach the

medications. I was highly upset when the Oncology doctor started throwing

out on me, that I was " depressed " and that was the reason why I was not

eating. This " floored " me very much and I got very angry. No matter how

hard I tried to convince them that I was not " depressed " , and that I was in

severe pain, and had no interest in food because my stomach could not handle

it, they just wouldn't believe anything that I had to say. I don't know for

the life of me, why these doctors just cannot believe us when we tell them

something. Finally they sent in a nutritionist and she actually brought in

a whole box load of the drink " ENSURE " . Each day, I would have to drink 3

cans of this stuff. It was pretty good, and it was suppose to help me be

healthy and put some weight on. I would ask his doctor about it. The

hospitals seem to use it a lot, and at times I could handle this in my

stomach. Another time when I was hospitalized, they actually had some kind

of thickener that they put into my water. This at times, seem to prevent me

from throwing up. I really feel bad for Kim, because I can understand what

he is going through Jenaka. Even though I was on a lot of prednisone (80mg)

in the hospital and out of the hospital, I really didn't start gaining my

prednisone weight until several months later. My " flares " were so bad,

that I was actually bed ridden for two to three months at a time. It was

when I finally started to get my appetite back, that I started to put on

some weight. I know with Stills Disease, a drop of weight is a big factor,

and happens a lot, and the weight drop seems to happen very fast. Jenaka,

if possible, please let us know how Kim is doing. I am so sorry that he is

having a hard time. Please let him know that he is in our thoughts and we

are thinking about him. I know that this is very difficult for you also.

It is so hard to see someone suffer when you love them. We are always here

for you also. Be well friend.

Love, Sue #2

-- I need answers

Hello everyone,

I am sorry I do not write more often, but with Kim being so sick and me not

having any help around, I have very little time. I do try to read all the

messages and learn.

Kim spend 5 day's in Salt Lake City in the Hospital. They are trying to find

why he is so anemic and why he is still loosing weight. With all the meds

he is on, he should gain weight, but he is still loosing a lot. Down to

115lbs now. The doc in SL upped the pred to 60mg a day and the methraxate

to 6 pills a week. The heavy dose of pred along should make him gain.

Now he has developed a severe reaction to anything that goes in his stomage.

Every time he eats or drinks anything, including water, he has severe pain.

Naturally, he does not like to eat anymore, he humors me though and eats

some anyway. This is getting real scary for me and I need some answers.

Has anyone of you had those reactions to the meds or the disease? And what

was done for it? Kim has another apptmt. in Salt Lake on the 10th of this

month and if there is anything out there that could help him, I like to

present it to his doctors there. They are very good at listening and

following up on suggestions or studies. His reumatologist calls here at

least once a week to see how he is doing since we only get to see her every

3-4 weeks, and the other 5 or 6 specialists he gets to see there keep in

touch also to see if there is something that could be done.

Someone told me about a camara pill that goes through you and registeres

every 10 seconds, but I dont know how expansive this proceedure is and if

Medicare will pay for it, I will ask on the 1oth though.

Please, if anyone has an idea on how and what can be done, let me know!

Also, I like to appologize to the lady that send her Phone number for me to

call when I get in to the " City " . I lost it and can not find it. Please

send it again and I will call when we get to Utah. We generally stay over

with friends in Lehie for the night and it will be the same this time.

Thank you for listening to me.

Jenaka

[Guest guest]

Dear Jenaka,

I have experienced similar symptoms as Kim and like other people have

described. In my case the first time I had these problems I wasn't on any

meds so I believe it was the Stills Disease. I lost a lot of weight, I

didn't eat or drink much of anything, I couldn't keep anything down, I was

severely anemic and had terrible stomache pains.

In flares after this even when on a lot of meds and a high dose of

Prednisone I had similar symptoms. I don't remember exactly what all the

Doc's did. This was so long ago. I do remember them trying to push a lot

of fluids, increased my prednisone, put me on some stomache meds and one

time giving me a blood transfusion. I was pretty out of it.

I know this has got to be so difficult on both of you. I will be praying

for both of you. Let us know what happens.

Love,

jatw@...