View Full Version : Out of Remission - going for 2nd round of Rituxan infusions
Meredith
05-30-2012, 06:07 AM
After having a wonderful year after taking Rituxan I ended up in the hospital last week thinking I had galbladder problems due to the pain in my side. The next day I knew it was wegener's because my eye got red. Went to the specialist and he gave me an IV of steroids. Will start the Rituxan treatment tomorrow (only 2 infusions instead of 4 this time). Just extremely tired and taking 30mg of preds daily in the morning. Makes me awfully nervous. We are suppose to leave for Disney on June 13th, which is the day of my second treatment. Wondered if anyone had problems with the 2nd rounds of infusions with Rituxan. Not sure if I should cancel trip.
Meredith
05-30-2012, 06:08 AM
One last thing - the doctor did say that I had had good results with the Rituxan (would have been a year this past March/April) but will now start getting them every 9 months to prevent damage.
pberggren1
05-30-2012, 08:43 AM
I hope the rtx kicks ass again for you.
Dryhill
05-30-2012, 11:43 AM
Sorry to hear that you are no longer in remission and like Phil, I hope the rtx puts you back in remission quickly.
Jim
alexciasmom
05-31-2012, 05:48 AM
our thoughts and prayers are with you....
freakyschizogirl
06-02-2012, 06:36 PM
Not sure if I should cancel trip.
It really depends on you and how the RTX reacts with you. I went bowling after one round of RTX but i was knocked out the day after.
pberggren1
06-02-2012, 06:52 PM
It really depends on you and how the RTX reacts with you. I went bowling after one round of RTX but i was knocked out the day after.
But unlike the bowling pins you didn't have someone to set you up again.
Dryhill
06-03-2012, 11:24 AM
It really depends on you and how the RTX reacts with you. I went bowling after one round of RTX but i was knocked out the day after.
But unlike the bowling pins you didn't have someone to set you up again.
Sam and Phil, is this the WG equivelent to the Lupus spoon therory? So instead of how many spoons one has to get through the day it is now how many bowling pins are still standing.
Jim
pberggren1
06-03-2012, 01:15 PM
This is correct Jim.
Ah, the Bowling pin theory. I love it! But, speaking of Bowling metaphors, let's leave out the divine reset button....
Al
freakyschizogirl
06-04-2012, 08:05 AM
I love Bowling but discovered that you can play 100 pin bowling on the Wii - 10 pin isnt the same now!
Dryhill
06-04-2012, 11:16 AM
I love Bowling but discovered that you can play 100 pin bowling on the Wii - 10 pin isnt the same now!
The mind simply boggles at the thought of downing 100 pins!
Jim
freakyschizogirl
06-04-2012, 06:01 PM
The mind simply boggles at the thought of downing 100 pins!
Jim
Its awesome Jim especially as it animated it shows you from 3 angels how the pins fell and in slow-mo if ya get a strike. Its very much like a domino effect because there are so many pins they knock each other down
Do you get higher scores too?
Its awesome Jim especially as it animated it shows you from 3 angels how the pins fell and in slow-mo if ya get a strike. Its very much like a domino effect because there are so many pins they knock each other down
Meredith,
So sorry to hear you are out of remission. The only suggestion I can give you is that if you do have any reactions, they had me take tylenol and benadryl every 4hrs for 24 hrs after the second infusion. I was still tired for the first 24 hrs or so, but did not have the reaction to rtx like I did with the 1st infusion. Good luck to you and hope you get to Disney World and have a good time, you need it.
Jana
Dryhill
06-04-2012, 11:34 PM
Do you get higher scores too?
I would hope so, think of the effort of going into the room where the tv is and setting up the Wii. Makes me tired just thinking about it. Hey Sam that is why you are loosing weight, it is all the exercise you are doing.
Jim
Lightwarrior
06-05-2012, 06:39 AM
Its awesome Jim especially as it animated it shows you from 3 angels how the pins fell and in slow-mo if ya get a strike. Its very much like a domino effect because there are so many pins they knock each other down
We have a Wii, and I agree that it is awesome, except when my 8 year old grand-daughter Alexis whips my butt and then dances around the house telling everyone :w00t:
Dryhill
06-05-2012, 10:54 AM
We have a Wii, and I agree that it is awesome, except when my 8 year old grand-daughter Alexis whips my butt and then dances around the house telling everyone :w00t:
The trick is to "accidently" stand on her foot, she might still dance around the house but it will be for other reasons.
Jim
freakyschizogirl
06-05-2012, 07:17 PM
Yes you do get a higher score and no it hasn't contibuted to my weight loss, sadly
Dryhill
06-06-2012, 12:06 PM
Sam, that really is a pity. :thumbdn:
Jim
Yes you do get a higher score and no it hasn't contibuted to my weight loss, sadlyNevertheless, Sam, those angels must be pretty fit by now, dancing on 100 pins!
Al
KathyB
06-06-2012, 12:48 PM
Hi Meredith -- sorry to hear you need to get back on Pred and are starting Rtx again. My 2nd round went well. Like you, two doses in two weeks rather than 4 in 4 like the first time. I tolerated it well. (I had my GB out and a week later started the Rtx treatments.). I went six months between treatments. This is the longest I've gone (6wks) since diagnosis without something happening to make me sick!! Woohoo! Hope you feel well enough to get to your vacation! Have fun!
Meredith
07-13-2012, 06:52 AM
Follow Up - Had no problems with the 2nd round of rituxan. Went to disney. Only problem I had was I started aching one night when we first arrived (maybe did to much? Rituxan? maybe the Weg's had not been completely knocked down yet?). Ended up taking some pain meds and getting into the bathtub to soak. Extremely tired the next day and took it easy. My husband has an old "really nice" wheelchair his father used and we had taken it down to Disney with us just in case there were problems. Ended up using it in the parks just so I would not get tired and have to leave early. I had such a guilt trip with using it but it did allow me to do everything.
Follow Up - Had no problems with the 2nd round of rituxan. Went to disney. Only problem I had was I started aching one night when we first arrived (maybe did to much? Rituxan? maybe the Weg's had not been completely knocked down yet?). Ended up taking some pain meds and getting into the bathtub to soak. Extremely tired the next day and took it easy. My husband has an old "really nice" wheelchair his father used and we had taken it down to Disney with us just in case there were problems. Ended up using it in the parks just so I would not get tired and have to leave early. I had such a guilt trip with using it but it did allow me to do everything.I'm glad you had a good time, Meredith! Just one note: Guilt trips are not applicable when dealing with the curve balls nature throws at you....
Al
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