Re: ? about Remicade/woahs-prayers needed

[Guest guest]

You are in our prayers. (n, 17, systemic)

On Sep 11, 2006, at 1:53 PM, bound for london wrote:

> Just returning from rheumy appt. Due to continued difficulties on

> Enbrel and too much joint activity even with Enbrel, Pred, MTX,

> Plaquenil, Celebrex, etc we are switching to Remicade. Rheumy feels

> if you fail Enbrel you will fail Humira. New drug out with infusion

> once every 9 months but if it doesn't work, what do you do with 9

> months of drug in you? So, going to Remicade. Big problem is that

> joe heads to school in two weeks so trying to rush insurance

> approval to have first infusion by Friday and second in two weeks.

> So, pros out there, tell us what to expect with it please. The

> good, the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been in

> Utah taking care of grandma. Awaiting results, but drs believe she

> has stomach cancer-likely terminal for 84 year old who weighs less

> than 90-lbs. Nephew, age 18, ran a stop sign Saturday night and not

> sure if he is going to make it. First they told his folks expect

> him in ICU for a couple days observation, then to general room for

> a week. Unfortunately things have gone from bad to worse. He has a

> fractured pelvis and hip, surgically repaired. Ruptured spleen,

> they removed. Lung now collapsed, chest tube. Needed major

> transfusions. Brain swelling last night, in surgery much of night.

> He is not responding and his brain pressure (?) is increasing. He

> is on a ventilator and at this time we don't know if he is going to

> survive or not. He and his family live in Missippi and none of the

> rest of the family do. So, if you can add to your prayers we

> would appreciate it. Amazing how in an instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

My goodness, Your post makes me think that my life is easy or at

least my burdens are far more easier to deal with. :-( So sorry to

hear about your grandma. Will she remain in Utah or are you in the

midst of working out caregiving plans too?

I certainly will be in prayer for your nephew and for his family!

Joe, certainly has had a difficult summer hasn't she. Its hard to

believe that with all those meds that she has been on that she is

still having so many problems. Will they keep her on everything

else and just switch enbrel to remicade? I don't have any personal

experience with remicade but my sister was treated with it for

awhile for chrones disease. She said it helped a great deal with

her joint pain and that she would usually feel good for a month or

two. Her greatest troubles were extreme fatigue following the

infusion. It would just wipe her out! She is in her 20's and I

don't know if adults respond differently to it or if it was just

her. Seems like fatigue hasn't been mentioned as much from others

on the list. I know that Nick and Caroline have both recived

remicade infusions and I am sure there are others on the list as

well.

My sister developed an allergic reaction to the remicade. She had

major breathing problems...They treated her for that but the

following infusion was even worse and all of her muscles

contracted. I guess it was pretty scary for her and the doctors

refused to try it anymore. She was disappointed because it had been

a really good med for her as far as treating her disease and helping

her joints.

I hope that you can really get that insurance company to speed

things up so that Jo can get the first infusion soon. Tell her to

be prepared to need to have a day or two to recouperate...Hopefully

a lighter schedule for a couple days after the infusion at least as

an option in case its needed.

I will keep all of you in my prayers.

(Aundrea 11 systemic jra)

>

> Just returning from rheumy appt. Due to continued difficulties on

Enbrel and too much joint activity even with Enbrel, Pred, MTX,

Plaquenil, Celebrex, etc we are switching to Remicade. Rheumy feels

if you fail Enbrel you will fail Humira. New drug out with infusion

once every 9 months but if it doesn't work, what do you do with 9

months of drug in you? So, going to Remicade. Big problem is that

joe heads to school in two weeks so trying to rush insurance

approval to have first infusion by Friday and second in two weeks.

So, pros out there, tell us what to expect with it please. The good,

the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been

in Utah taking care of grandma. Awaiting results, but drs believe

she has stomach cancer-likely terminal for 84 year old who weighs

less than 90-lbs. Nephew, age 18, ran a stop sign Saturday night and

not sure if he is going to make it. First they told his folks expect

him in ICU for a couple days observation, then to general room for a

week. Unfortunately things have gone from bad to worse. He has a

fractured pelvis and hip, surgically repaired. Ruptured spleen, they

removed. Lung now collapsed, chest tube. Needed major transfusions.

Brain swelling last night, in surgery much of night. He is not

responding and his brain pressure (?) is increasing. He is on a

ventilator and at this time we don't know if he is going to survive

or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would

appreciate it. Amazing how in an instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

e:

We are sending prayers for you, Joe, your grandma & your nephew.

bound for london <boundforlondon@...> wrote:

Just returning from rheumy appt. Due to continued difficulties on

Enbrel and too much joint activity even with Enbrel, Pred, MTX, Plaquenil,

Celebrex, etc we are switching to Remicade. Rheumy feels if you fail Enbrel you

will fail Humira. New drug out with infusion once every 9 months but if it

doesn't work, what do you do with 9 months of drug in you? So, going to

Remicade. Big problem is that joe heads to school in two weeks so trying to rush

insurance approval to have first infusion by Friday and second in two weeks. So,

pros out there, tell us what to expect with it please. The good, the bad and the

ugly.

As for woahs, computer crashed so checking in at library. Been in Utah taking

care of grandma. Awaiting results, but drs believe she has stomach cancer-likely

terminal for 84 year old who weighs less than 90-lbs. Nephew, age 18, ran a stop

sign Saturday night and not sure if he is going to make it. First they told his

folks expect him in ICU for a couple days observation, then to general room for

a week. Unfortunately things have gone from bad to worse. He has a fractured

pelvis and hip, surgically repaired. Ruptured spleen, they removed. Lung now

collapsed, chest tube. Needed major transfusions. Brain swelling last night, in

surgery much of night. He is not responding and his brain pressure (?) is

increasing. He is on a ventilator and at this time we don't know if he is going

to survive or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would appreciate it.

Amazing how in an instant your life can

be totally changed.

e, mom to joe 19 poly + lupus

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

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

My son has been on Remicade for over 2 years now. It usually lasts almost 3

hours, so he brings his portable DVD player. He has a Benadryl shot and then

Tylenol just before the infusion. He has never had any problems with it. He

can't eat before the infusion, so he is very hungry when it is over. The nurses

take his temperature and bloodpressure every 15 minutes to monitor the effects.

I hope everything goes well. I am so sorry to hear about your family. My gosh,

how much you have to go through at one time. I will definately keep all of you

in my prayers.

Deadra and Chase 8 pauci and uveitis

bound for london <boundforlondon@...> wrote:

Just returning from rheumy appt. Due to continued difficulties on

Enbrel and too much joint activity even with Enbrel, Pred, MTX, Plaquenil,

Celebrex, etc we are switching to Remicade. Rheumy feels if you fail Enbrel you

will fail Humira. New drug out with infusion once every 9 months but if it

doesn't work, what do you do with 9 months of drug in you? So, going to

Remicade. Big problem is that joe heads to school in two weeks so trying to rush

insurance approval to have first infusion by Friday and second in two weeks. So,

pros out there, tell us what to expect with it please. The good, the bad and the

ugly.

As for woahs, computer crashed so checking in at library. Been in Utah taking

care of grandma. Awaiting results, but drs believe she has stomach cancer-likely

terminal for 84 year old who weighs less than 90-lbs. Nephew, age 18, ran a stop

sign Saturday night and not sure if he is going to make it. First they told his

folks expect him in ICU for a couple days observation, then to general room for

a week. Unfortunately things have gone from bad to worse. He has a fractured

pelvis and hip, surgically repaired. Ruptured spleen, they removed. Lung now

collapsed, chest tube. Needed major transfusions. Brain swelling last night, in

surgery much of night. He is not responding and his brain pressure (?) is

increasing. He is on a ventilator and at this time we don't know if he is going

to survive or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would appreciate it.

Amazing how in an instant your life can

be totally changed.

e, mom to joe 19 poly + lupus

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

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

-kristine,

I have to start by sending up prayers for all your family members

that are struggling so much right now. I will pray for good news on

your nephew and a turn around in his condition and for peace and

many painfree months for your grandma to spend with her fmaily.

As you know Nick has been on remicade since Oct of last year. It

really has been wonderful for him and we have been blessed with NO

reactions at all. If I didnt know better i would be convinced they

were just putting water into his viens, it has that little negative

affect on him. We are blessed as I know so many struggle with side

effects.

He is pre-medicated with tylenol, benadryl and solumedrol, which

also have no affect on him. They usually start the infusions off at

a flow rate of 10 then increase to 20,40,80,160 and 250 every 15 to

30 mins. Nick is doing so well that i think we start at 80 and go up

from there now. We can get gone really quickly ))

He doesnt have any side effects afterwards except for lots of

engery, he doesnt have any tiredness following and just goes about

his day normally afterwards. I think it makes him feel so good that

hes happy to play and have lots of fun.

I hope you get approval quickly and Joe can get her treatments

underway. I hope that they work as quickly and easierly as they do

for .

Again, thoughts and prayers for your family.

hugs Helen and (9,systemic)

-- In , bound for london

<boundforlondon@...> wrote:

>

> Just returning from rheumy appt. Due to continued difficulties on

Enbrel and too much joint activity even with Enbrel, Pred, MTX,

Plaquenil, Celebrex, etc we are switching to Remicade. Rheumy feels

if you fail Enbrel you will fail Humira. New drug out with infusion

once every 9 months but if it doesn't work, what do you do with 9

months of drug in you? So, going to Remicade. Big problem is that

joe heads to school in two weeks so trying to rush insurance

approval to have first infusion by Friday and second in two weeks.

So, pros out there, tell us what to expect with it please. The good,

the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been

in Utah taking care of grandma. Awaiting results, but drs believe

she has stomach cancer-likely terminal for 84 year old who weighs

less than 90-lbs. Nephew, age 18, ran a stop sign Saturday night and

not sure if he is going to make it. First they told his folks expect

him in ICU for a couple days observation, then to general room for a

week. Unfortunately things have gone from bad to worse. He has a

fractured pelvis and hip, surgically repaired. Ruptured spleen, they

removed. Lung now collapsed, chest tube. Needed major transfusions.

Brain swelling last night, in surgery much of night. He is not

responding and his brain pressure (?) is increasing. He is on a

ventilator and at this time we don't know if he is going to survive

or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would

appreciate it. Amazing how in an instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

-Deadra,

Interesting that Chase cannot eat before his infusions. Is this

something the doctor has said or is it just that Chase would get

sick if he ate. I ask because we have never been told Nick cannot

eat and he eats like a horse before, during and after. At Children's

they actually bring him a menu and he loves to pick out lots of

goodies to eat while hes getting his infusion.

Hugs Helen and (9,systemic)

-- In , Deadra Dunbar

<fortheloveofmyson1998_5@...> wrote:

>

> My son has been on Remicade for over 2 years now. It usually lasts

almost 3 hours, so he brings his portable DVD player. He has a

Benadryl shot and then Tylenol just before the infusion. He has

never had any problems with it. He can't eat before the infusion, so

he is very hungry when it is over. The nurses take his temperature

and bloodpressure every 15 minutes to monitor the effects. I hope

everything goes well. I am so sorry to hear about your family. My

gosh, how much you have to go through at one time. I will definately

keep all of you in my prayers.

> Deadra and Chase 8 pauci and uveitis

>

> bound for london <boundforlondon@...> wrote:

> Just returning from rheumy appt. Due to continued

difficulties on Enbrel and too much joint activity even with Enbrel,

Pred, MTX, Plaquenil, Celebrex, etc we are switching to Remicade.

Rheumy feels if you fail Enbrel you will fail Humira. New drug out

with infusion once every 9 months but if it doesn't work, what do

you do with 9 months of drug in you? So, going to Remicade. Big

problem is that joe heads to school in two weeks so trying to rush

insurance approval to have first infusion by Friday and second in

two weeks. So, pros out there, tell us what to expect with it

please. The good, the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been in

Utah taking care of grandma. Awaiting results, but drs believe she

has stomach cancer-likely terminal for 84 year old who weighs less

than 90-lbs. Nephew, age 18, ran a stop sign Saturday night and not

sure if he is going to make it. First they told his folks expect him

in ICU for a couple days observation, then to general room for a

week. Unfortunately things have gone from bad to worse. He has a

fractured pelvis and hip, surgically repaired. Ruptured spleen, they

removed. Lung now collapsed, chest tube. Needed major transfusions.

Brain swelling last night, in surgery much of night. He is not

responding and his brain pressure (?) is increasing. He is on a

ventilator and at this time we don't know if he is going to survive

or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would

appreciate it. Amazing how in an instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

Grandma lives with her daughter, but she works full time so before school

started mid-week we went to spend time with her. They found a large mass in her

stomach and polyps. Doc figures cancer but even if not, he doesn't think she can

tolerate removal. We should know more by Wednesday. Wish we were closer to help

more (we're in Seattle area).

As for joe, you know how when you are overwhelmed already your mind doesn't

think so straight? Well, on top of that, I forgot to put my note pad in. So, not

thinking straight at all. We asked about meds and she mentioned stopping the

Enbrel today to get it out of her system by the time of infusion. Also mentioned

how critical it was to stay on mtx. But then afterwards we are wondering about

the Plaquenil since it has done nothing. Need to call her tomorrow. I wonder how

she is going to do with it too. She is exhausted all the time, so I would not be

surprised if she is more exhausted afterwards. We'll see. Thanks for the info.

Oh and the rheumy did mention chest pain as being common during infusion. Sorry

to hear it didn't work for your sister. Bummer when something helps but you can

not tolerate. That is me and Benadryl. It helps but knocks me flat on my rear

even with a 1/4 of one adult tab. We'll proably have to try for Fridays because

of college classes. Nice thing is

she said if she tolerates it well, she may move to once every 8 weeks

eventually. Let's hope so.

Did Aundrea make it to school today? I hope she is moving out of the flare and

back to doing all she desires!

e

sonia1md <sonia1md@...> wrote:

My goodness, Your post makes me think that my life is easy or at

least my burdens are far more easier to deal with. :-( So sorry to

hear about your grandma. Will she remain in Utah or are you in the

midst of working out caregiving plans too?

I certainly will be in prayer for your nephew and for his family!

Joe, certainly has had a difficult summer hasn't she. Its hard to

believe that with all those meds that she has been on that she is

still having so many problems. Will they keep her on everything

else and just switch enbrel to remicade? I don't have any personal

experience with remicade but my sister was treated with it for

awhile for chrones disease. She said it helped a great deal with

her joint pain and that she would usually feel good for a month or

two. Her greatest troubles were extreme fatigue following the

infusion. It would just wipe her out! She is in her 20's and I

don't know if adults respond differently to it or if it was just

her. Seems like fatigue hasn't been mentioned as much from others

on the list. I know that Nick and Caroline have both recived

remicade infusions and I am sure there are others on the list as

well.

My sister developed an allergic reaction to the remicade. She had

major breathing problems...They treated her for that but the

following infusion was even worse and all of her muscles

contracted. I guess it was pretty scary for her and the doctors

refused to try it anymore. She was disappointed because it had been

a really good med for her as far as treating her disease and helping

her joints.

I hope that you can really get that insurance company to speed

things up so that Jo can get the first infusion soon. Tell her to

be prepared to need to have a day or two to recouperate...Hopefully

a lighter schedule for a couple days after the infusion at least as

an option in case its needed.

I will keep all of you in my prayers.

(Aundrea 11 systemic jra)

>

> Just returning from rheumy appt. Due to continued difficulties on

Enbrel and too much joint activity even with Enbrel, Pred, MTX,

Plaquenil, Celebrex, etc we are switching to Remicade. Rheumy feels

if you fail Enbrel you will fail Humira. New drug out with infusion

once every 9 months but if it doesn't work, what do you do with 9

months of drug in you? So, going to Remicade. Big problem is that

joe heads to school in two weeks so trying to rush insurance

approval to have first infusion by Friday and second in two weeks.

So, pros out there, tell us what to expect with it please. The good,

the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been

in Utah taking care of grandma. Awaiting results, but drs believe

she has stomach cancer-likely terminal for 84 year old who weighs

less than 90-lbs. Nephew, age 18, ran a stop sign Saturday night and

not sure if he is going to make it. First they told his folks expect

him in ICU for a couple days observation, then to general room for a

week. Unfortunately things have gone from bad to worse. He has a

fractured pelvis and hip, surgically repaired. Ruptured spleen, they

removed. Lung now collapsed, chest tube. Needed major transfusions.

Brain swelling last night, in surgery much of night. He is not

responding and his brain pressure (?) is increasing. He is on a

ventilator and at this time we don't know if he is going to survive

or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would

appreciate it. Amazing how in an instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

Thanks. The docs are telling us the next 24 hours are critical to see how his

brain responds to the surgery. They removed three large clots from his brain

last night.

e

Price <bc.price@...> wrote:

You are in our prayers. (n, 17, systemic)

On Sep 11, 2006, at 1:53 PM, bound for london wrote:

> Just returning from rheumy appt. Due to continued difficulties on

> Enbrel and too much joint activity even with Enbrel, Pred, MTX,

> Plaquenil, Celebrex, etc we are switching to Remicade. Rheumy feels

> if you fail Enbrel you will fail Humira. New drug out with infusion

> once every 9 months but if it doesn't work, what do you do with 9

> months of drug in you? So, going to Remicade. Big problem is that

> joe heads to school in two weeks so trying to rush insurance

> approval to have first infusion by Friday and second in two weeks.

> So, pros out there, tell us what to expect with it please. The

> good, the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been in

> Utah taking care of grandma. Awaiting results, but drs believe she

> has stomach cancer-likely terminal for 84 year old who weighs less

> than 90-lbs. Nephew, age 18, ran a stop sign Saturday night and not

> sure if he is going to make it. First they told his folks expect

> him in ICU for a couple days observation, then to general room for

> a week. Unfortunately things have gone from bad to worse. He has a

> fractured pelvis and hip, surgically repaired. Ruptured spleen,

> they removed. Lung now collapsed, chest tube. Needed major

> transfusions. Brain swelling last night, in surgery much of night.

> He is not responding and his brain pressure (?) is increasing. He

> is on a ventilator and at this time we don't know if he is going to

> survive or not. He and his family live in Missippi and none of the

> rest of the family do. So, if you can add to your prayers we

> would appreciate it. Amazing how in an instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

Thanks. Tomorrow should tell us more about the nephew and Wednesday for Grandma.

We appreciate all the prayers.

e

Beth Yohnk <yohnkmom@...> wrote:

e:

We are sending prayers for you, Joe, your grandma & your nephew.

bound for london <boundforlondon@...> wrote:

Just returning from rheumy appt. Due to continued difficulties on Enbrel and too

much joint activity even with Enbrel, Pred, MTX, Plaquenil, Celebrex, etc we are

switching to Remicade. Rheumy feels if you fail Enbrel you will fail Humira. New

drug out with infusion once every 9 months but if it doesn't work, what do you

do with 9 months of drug in you? So, going to Remicade. Big problem is that joe

heads to school in two weeks so trying to rush insurance approval to have first

infusion by Friday and second in two weeks. So, pros out there, tell us what to

expect with it please. The good, the bad and the ugly.

As for woahs, computer crashed so checking in at library. Been in Utah taking

care of grandma. Awaiting results, but drs believe she has stomach cancer-likely

terminal for 84 year old who weighs less than 90-lbs. Nephew, age 18, ran a stop

sign Saturday night and not sure if he is going to make it. First they told his

folks expect him in ICU for a couple days observation, then to general room for

a week. Unfortunately things have gone from bad to worse. He has a fractured

pelvis and hip, surgically repaired. Ruptured spleen, they removed. Lung now

collapsed, chest tube. Needed major transfusions. Brain swelling last night, in

surgery much of night. He is not responding and his brain pressure (?) is

increasing. He is on a ventilator and at this time we don't know if he is going

to survive or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would appreciate it.

Amazing how in an instant your life can

be totally changed.

e, mom to joe 19 poly + lupus

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

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Deadra,

Interesting about the eating. She didn't tell us that. In fact, I don't know

anything other than to call on Wednesday if we haven't heard anything. Would

have been nice to have a handout or something. Now that I have my computer back

and hooked up, I'll be reading the Remicade site. She'll probably just nap if

all goes well. Or do her reading homework. Glad to hear that Chase tolerates it

well. We will hope for the same. As for the family, no new updates. We hope

tomorrow brings us better news.

e

Deadra Dunbar <fortheloveofmyson1998_5@...> wrote:

My son has been on Remicade for over 2 years now. It usually lasts

almost 3 hours, so he brings his portable DVD player. He has a Benadryl shot and

then Tylenol just before the infusion. He has never had any problems with it. He

can't eat before the infusion, so he is very hungry when it is over. The nurses

take his temperature and bloodpressure every 15 minutes to monitor the effects.

I hope everything goes well. I am so sorry to hear about your family. My gosh,

how much you have to go through at one time. I will definately keep all of you

in my prayers.

Deadra and Chase 8 pauci and uveitis

bound for london <boundforlondon@...> wrote:

Just returning from rheumy appt. Due to continued difficulties on Enbrel and too

much joint activity even with Enbrel, Pred, MTX, Plaquenil, Celebrex, etc we are

switching to Remicade. Rheumy feels if you fail Enbrel you will fail Humira. New

drug out with infusion once every 9 months but if it doesn't work, what do you

do with 9 months of drug in you? So, going to Remicade. Big problem is that joe

heads to school in two weeks so trying to rush insurance approval to have first

infusion by Friday and second in two weeks. So, pros out there, tell us what to

expect with it please. The good, the bad and the ugly.

As for woahs, computer crashed so checking in at library. Been in Utah taking

care of grandma. Awaiting results, but drs believe she has stomach cancer-likely

terminal for 84 year old who weighs less than 90-lbs. Nephew, age 18, ran a stop

sign Saturday night and not sure if he is going to make it. First they told his

folks expect him in ICU for a couple days observation, then to general room for

a week. Unfortunately things have gone from bad to worse. He has a fractured

pelvis and hip, surgically repaired. Ruptured spleen, they removed. Lung now

collapsed, chest tube. Needed major transfusions. Brain swelling last night, in

surgery much of night. He is not responding and his brain pressure (?) is

increasing. He is on a ventilator and at this time we don't know if he is going

to survive or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would appreciate it.

Amazing how in an instant your life can

be totally changed.

e, mom to joe 19 poly + lupus

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

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Helen,

She'll love it if she gets more energy. The part that bugs me, and it is the

least of my worries, is that for 2 years they waffled at Children's about

putting her on it and even wanted to remove some meds because " she was doing so

well " when it was obvious that she wasn't. Her new rheumy was disappointed with

the amount of lack of control she has and the frequency of being in a wheelchair

over the summer, or asleep etc. Oh well, I can't change it. Just irritating.

We'll hope she does as well as Nick. As for the rest of the family, thanks. We

are hopeful and nervously waiting news. Each time I answer the cell phone it

gets worse. So, we are scared and worried and feel utterly helpless. Makes you

want to jump on a plane but there is nothing we can do to make things different

but pray and hope. Thanks for the insight. The doc wants her in by Friday

because her joints are a mess. So keep your fingers crossed!

e

hburger64 <hburger64@...> wrote:

-kristine,

I have to start by sending up prayers for all your family members

that are struggling so much right now. I will pray for good news on

your nephew and a turn around in his condition and for peace and

many painfree months for your grandma to spend with her fmaily.

As you know Nick has been on remicade since Oct of last year. It

really has been wonderful for him and we have been blessed with NO

reactions at all. If I didnt know better i would be convinced they

were just putting water into his viens, it has that little negative

affect on him. We are blessed as I know so many struggle with side

effects.

He is pre-medicated with tylenol, benadryl and solumedrol, which

also have no affect on him. They usually start the infusions off at

a flow rate of 10 then increase to 20,40,80,160 and 250 every 15 to

30 mins. Nick is doing so well that i think we start at 80 and go up

from there now. We can get gone really quickly ))

He doesnt have any side effects afterwards except for lots of

engery, he doesnt have any tiredness following and just goes about

his day normally afterwards. I think it makes him feel so good that

hes happy to play and have lots of fun.

I hope you get approval quickly and Joe can get her treatments

underway. I hope that they work as quickly and easierly as they do

for .

Again, thoughts and prayers for your family.

hugs Helen and (9,systemic)

-- In , bound for london

<boundforlondon@...> wrote:

>

> Just returning from rheumy appt. Due to continued difficulties on

Enbrel and too much joint activity even with Enbrel, Pred, MTX,

Plaquenil, Celebrex, etc we are switching to Remicade. Rheumy feels

if you fail Enbrel you will fail Humira. New drug out with infusion

once every 9 months but if it doesn't work, what do you do with 9

months of drug in you? So, going to Remicade. Big problem is that

joe heads to school in two weeks so trying to rush insurance

approval to have first infusion by Friday and second in two weeks.

So, pros out there, tell us what to expect with it please. The good,

the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been

in Utah taking care of grandma. Awaiting results, but drs believe

she has stomach cancer-likely terminal for 84 year old who weighs

less than 90-lbs. Nephew, age 18, ran a stop sign Saturday night and

not sure if he is going to make it. First they told his folks expect

him in ICU for a couple days observation, then to general room for a

week. Unfortunately things have gone from bad to worse. He has a

fractured pelvis and hip, surgically repaired. Ruptured spleen, they

removed. Lung now collapsed, chest tube. Needed major transfusions.

Brain swelling last night, in surgery much of night. He is not

responding and his brain pressure (?) is increasing. He is on a

ventilator and at this time we don't know if he is going to survive

or not. He and his family live in Missippi and none of the rest of

the family do. So, if you can add to your prayers we would

appreciate it. Amazing how in an instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>

[Guest guest]

Sorry to hear about your family. Hope everything turns out ok, and

I'll be thinking of you.

As for remicade, my son had a bad allergic reaction to it. Extreme

vomiting, breathing problems, his lips turned puffy -- pretty scary,

but no need to go to the ER. But, the doctor said this is very rare.

In fact, she had never seen this happen before. He won't be able to do

remicade any more. It turns out he was allergic to the mouse protein.

I'm glad so many other kids have done so well with it. I hope it goes

well for you too.

Andy (8, psoriatic)

On 9/11/06, bound for london <boundforlondon@...> wrote:

>

>

>

>

>

>

> Just returning from rheumy appt. Due to continued difficulties on Enbrel and

> too much joint activity even with Enbrel, Pred, MTX, Plaquenil, Celebrex,

> etc we are switching to Remicade. Rheumy feels if you fail Enbrel you will

> fail Humira. New drug out with infusion once every 9 months but if it

> doesn't work, what do you do with 9 months of drug in you? So, going to

> Remicade. Big problem is that joe heads to school in two weeks so trying to

> rush insurance approval to have first infusion by Friday and second in two

> weeks. So, pros out there, tell us what to expect with it please. The good,

> the bad and the ugly.

>

> As for woahs, computer crashed so checking in at library. Been in Utah

> taking care of grandma. Awaiting results, but drs believe she has stomach

> cancer-likely terminal for 84 year old who weighs less than 90-lbs. Nephew,

> age 18, ran a stop sign Saturday night and not sure if he is going to make

> it. First they told his folks expect him in ICU for a couple days

> observation, then to general room for a week. Unfortunately things have gone

> from bad to worse. He has a fractured pelvis and hip, surgically repaired.

> Ruptured spleen, they removed. Lung now collapsed, chest tube. Needed major

> transfusions. Brain swelling last night, in surgery much of night. He is not

> responding and his brain pressure (?) is increasing. He is on a ventilator

> and at this time we don't know if he is going to survive or not. He and his

> family live in Missippi and none of the rest of the family do. So, if you

> can add to your prayers we would appreciate it. Amazing how in an

> instant your life can

> be totally changed.

>

> e, mom to joe 19 poly + lupus

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>