Re: New to the Group & Rituxan question

[Guest guest]

>hi erin,my name is melynda.im 38yrs.young & have ra as well.i have

never taken rituxin but i am on some that you listed.my response is

to trying to get an iv in my veins.i to am a hard stick,what exactly

is it that they put on you?curious in corpus

christi,tx.melyndagamez@...>wrote:

> Hi..

> My name is & I am 27. I have been living with RA since I was

> 16. I have been on so many different meds & they either don't work

> at all, or just give temporary relief. I believe in the begining

> they started me on Naprosyn & a low dosage of Prednisone. The RA

> progressed and throughout the next 2 yrs I developed limitations in

> my knee & elbows. Now, I can't straighten any of them..they are

> permanently bent. Over the years, I have tried many different

> meds. I have been on Celebrex, MTX (which caused a 10 days long

> hospital visit from drug induced hepatitis), Plaquenil, Enbrel & Im

> sure a few others Im forgetting. All of which I haven't had any

> major results from. I am currently on Arava, Prednisone 10 mg,

> Cymbalta for the depression that comes along with this, and now

> Rituxan. My Rhuematologisy just put me in a study to see how the

> Rituxan will help. I had to have a PICC line put in because my

> veins are really bad. And nobody can ever stick me for an IV. I

> actually just finished my 2nd infusion today. So far, so good-

with

> the side effects. The dr says it generally takes about 1 mth to

see

> any results. I have never really talked to anyone else about

having

> RA. I don't know anyone in my area that has it. So I was

wondering

> if anyone else has been on Rituxan that has had any (good or bad)

> results.

>

[Guest guest]

Hi Melynda,

Well for the rituxan infusions in my area, they sent me to Florida

Hospital's Cancer Center. They have a great oncology office there

that is all set up to give the Rituxan. But when I went in for my

consult with that Dr, he said that I only had 1 good vein & didn't

want to chance it for the nurses there in case anything happened.

So he was like I'm going to schedule you for a PICC line. I was

like ok, but nothing more was mentioned to me. So I had it

scheduled for the day before my first infusion. So, I was curious

what exactly this PICC line was. I looked online & researched it.

Well, basically it is a catheter that goes into a major vein in your

upper arm. They actually locate it with a ultrasound. So they know

where to find a good one. This tube goes in your arm & feeds to a

chamber that sits right about your heart. Immediately when I saw

that my heart was involved I had a slight panic attack. So I went

in for the procedure & they have a special IV that handles it. So I

felt better knowing they do this procedure day in & day out. They

give you shots of lanocaid (I believe- its basically the same type

of numbing stuff they give you at the Dentist's office). I thought

for sure it would hurt really bad. It didn't though. You just

basically feel pressure while they are feeding the tube in. After

everything is cleaned up, the bandage area is probably 3 inches long

& 4 inces wide..The tube comes out but is sealed up with a clear

bandadge so you can see the placement of the tube & make sure it

doesn't get infected. Then the tube comes out of the top of the

bandage and has 2 IV connectors that are taped onto the bandage

itself. After they finish, they have you go have a chest xray to

make sure it is in place. After some debate between the radiologist

& the IV team, they sent me home & said the placement would be

fine. The radiologist was thinking it may have been a bit too

long. Well, on a side note, if you ever get one of these, you

probably want to set aside a good 5 hr timeframe. I walked in there

thinking this was going to be a quick thing. Not the case. Which

is fine, I would rather them take their time, especially with some

tubing feeding down to my heart. But while I was there, my heart

started fluttering. This had never happened to me all my life. I

figured it was just because the tube was settling in. Over the next

few days, these flutterings got more frequent, especially while I

was trying to go to sleep. At points, it felt like my heart was

jumping everywhere & out of my chest. I told the nurses at my appt

the next day, but of coarse it didn't do it while I was there. But

it seemed the minute I got in the car to leave, it started again. I

waited until the next day & I called & left a message for the

nurse. She called back & told me to go to the Emergency Room asap

to have an EKG done. So I went. The EKG was fine. Over the lovely

12 hours I was there, I had another set of chest xrays done, blood

work, & a catscan. The dr let me know that my labs came back border

line adnormal, so he was thinking this was caused from a clot from

the PICC line. So when I went in for the cat scan, they used my

PICC for the IV (but after sticking me about 2 times and hitting

them, because the nurse didn't know they could just use the PICC).

They shot the catscan stuff in through the PICC, it was a very quick

infusion, not a drip like my Rituxan. So after that, I have not had

any other fultterings or palputations. It got a little frustrating

at the ER because it was like I kepting telling them over and over

this had to do with the PICC line. It was like they never heard me.

They kept thinking it was overload on caffeine or a chinese dinner

even had caused these. Neither of which occured. Anyhow, the

flutterings stopped which is good, but I got a call the other day

from my RA dr. He had gotten the results from my catscan & saw my

spleen was enlarged. So I am scheduled for another catscan next

week, to see if I have to have it removed. Sorry for the book. I

just wanted to let you know what exactly happened to me. I have to

have this in for another week. Its liveable, it just gets annoying,

because you have to go in for regular dressing changes. You have to

make sure you don't get it wet, so taking showers/ baths can get

interesting. Especially with a plactic shopping bag wrapped around

your arm. And the questions. It is defintely an eye opener on how

some people out there have no compassion. I get asked like 100

times a day " whats wrong with you " , " eww, what is that " , and looks

like I have an alien strapped on my arm. I've gotten used to it,

but I'm already very self conscious because I do walk with a limp

because of my knee problem. I hope this answers your questions

about it, and probably is a tad more info then you were looking

for :0)

> >hi erin,my name is melynda.im 38yrs.young & have ra as well.i

have

> never taken rituxin but i am on some that you listed.my response

is

> to trying to get an iv in my veins.i to am a hard stick,what

exactly

> is it that they put on you?curious in corpus

> christi,tx.melyndagamez@...>wrote:

> > Hi..

> > My name is & I am 27. I have been living with RA since I

was

> > 16. I have been on so many different meds & they either don't

work

> > at all, or just give temporary relief. I believe in the

begining

> > they started me on Naprosyn & a low dosage of Prednisone. The

RA

> > progressed and throughout the next 2 yrs I developed limitations

in

> > my knee & elbows. Now, I can't straighten any of them..they are

> > permanently bent. Over the years, I have tried many different

> > meds. I have been on Celebrex, MTX (which caused a 10 days long

> > hospital visit from drug induced hepatitis), Plaquenil, Enbrel &

Im

> > sure a few others Im forgetting. All of which I haven't had any

> > major results from. I am currently on Arava, Prednisone 10 mg,

> > Cymbalta for the depression that comes along with this, and now

> > Rituxan. My Rhuematologisy just put me in a study to see how

the

> > Rituxan will help. I had to have a PICC line put in because my

> > veins are really bad. And nobody can ever stick me for an IV.

I

> > actually just finished my 2nd infusion today. So far, so good-

> with

> > the side effects. The dr says it generally takes about 1 mth to

> see

> > any results. I have never really talked to anyone else about

> having

> > RA. I don't know anyone in my area that has it. So I was

> wondering

> > if anyone else has been on Rituxan that has had any (good or

bad)

> > results.

> >

>

[Guest guest]

hello bella,THANK YOU for responding to my message.thats what a PICC line is.the

drs.here in corpus christi & san antonio,tx.have wanted to do to me for a long

time now,i always REFUSE! yes im a hard stick but its scarry,if they cant get me

where they know where the veins r what do they expect me to BELIEVE of this

procedure.yoy r STRONG & i thought i was strong,no way!!! however,they wanted to

put mine in my neck,is there a difference in where its put??????do you mind me

asking how young you are???its just so nice to chat with someone who knows what

you r going through & what you have already been through!!!! they have checked my

heart as well cuz they say i have a heart murmur & i tell them i have had alot of

x-rays & exams & they have never told me that before.heart diease runs in my

family as well as cancer,I HATE THAT WORD!!!! well,i hope things get BETTER for

you bella & i HOPE you feel better soon!!!!! god bless,melyndagamez>wrote:

bella_1180 <bella1180@...> wrote: Hi Melynda,

Well for the rituxan infusions in my area, they sent me to Florida

Hospital's Cancer Center. They have a great oncology office there

that is all set up to give the Rituxan. But when I went in for my

consult with that Dr, he said that I only had 1 good vein & didn't

want to chance it for the nurses there in case anything happened.

So he was like I'm going to schedule you for a PICC line. I was

like ok, but nothing more was mentioned to me. So I had it

scheduled for the day before my first infusion. So, I was curious

what exactly this PICC line was. I looked online & researched it.

Well, basically it is a catheter that goes into a major vein in your

upper arm. They actually locate it with a ultrasound. So they know

where to find a good one. This tube goes in your arm & feeds to a

chamber that sits right about your heart. Immediately when I saw

that my heart was involved I had a slight panic attack. So I went

in for the procedure & they have a special IV that handles it. So I

felt better knowing they do this procedure day in & day out. They

give you shots of lanocaid (I believe- its basically the same type

of numbing stuff they give you at the Dentist's office). I thought

for sure it would hurt really bad. It didn't though. You just

basically feel pressure while they are feeding the tube in. After

everything is cleaned up, the bandage area is probably 3 inches long

& 4 inces wide..The tube comes out but is sealed up with a clear

bandadge so you can see the placement of the tube & make sure it

doesn't get infected. Then the tube comes out of the top of the

bandage and has 2 IV connectors that are taped onto the bandage

itself. After they finish, they have you go have a chest xray to

make sure it is in place. After some debate between the radiologist

& the IV team, they sent me home & said the placement would be

fine. The radiologist was thinking it may have been a bit too

long. Well, on a side note, if you ever get one of these, you

probably want to set aside a good 5 hr timeframe. I walked in there

thinking this was going to be a quick thing. Not the case. Which

is fine, I would rather them take their time, especially with some

tubing feeding down to my heart. But while I was there, my heart

started fluttering. This had never happened to me all my life. I

figured it was just because the tube was settling in. Over the next

few days, these flutterings got more frequent, especially while I

was trying to go to sleep. At points, it felt like my heart was

jumping everywhere & out of my chest. I told the nurses at my appt

the next day, but of coarse it didn't do it while I was there. But

it seemed the minute I got in the car to leave, it started again. I

waited until the next day & I called & left a message for the

nurse. She called back & told me to go to the Emergency Room asap

to have an EKG done. So I went. The EKG was fine. Over the lovely

12 hours I was there, I had another set of chest xrays done, blood

work, & a catscan. The dr let me know that my labs came back border

line adnormal, so he was thinking this was caused from a clot from

the PICC line. So when I went in for the cat scan, they used my

PICC for the IV (but after sticking me about 2 times and hitting

them, because the nurse didn't know they could just use the PICC).

They shot the catscan stuff in through the PICC, it was a very quick

infusion, not a drip like my Rituxan. So after that, I have not had

any other fultterings or palputations. It got a little frustrating

at the ER because it was like I kepting telling them over and over

this had to do with the PICC line. It was like they never heard me.

They kept thinking it was overload on caffeine or a chinese dinner

even had caused these. Neither of which occured. Anyhow, the

flutterings stopped which is good, but I got a call the other day

from my RA dr. He had gotten the results from my catscan & saw my

spleen was enlarged. So I am scheduled for another catscan next

week, to see if I have to have it removed. Sorry for the book. I

just wanted to let you know what exactly happened to me. I have to

have this in for another week. Its liveable, it just gets annoying,

because you have to go in for regular dressing changes. You have to

make sure you don't get it wet, so taking showers/ baths can get

interesting. Especially with a plactic shopping bag wrapped around

your arm. And the questions. It is defintely an eye opener on how

some people out there have no compassion. I get asked like 100

times a day " whats wrong with you " , " eww, what is that " , and looks

like I have an alien strapped on my arm. I've gotten used to it,

but I'm already very self conscious because I do walk with a limp

because of my knee problem. I hope this answers your questions

about it, and probably is a tad more info then you were looking

for :0)

> >hi erin,my name is melynda.im 38yrs.young & have ra as well.i

have

> never taken rituxin but i am on some that you listed.my response

is

> to trying to get an iv in my veins.i to am a hard stick,what

exactly

> is it that they put on you?curious in corpus

> christi,tx.melyndagamez@...>wrote:

> > Hi..

> > My name is & I am 27. I have been living with RA since I

was

> > 16. I have been on so many different meds & they either don't

work

> > at all, or just give temporary relief. I believe in the

begining

> > they started me on Naprosyn & a low dosage of Prednisone. The

RA

> > progressed and throughout the next 2 yrs I developed limitations

in

> > my knee & elbows. Now, I can't straighten any of them..they are

> > permanently bent. Over the years, I have tried many different

> > meds. I have been on Celebrex, MTX (which caused a 10 days long

> > hospital visit from drug induced hepatitis), Plaquenil, Enbrel &

Im

> > sure a few others Im forgetting. All of which I haven't had any

> > major results from. I am currently on Arava, Prednisone 10 mg,

> > Cymbalta for the depression that comes along with this, and now

> > Rituxan. My Rhuematologisy just put me in a study to see how

the

> > Rituxan will help. I had to have a PICC line put in because my

> > veins are really bad. And nobody can ever stick me for an IV.

I

> > actually just finished my 2nd infusion today. So far, so good-

> with

> > the side effects. The dr says it generally takes about 1 mth to

> see

> > any results. I have never really talked to anyone else about

> having

> > RA. I don't know anyone in my area that has it. So I was

> wondering

> > if anyone else has been on Rituxan that has had any (good or

bad)

> > results.

> >

>

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

Never miss a thing. Make your homepage.

[Guest guest]

Oh its no problem to reply. I'm glad that I can be of help to someone else.

I'm actually 27 yrs old. And this will be my 11th yr with RA. Anyone with this

disease is brave. We have so much to face and not so much support locally. I'm

willing to try whatver I can to get myself better. I go through ups and downs.

And feel sometimes that I just want to give up. Cancer is a very scarey word

too. Cancer runs in my family too. So there is always a constant worry about

that. So I can totally understand when that and heart disease run in your

family. That's strange they never told you about the heart murmurs. I would

definetly ask some questions about that and you may have to see a cardiologist

to make sure everything is ok. And I hope it is ok! Isn't ra enough and all the

side effects that come alone with it? So my dr has tried to get me on rituxan

for a year now. I was trying enbrel and was hoping that would be my miracle

drug. But it wasn't. The dr told me that the rituxan is basically the last

step for now. And that if I choose to stay on the same drug regimine as I was

on before the rituxan, I will either stay the same or get worse. So I figured I

would give it a try. I signed up for the picc line because I know I'm a very

difficult stick. Especially for an iv. Everytime I go to get blood work done,

they cringe because they know I'm a hard stick and hate to hurt me. I'm not

sure if the placement matters witht the picc line. They never said anything

about going through the neck. I know its scarey, but if it does help you in the

end, I would give it a try. I think being in your neck may be easier for you.

I have to be careful having it in my arm. I can't pick up anything over 5 pds w

that arm and make sure nobody bumps into me or me bump into anything else. It

is nice to finally chat with someone out there that can understand what I'm

going through. And not think I'm making it up or want a pity party. I just

want people to understand or at least try. I think its harder for people to

understand because I am younger and arthritis isn't associated with younger

people. Especially when I first got this and I was a junior in high school.

Nice to vent and get it out! Thanks for listening.

> > >hi erin,my name is melynda.im 38yrs.young & have ra as well.i

> have

> > never taken rituxin but i am on some that you listed.my response

> is

> > to trying to get an iv in my veins.i to am a hard stick,what

> exactly

> > is it that they put on you?curious in corpus

> > christi,tx.melyndagamez@>wrote:

> > > Hi..

> > > My name is & I am 27. I have been living with RA since I

> was

> > > 16. I have been on so many different meds & they either don't

> work

> > > at all, or just give temporary relief. I believe in the

> begining

> > > they started me on Naprosyn & a low dosage of Prednisone. The

> RA

> > > progressed and throughout the next 2 yrs I developed limitations

> in

> > > my knee & elbows. Now, I can't straighten any of them..they are

> > > permanently bent. Over the years, I have tried many different

> > > meds. I have been on Celebrex, MTX (which caused a 10 days long

> > > hospital visit from drug induced hepatitis), Plaquenil, Enbrel &

> Im

> > > sure a few others Im forgetting. All of which I haven't had any

> > > major results from. I am currently on Arava, Prednisone 10 mg,

> > > Cymbalta for the depression that comes along with this, and now

> > > Rituxan. My Rhuematologisy just put me in a study to see how

> the

> > > Rituxan will help. I had to have a PICC line put in because my

> > > veins are really bad. And nobody can ever stick me for an IV.

> I

> > > actually just finished my 2nd infusion today. So far, so good-

> > with

> > > the side effects. The dr says it generally takes about 1 mth to

> > see

> > > any results. I have never really talked to anyone else about

> > having

> > > RA. I don't know anyone in my area that has it. So I was

> > wondering

> > > if anyone else has been on Rituxan that has had any (good or

> bad)

> > > results.

> > >

> >

>

>

>

>

>

>

>

>

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

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

Hi -

I have been on Rituxan for 4 doses. I waited 6 months between the `st two

but now I go every months. The Rituxan gave me a lot of relief the first 2

times- the 3rd time- dint get any releif. The last one was Mid January

followed up 2 weeks later. This one is helping just liek the first 3. So

good luck- and I hope it does good.

Jil

On 3/5/08, bella_1180 <bella1180@...> wrote:

>

> Hi..

> My name is & I am 27. I have been living with RA since I was

> 16. I have been on so many different meds & they either don't work

> at all, or just give temporary relief. I believe in the begining

> they started me on Naprosyn & a low dosage of Prednisone. The RA

> progressed and throughout the next 2 yrs I developed limitations in

> my knee & elbows. Now, I can't straighten any of them..they are

> permanently bent. Over the years, I have tried many different

> meds. I have been on Celebrex, MTX (which caused a 10 days long

> hospital visit from drug induced hepatitis), Plaquenil, Enbrel & Im

> sure a few others Im forgetting. All of which I haven't had any

> major results from. I am currently on Arava, Prednisone 10 mg,

> Cymbalta for the depression that comes along with this, and now

> Rituxan. My Rhuematologisy just put me in a study to see how the

> Rituxan will help. I had to have a PICC line put in because my

> veins are really bad. And nobody can ever stick me for an IV. I

> actually just finished my 2nd infusion today. So far, so good- with

> the side effects. The dr says it generally takes about 1 mth to see

> any results. I have never really talked to anyone else about having

> RA. I don't know anyone in my area that has it. So I was wondering

> if anyone else has been on Rituxan that has had any (good or bad)

> results.

>

>

>