RE: Just talked w/Ron about Deb

[Guest guest]

HI I just talked with Ron. Deb has been upgraded to very guarded from

critical.

Last week in the middle of the night (Tues-WED)they changed out her groshong

port as it was getting infected. This is where the infection came from this

time. She was off the antibiotics and most every other drug since the rash

.....the rash was just a weeping rash caused by long term use of some

med......her kidneys were not putting out much urine because the rash was

weeping so much.....the long term use of predisone has not helped her at all

.....leaving her open to all kinds of infections.

Her knee is fine....the other knee was checked many times during surgeries

for signs of infection. The infusions of Remicade lowered her immune system

so much and then surgery right after an infusion had something to do with

this. I am not here to say Remicade is bad...just if you are on it and

develop a cold, or repiratory infection, pls tell your dr, and if you need

surgery of any kind tell the drs......emphasize the fact you are on

it.......The study I was in would have you stop the remicade many weeks

before surgery and then not start you back on it till many weeks after. It is

a new drug....it is a marvelous new drug.....you can have a great life again

because of it.......but Deb and I both have discussed it many times and it

can cause sepsis in surgery .........

Deb is still comatose but I understand she floats in and out and is able to

move her head and eyelids and answer yes and no questions.....Ron said he

knows she will be in the hospital past Christmas and doesn't know how much

longer in ICU...he thinks at least another week.

The girls went back to school this morning.....and Deb's sister is flying

back home on Thursday . Ron is trying so hard to keep things " normal " at

home.....and he said he feels there is much improvement compared to Sunday.

Please continue to keep them all in your prayers.....Judy in AZ

[Guest guest]

Dear Judy, Thanks for the Debs update. I continue to

pray for her and her family. Iris

--- JHend65291@... wrote:

> HI I just talked with Ron. Deb has been upgraded to

> very guarded from

> critical.

>

> Last week in the middle of the night (Tues-WED)they

> changed out her groshong

> port as it was getting infected. This is where the

> infection came from this

> time. She was off the antibiotics and most every

> other drug since the rash

> ....the rash was just a weeping rash caused by long

> term use of some

> med......her kidneys were not putting out much urine

> because the rash was

> weeping so much.....the long term use of predisone

> has not helped her at all

> ....leaving her open to all kinds of infections.

>

> Her knee is fine....the other knee was checked many

> times during surgeries

> for signs of infection. The infusions of Remicade

> lowered her immune system

> so much and then surgery right after an infusion had

> something to do with

> this. I am not here to say Remicade is bad...just if

> you are on it and

> develop a cold, or repiratory infection, pls tell

> your dr, and if you need

> surgery of any kind tell the drs......emphasize the

> fact you are on

> it.......The study I was in would have you stop the

> remicade many weeks

> before surgery and then not start you back on it

> till many weeks after. It is

> a new drug....it is a marvelous new drug.....you can

> have a great life again

> because of it.......but Deb and I both have

> discussed it many times and it

> can cause sepsis in surgery .........

>

> Deb is still comatose but I understand she floats in

> and out and is able to

> move her head and eyelids and answer yes and no

> questions.....Ron said he

> knows she will be in the hospital past Christmas and

> doesn't know how much

> longer in ICU...he thinks at least another week.

>

> The girls went back to school this morning.....and

> Deb's sister is flying

> back home on Thursday . Ron is trying so hard to

> keep things " normal " at

> home.....and he said he feels there is much

> improvement compared to Sunday.

> Please continue to keep them all in your

> prayers.....Judy in AZ

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

In a message dated 12/10/02 12:00:52 PM Central Standard Time,

Matsumura_Clan@... writes:

> I agree that we all have to be careful with Remicade. Since it has such

> a long half-life

what do you mean by this gina. i know i had a mass of infections after my

surgeries. i had my infusions in may and my surgeries were in august and

october. i had infections after each surgery and i had to take about 3 weeks

of antibiotics. it also sparked up an old infectious disease that the health

dept had a meeting on. they were afraid to treat me and was sent to the head

of the health dept for treatment. i am trying methotrexate now and decided

to keep trying it, but to be honest if i would had read about deb firsti

would've told my dr to forget it!!!! i am also praying for debs and her

family. kathy in il

[Guest guest]

Thanks, so much for the update, Judy. I'm so glad to hear that Deb

continues to improve, albeit slowly. I really feel for Ron and the kids.

Ron is such a wonderful man. Her kids are great, too. I have to honestly

say that I don't think my husband would be as kind and supportive as Ron is

if I were in the same position. Nonetheless, this has to be really hard for

all of them.

I'll call this afternoon so I can get another update.

Love and hugs,

Carol

Re: [ ] Just talked w/Ron about Deb

HI I just talked with Ron. Deb has been upgraded to very guarded from

critical.

Last week in the middle of the night (Tues-WED)they changed out her groshong

port as it was getting infected. This is where the infection came from this

time. She was off the antibiotics and most every other drug since the rash

.....the rash was just a weeping rash caused by long term use of some

med......her kidneys were not putting out much urine because the rash was

weeping so much.....the long term use of predisone has not helped her at all

.....leaving her open to all kinds of infections.

Her knee is fine....the other knee was checked many times during surgeries

for signs of infection. The infusions of Remicade lowered her immune system

so much and then surgery right after an infusion had something to do with

this. I am not here to say Remicade is bad...just if you are on it and

develop a cold, or repiratory infection, pls tell your dr, and if you need

surgery of any kind tell the drs......emphasize the fact you are on

it.......The study I was in would have you stop the remicade many weeks

before surgery and then not start you back on it till many weeks after. It

is

a new drug....it is a marvelous new drug.....you can have a great life again

because of it.......but Deb and I both have discussed it many times and it

can cause sepsis in surgery .........

Deb is still comatose but I understand she floats in and out and is able to

move her head and eyelids and answer yes and no questions.....Ron said he

knows she will be in the hospital past Christmas and doesn't know how much

longer in ICU...he thinks at least another week.

The girls went back to school this morning.....and Deb's sister is flying

back home on Thursday . Ron is trying so hard to keep things " normal " at

home.....and he said he feels there is much improvement compared to Sunday.

Please continue to keep them all in your prayers.....Judy in AZ

[Guest guest]

Thank you dear Judy! Let's all kepp praying for every little wondrous,

positive step toward health for our Debs.

All My Love...

Tess

[Guest guest]

Thanks for the update on Debs, Judy. This report is pretty good. I'm

feeling less nervous about her condition, but still very concerned. I

hope they have looked at that left knee again sometime in the last

couple of days. Thank you in advance for keeping us posted.

About the Remicade ...

Debs had the surgery to repair her patella on August 8th. The knee did

not seem to be healing well as she reported several episodes of

hemorrhaging and swelling and pain in the days immediately after that

surgery. Despite the fact that the prior few days did not go well and

that there was swelling and oozing present on August 15th when she saw

her ortho, Debs received her Remicade infusion on August 16th. Friday,

August 23rd, Debs again had severe swelling of the knee and was running

a temp, yet the ortho said he wanted to see if she could make it without

antibiotics until Monday since he wanted to spare her already-irritated

GI tract. That Friday night she goes to the ER and is hospitalized with

sepsis.

I am pretty sure that Remicade didn't have much to do with the problems

that she experienced from August 8th through August 16th (since the

prior infusion probably would have been sometime in June and Debs

herself had commented that she believed it was wearing off after 6

weeks). Whoever OKed the infusion on the 16th shares a big part of the

responsibility for her sepsis and hospitalization on the 23rd. But I

also don't understand why in the world Ortho Man wouldn't have started

her on IV antibiotics when the fever began (if not before).

In addition, at least one of her physicians, past and/or present,

believes Debs has lupus. If Debs does have lupus, I'm not sure she

should have ever been on Remicade (and previously Enbrel) in the first

place.

I agree that we all have to be careful with Remicade. Since it has such

a long half-life, the choice to have an infusion has to be made

cautiously and any complications that arise should be examined closely.

Re: [ ] Just talked w/Ron about Deb

> HI I just talked with Ron. Deb has been upgraded to very guarded from

> critical.

>

> Last week in the middle of the night (Tues-WED)they changed out her

groshong

> port as it was getting infected. This is where the infection came from

this

> time. She was off the antibiotics and most every other drug since the

rash

> ....the rash was just a weeping rash caused by long term use of some

> med......her kidneys were not putting out much urine because the rash

was

> weeping so much.....the long term use of predisone has not helped her

at all

> ....leaving her open to all kinds of infections.

>

> Her knee is fine....the other knee was checked many times during

surgeries

> for signs of infection. The infusions of Remicade lowered her immune

system

> so much and then surgery right after an infusion had something to do

with

> this. I am not here to say Remicade is bad...just if you are on it and

> develop a cold, or repiratory infection, pls tell your dr, and if you

need

> surgery of any kind tell the drs......emphasize the fact you are on

> it.......The study I was in would have you stop the remicade many

weeks

> before surgery and then not start you back on it till many weeks

after. It is

> a new drug....it is a marvelous new drug.....you can have a great life

again

> because of it.......but Deb and I both have discussed it many times

and it

> can cause sepsis in surgery .........

>

> Deb is still comatose but I understand she floats in and out and is

able to

> move her head and eyelids and answer yes and no questions.....Ron said

he

> knows she will be in the hospital past Christmas and doesn't know how

much

> longer in ICU...he thinks at least another week.

>

> The girls went back to school this morning.....and Deb's sister is

flying

> back home on Thursday . Ron is trying so hard to keep things " normal "

at

> home.....and he said he feels there is much improvement compared to

Sunday.

> Please continue to keep them all in your prayers.....Judy in AZ

[Guest guest]

Hello there , I am Bobbie and not posting a lot generally because I

rather read from the others testimonies etc. But this time, I would like

to check with you guys if any of you guys who have RA had a Bakers' Cyst

in their knees or somewhere else because I have a big one in my right

knee since last August and now finally after many visits to many

orthopedic surgeons by my rheumatologist it will be operated on and

taken out early next year depending on the availability of the operating

rooms. Does anybody have that kind of experience to share with me? I

will be awaiting your replies. Bobbie of Montreal, Quebec, Canada.

Re: [ ] Just talked w/Ron about Deb

Thank you dear Judy! Let's all kepp praying for every little wondrous,

positive step toward health for our Debs.

All My Love...

Tess