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D.B.
12-31-2013, 10:48 AM
so happy all went well and no adverse side effects. started with steroid and benedryl. then 1/2 hr later started RTX 1000mg. was there about 5 hrs. BF stayed with me and brought me snacks lol hoping i dont experience flu like sympto.s tomorrow. thanks to everyone here who posted their experiences as i went with positive attitude that things would go well

Pete
12-31-2013, 11:02 AM
Glad to hear all went well. Hope you continue to feel well.

carriej22
12-31-2013, 01:23 PM
Wow 5 hours! That is a great time!

My first one was almost 12 hours, but I had a reaction. Man, that was the longest day of my life! Mine continued to drop, down to 8, 5, and the quickest one was about 4 hours. Still not a fun time; but gotta do what ya gotta do!

I just felt pretty wiped after mine and slept pretty much for a few days... No nasty sicknesses though.

JenG
12-31-2013, 01:41 PM
So glad to hear your infusion went well! Are you doing 2 infusions or 4?

I just had my first infusion last Wednesday, and like Carrie, I had a reaction too. I have not had any sickness since but do think that I am still having a post reaction. I don't think my rheumatologist believes me as all of the inserts say that reactions can only happen during infusion but I have tingling/weakness in my arms, a tight and heavy chest, hot flashes, rapid pulse and occasional wheezing--all of which I had along with my anaphylactic response during infusion. I have been taking benedryl when it gets too bad and it goes away leading me to believe that it really is a reaction. I'm to go in for second/last infusion next Wednesday. I am generally the exception as I am highly sensitive to many meds.

I am thankful that everything has gone well for you so far and am looking forward to hearing how you are doing over the next few weeks and months! Hope you are able to enjoy your New Year's Eve and wishing you a healthy new year!

D.B.
12-31-2013, 01:58 PM
Wow 5 hours! That is a great time!

My first one was almost 12 hours, but I had a reaction. Man, that was the longest day of my life! Mine continued to drop, down to 8, 5, and the quickest one was about 4 hours. Still not a fun time; but gotta do what ya gotta do!

I just felt pretty wiped after mine and slept pretty much for a few days... No nasty sicknesses though.

glad no more 12 hrs for you.
as soon as we got in car for 2 hr drive home i was asleep lol

D.B.
12-31-2013, 02:21 PM
So glad to hear your infusion went well! Are you doing 2 infusions or 4?

I just had my first infusion last Wednesday, and like Carrie, I had a reaction too. I have not had any sickness since but do think that I am still having a post reaction. I don't think my rheumatologist believes me as all of the inserts say that reactions can only happen during infusion but I have tingling/weakness in my arms, a tight and heavy chest, hot flashes, rapid pulse and occasional wheezing--all of which I had along with my anaphylactic response during infusion. I have been taking benedryl when it gets too bad and it goes away leading me to believe that it really is a reaction. I'm to go in for second/last infusion next Wednesday. I am generally the exception as I am highly sensitive to many meds.

I am thankful that everything has gone well for you so far and am looking forward to hearing how you are doing over the next few weeks and months! Hope you are able to enjoy your New Year's Eve and wishing you a healthy new year!

thank you. happy new year to you. seems reactions not a rareity. how will 2nd infusion be different (prevent reaction?). im having 2 infusions. next one in 2 weeks.
does your dr think your symptoms are disease related vs treatment related?

JenG
12-31-2013, 02:43 PM
how will 2nd infusion be different (prevent reaction?). im having 2 infusions. next one in 2 weeks.
does your dr think your symptoms are disease related vs treatment related?

For the 2nd infusion they will administer the Benadryl via IV rather than a pill and give me a larger dose prior to treatment I believe. I know 2nd infusion is usually administered at a quicker rate--I'm hoping they keep it slower for me! Dr. didn't really make much of a comment regarding what I believe to be treatment related symptoms other than to just monitor. I had an ENT apt today and ran it by him--he was much more open to it as he has known me for a much longer time. No answers though as he wasn't the one prescribing the treatment...I guess I just get to tough it out!!

Again, I am so happy for you that you didn't experience any reactions! I'm glad you were able to sleep on your trip home--I was wired even with the extra Benadryl. I attributed it to the steroid as even half a Benadryl usually knocks me out. Good Luck!!

windchime
12-31-2013, 05:12 PM
Jen,

Are you on prednisone? If so it might help to up your dose for a couple of days. That would help with the chest symptoms. If you aren't on it, maybe ask the doc if you can have some. Hope you do better next time.

DB,

Glad your infusion went so well. If you crash and sleep at least you're staying out of trouble. Lol Good luck with the next one also.

carriej22
12-31-2013, 05:32 PM
If it makes anyone feel better, I only had the reaction during the first infusion and was smooth sailing every other one.

I started with an itchy throat and then it just escalated. I probably should have told her immediately that my throat started to itch, but at the time I didn't think it could be a reaction until stuff started beeping and I was coughing.

Around my 3rd infusion I started being able to have a nap during the infusion, or at least close my eyes and relax.

Alysia
01-01-2014, 03:49 AM
Hi Dina,
I am glad your first rtx went well. usually it does. the only reaction I had was low BP, down to 35/70, so I drank a lot and ate chocolate and it was up a bit. it was great excuse for chocolate celebration :wink1:
Jen, you can ask them to give the rtx in a lower rate if you wish. when my BP was down, they changed the rate to a lower one. I got steroids in the IV before the rtx, 125mg.
I hope you2 can relax and sleep during it. this is what I did during my last 2 IV, and after I was calmed down by an understanding good friend.
good luck and happy new year, healthy one :smile:

gilders
01-01-2014, 09:32 AM
I look forward to reading any updates as I maybe starting rtx for the first time next month.

Lilly
01-02-2014, 12:03 PM
So glad things went well! It sounds like your experience was similar to mine. I've had 3, I get one every 6 months, its basically a maintenance thing, I've had it so long that it was the best thing to do for many reasons. I basically feel like carriej22......I'm tired and feel worn out for a couple days. But no bad side effects. Keep up the positive attitude! That's so important! Take care :)

Debbie C
01-02-2014, 12:23 PM
Glad yours went well and I'm sure the next one will also.
When I had mine ( I was scheduled for 2 ) but everything went well during the infusion, mine took about 8 hrs and they gave me 2 heated blankets and a pillow and I went to sleep but toward the end it was time for them to go home for the day and they pushed the last amount in quickly. I ended up getting flu like symtems so my reumy won't let me have another unless absolutely necessary.

Lilly
01-02-2014, 12:24 PM
For me, the whole process was easy. I was apprenhensive at first because the nurses kept calling it "chemo". I didn't think of it like that, but I guess it is a strong med. But they have been using it for pts with Rheumatoid Arthritis for a long time. So I knew it was safe. They give u Benadryl first, and it always puts me to sleep. So honestly, I sleep through half of it! The place I go is in a hospital, but the room looks like a place where u give blood. I always meet someone nice, and some people are so worse off than me. It was interesting to me how some people would just come in, like a young college student. They act like they are there every other day! They get the meds going, and sit n study. So I'm sure your experience will be a good one, just relax and ask any questions you have (I asked a lot) and let us know how u do! :)

Debbie C
01-02-2014, 12:26 PM
Jen,yours does sound like you had a bad reaction to it. I would make sure everything is o.k. before the next

LillysMom
01-02-2014, 01:35 PM
Glad all went well. My daughter's 'friend' is me . . . Mom. She has had several now, one every 6 months. I have observed her after because she usually stays with us for the first couple days, and when she is home I try to check daily for a while after. She expresses that she feels like 'something foreign has invaded her body.' She also has had some mood problems after at least one infusion. So everyone has different reactions, even when they are not considered medically dangerous. But this being your first one, don't hesitate to call your doctor if you have any of the side effects on the list he/she gave you. Better safe than sorry until you understand your personal reactions.

LillysMom

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mmthomm
01-03-2014, 06:20 PM
I had the same brief itchy throat with my first infusion only and then felt fine for the other three - they also ended up giving me 100mg of Solumedrol prior to the infusion. I have been so happy with the lack of side effects!

MikeG-2012
01-03-2014, 11:08 PM
Having just went through four of these within the last month, all I can say is that mine went well all four times.

The first one was over six or seven hours, the next three were four to five. Before each one that I had, they gave me IV Benadryl and IV steroids (120 mg solumedrol). The Benadryl made me groggy, so I learned to have a can of caffeinated pop after the Benadryl was put through the IV. The combined amount of steroids did give me some insomnia the night of the infusions, but I did not have to be anywhere the next day, so I crashed when I finally could sleep.

Again, I think every one of us has said it one time or another on this forum, BE YOUR OWN ADVOCATE! If YOU feel like something is not right, TELL THEM! If they don't listen, tell them AGAIN. I'm a very passive person, but have learned that a little mild encouragement and sometimes a little bit of controlled, mild aggression gets doctors' and nurses' attention, quick! Especially when they don't expect it from you. (-8

Good luck with #2!!

MikeG-2012

KimH
01-19-2014, 03:50 AM
I had my first of four treatments on Thursday. It went well. I got 125 mg solumedrol and then 1000 mg RTX infused over 5. hours. I felt OK yesterday but last night and so far today I am glued to the couch. My next infusion will be again on Thursday and then for the next two. The insurance approved four at once a week. I guess the doctor will figure out what is next from there.

MikeG-2012
01-19-2014, 04:02 AM
I had my first of four treatments on Thursday. It went well. I got 125 mg solumedrol and then 1000 mg RTX infused over 5. hours. I felt OK yesterday but last night and so far today I am glued to the couch. My next infusion will be again on Thursday and then for the next two. The insurance approved four at once a week. I guess the doctor will figure out what is next from there.

Hang in there Kim. Listen to your body the next few weeks/month and when it tells you to go get glued to the couch, ask it what kind of glue you should use--instant or slow drying! (-8 LOL!

Now you know what to expect, so you can plan a day of rest afterwards if you need one.

I'm glad to hear it went good though!

MikeG-2012

D.B.
01-22-2014, 10:19 AM
Hi all :) thanks for sharing your stories. i am on way home from 2nd infusion. told nurse how awesome and informative everyone is on this forum. infusion went well again. we decided that the initial steriods result in an engerized state and i dont feel like sleeping. my brother however (my driver) slept most of the time. mostly im hungry. havent seen dr yet so not sure going forward. peace and comfort to you all

Alysia
01-22-2014, 05:43 PM
Hi Dina,
I am glad all went well. I was very sleepy during it and after. every one is different. give yourself enough rest now.
thanks for sharing.

John
01-23-2014, 08:13 AM
Hi Dina
I've had my 2nd rtx yesterday and both times it went well. (: I believe it is helping. They told me that after the initial 4 treatments it will take about 4 weeks to get the full results. Hope everything goes well with you. It is a divesting disease with little known about. Lets stick together and maybe we can find out what causes it and a cure.
John

Alysia
01-24-2014, 03:45 AM
welcome John :hug3: I am glad it went well. when you feel like, please tell us more about you.

John
01-24-2014, 05:30 AM
welcome John :hug3: I am glad it went well. when you feel like, please tell us more about you.

I hope this gets to you as I'm still finding out how to use the site.
I am a special ed. teacher in a youth locked detention center. I haven't been back to work this year due to the wg. No energy, pain in shoulder, wrist, chest, ankle. Was hospitalized for a week with a blood clot in rt. leg and rt. lung, with pneumonia in my left lung. Had a lung biopsy and they found wg, and a mass in the left lung, which they didn't know what it is, but no cancer yea!!!!!!!. Now they want to operate to find out what it is. The second ct scan showed that it was a little smaller and I said as long as it is getting smaller I will wait. Have you found out anything new yet.

D.B.
01-24-2014, 09:16 AM
Hi Dina
I've had my 2nd rtx yesterday and both times it went well. (: I believe it is helping. They told me that after the initial 4 treatments it will take about 4 weeks to get the full results. Hope everything goes well with you. It is a divesting disease with little known about. Lets stick together and maybe we can find out what causes it and a cure.
John

Hi John. this is great place tobe and to stick together. there is so much 1st hand invauble knowledge and always someine quick to respond to our questions. igt was such a relief to find others dealing w same issues when my doctirs just called me an dnigma. hope rtx continues to work for you. your positive attitude is inspiring and will help you thru this. :)

KimH
01-31-2014, 08:45 AM
Quick drying glue, Mike. Lol! Just got home from number three. I am hopeful that I will be able to stay awake for the superbowl!