Re: Not sure? This is really long (sorry)

[Guest guest]

Bonnie, I am also on Rituxan and I have had some form of " weird " episode each

infusion I've had. One time my head hurt so bad that the top of my head

actually hurt to touch- it was super sensitive like all the nerves were exposed

or something. It was strange!! You know you're ill when you're too sick to go

the the ER and that's how I felt!! Ater the first infusion of each round I

always feel completely weakened in body strength for at least a week. There is a

lot of strange things that happen at infusion time but then I feel soooo much

better- I actually have pain free time now!! These drugs are a bit scary! Worth

it? I really don't know...... MicheleBB

>

> Had a Rituxin infusion on 6/10 and a pneumonia vaccine everything went fine...

Come Friday I start running a low grade fever 99.0 (I usually run very low,

around 97.0). Come Monday I feel pretty rotten and have a hard time staying

awake at work... Came home took my temp and it was at 100.2 so I went strait to

bed and did not wake up till Tuesday morning... Tuesday I wake up and I can't

move for all the pain... (Wondering whether someone got the license plates of

the mac-truck that plowed me over) Finally get out of bed to realize I'm dizzy,

head hurts and nauseous to add to the fun.

>

> I call my Infusion nurse to see if this could be a reaction to the Rituxin...

He immediately put me through to my Rhuematologist and got me an immediate

appointment.

> Half dead (or wishing I could just die to get it over with) I manage to get in

the office and to a chair... trying my damnedest not to cry (often

unsuccessfully) I wait my turn to see the nurse practitioner. She took one look

at me and went and got the the head doctor... (Geez, I must have looked as bad

as I felt.) He orders me to get a spinal tap ASAP and has his staff make the

appointment... The other office can't get me in until tomorrow (only as a favor

to my Rhuem) so he gives me percacets for the pain and says to take tylenol for

the headache... He also gave me Tamiflu. He explains that he isn't sure if

its a Rituxin reaction or weather I caught a virus due to my immune system being

low... Either way He seems scared for me... (His over concern really scared

me...) I go home and take my temp. and its now 101.8 take all needed meds and go

to bed.

>

> Wednesday, I started feeling slightly better... (That Tamiflu must be some

awesome stuff, because I'm alive!!! Yes, I had my doubts)

> My husband was also worried as he took off work just so he could watch me and

scream some more about me not calling him home from work yesterday... (Sweet

but annoying) He drove me for the spinal tap and they drained me of tons of

fluid. The doc kept commenting on how unusual it was to run such a battery of

tests... After test, I was told I need to lay on my back for 12 Hours and drink

lots of caffeine to keep the headaches from the test down to a minimum.

>

> Now today I'm forcing down more caffeine and taking tylenol for the headaches

but I feel manageable. (Which says a lot being I was knocking on death's door

just two days ago)

>

> Which leaves me asking, " What on earth is going on? " Has anyone else

experienced this before? Did it come and go this quickly?

> The test should all be in by next week, but as usual, I doubt they'll find

anything... Whatever my body is doing to me, it appears to want to do it

secretly...

> Perhaps a bunch of microscopic ninja's just causing havoc? or possibly Stan's

sock puppet? I have no clue and apparently I'm doing good at stumping the

Doctors too!

> Bonnie

>

[Guest guest]

Bonnie,

I hope that they can get at the root of your sickness. Sorry that

you've had such a hard time. Please keep us posted.

Sue

On Jun 18, 2009, at 10:41 AM, Bonnie wrote:

>

> Which leaves me asking, " What on earth is going on? " Has anyone

> else experienced this before? Did it come and go this quickly?

> The test should all be in by next week, but as usual, I doubt

> they'll find anything... Whatever my body is doing to me, it

> appears to want to do it secretly...

> Perhaps a bunch of microscopic ninja's just causing havoc? or

> possibly Stan's sock puppet? I have no clue and apparently I'm

> doing good at stumping the Doctors too!

[Guest guest]

Bonnie, I hope your rheumatologist will figure out what's going on. That's

sounds awful.

Not an MD

On Thu, Jun 18, 2009 at 9:41 AM, Bonnie <tiredtaz@...> wrote:

> Had a Rituxin infusion on 6/10 and a pneumonia vaccine everything went

> fine... Come Friday I start running a low grade fever 99.0 (I usually run

> very low, around 97.0). Come Monday I feel pretty rotten and have a hard

> time staying awake at work... Came home took my temp and it was at 100.2 so

> I went strait to bed and did not wake up till Tuesday morning... Tuesday I

> wake up and I can't move for all the pain... (Wondering whether someone got

> the license plates of the mac-truck that plowed me over) Finally get out of

> bed to realize I'm dizzy, head hurts and nauseous to add to the fun.

>

> I call my Infusion nurse to see if this could be a reaction to the

> Rituxin... He immediately put me through to my Rhuematologist and got me an

> immediate appointment.

> Half dead (or wishing I could just die to get it over with) I manage to get

> in the office and to a chair... trying my damnedest not to cry (often

> unsuccessfully) I wait my turn to see the nurse practitioner. She took one

> look at me and went and got the the head doctor... (Geez, I must have

> looked as bad as I felt.) He orders me to get a spinal tap ASAP and has his

> staff make the appointment... The other office can't get me in until

> tomorrow (only as a favor to my Rhuem) so he gives me percacets for the pain

> and says to take tylenol for the headache... He also gave me Tamiflu. He

> explains that he isn't sure if its a Rituxin reaction or weather I caught a

> virus due to my immune system being low... Either way He seems scared for

> me... (His over concern really scared me...) I go home and take my temp.

> and its now 101.8 take all needed meds and go to bed.

>

> Wednesday, I started feeling slightly better... (That Tamiflu must be some

> awesome stuff, because I'm alive!!! Yes, I had my doubts)

> My husband was also worried as he took off work just so he could watch me

> and scream some more about me not calling him home from work yesterday...

> (Sweet but annoying) He drove me for the spinal tap and they drained me of

> tons of fluid. The doc kept commenting on how unusual it was to run such a

> battery of tests... After test, I was told I need to lay on my back for 12

> Hours and drink lots of caffeine to keep the headaches from the test down to

> a minimum.

>

> Now today I'm forcing down more caffeine and taking tylenol for the

> headaches but I feel manageable. (Which says a lot being I was knocking on

> death's door just two days ago)

>

> Which leaves me asking, " What on earth is going on? " Has anyone else

> experienced this before? Did it come and go this quickly?

> The test should all be in by next week, but as usual, I doubt they'll find

> anything... Whatever my body is doing to me, it appears to want to do it

> secretly...

> Perhaps a bunch of microscopic ninja's just causing havoc? or possibly

> Stan's sock puppet? I have no clue and apparently I'm doing good at

> stumping the Doctors too!

> Bonnie

>

>

>

[Guest guest]

Thank You everyone! I'm really having a bad time with this right now... The

headaches aren't that bad but I've gained some horrific back pain that is

basically forcing me to lay down the majority of the day... I placed a call to

the physicians office to see if this is typical with spinal taps but I've yet to

get a return call... (Go figure). I'll keep you all posted as I can...

Thanks for being there! I really need support right now and wish you all would

fit in my living room.

Bonnie