Rituxan side effects better or worse?

[Cat P.]

I was recently diagnosed with a WG flare after many years (with thanks to those who urged me to get to the doctor without delay) and have been scheduled for Rituxan starting next week, once a week for four weeks. My initial treatment in about 1998 was daily Cytoxan pills for many months, which were pretty toxic and had their own side effects, but started making me feel well overall pretty quickly.

When I read the posts about Rituxan here, it sounds like the side effects are somewhat like flu symptoms--fatigue, etc. However, those are the symptoms I am already having from WG. Does Rituxan make those symptoms worse, for those who have taken it? Does it give a subjective feeling of relief before long? Not sure that this question makes sense, and everyone is obviously different, but I'm trying to get a subjective sense from others as to whether it's going to make me feel worse, better, or just substitute some flu-like symptoms for the ones it is relieving!

Also, were you able to drive yourself to the treatments and home? Not entirely sure how much independence I can expect compared to my usual very independent life!

[Alysia]

Hi Cat P. (Btw, are you a cat person ? I am)
After my first rtx IV years ago I was too tired to drive back home. In the last years I sleep during most of the IV and I can drive after it. But I suggest you to ask someone to drive you until you will know how it affects you.
I dont have flu like symptoms after rtx. Only BIG fatigue during the week after. So try to take as much rest as you feel like. Just imagine the battle that will be going on inside your body, and let this miraculous medicine do its wonders.

[Pete]

Cat P.

I agree with Alysia about driving.

My post-treatment symptoms include wakefulness the night following treatment followed by mild fatigue the day after. I get a big dose of steroids, some Tylenol, and some Benadryl with my rtx, so I believe the pre-treatment drugs have more to do with my symptoms than the rtx itself.

[Cat P.]

Thanks Alysia and Pete; it is nice to get a sense of what to expect. Also good to work within the limits in terms of scheduling with work and time off.
Alysia, yes, I'm a cat person! :rolleyes1: Nice to have them around when you're not feeling great, isn't it?

[Alysia]

Thanks Alysia and Pete; it is nice to get a sense of what to expect. Also good to work within the limits in terms of scheduling with work and time off.
Alysia, yes, I'm a cat person! :rolleyes1: Nice to have them around when you're not feeling great, isn't it?

Cats are angels on earth.
Did you know that rtx was first developed from chinese hamster ? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171018/

I copy:
"The first quantities of rituximab were generated by heterologous expression from a Chinese hamster ovary (CHO) cell in hollow fiber reactors".


I say that that's why cats are following me everywhere I go... :wink1:

Good luck at your infusions.

[Cat P.]

Chinese hamsters? That must be why my doctor told me there were mice genes in the Rituxan. Luckily my cats are so well-fed and lazy that they would not chase a even the most small and enticing mouse, but I'll be on the lookout for any confusion. :tongue1:

[Cat P.]

Yesterday I had my first rituximab infusion. So far it has knocked me for a loop. I had severe chills all night, which I was not expecting...but should have expected if I had read the hospital's handout carefully! Has anyone else had that reaction?

If you did have a reaction to rituximab, was your second or third round of infusion better in terms of side effects?

[Alysia]

Yesterday I had my first rituximab infusion. So far it has knocked me for a loop. I had severe chills all night, which I was not expecting...but should have expected if I had read the hospital's handout carefully! Has anyone else had that reaction?

If you did have a reaction to rituximab, was your second or third round of infusion better in terms of side effects?

I didnt have chills at the night after rtx but sometimes I have nightsweats after. Not sure if it is a reaction to rtx or to the high steroids.
I am on rtx since 2013 every 6 months. I dont remember exactly how it was in the first rounds, but over the years I feel easier with it. Less exhausted. Although it can also be because now I sleep during most of the IV, take a day off work the day after and rest during rtx month.
Try to listen to your body. Dont push yourself. Rest as much as you need. Let this magical med do its' miracle.

[Masha]

Yesterday I had my first rituximab infusion. So far it has knocked me for a loop. I had severe chills all night, which I was not expecting...but should have expected if I had read the hospital's handout carefully! Has anyone else had that reaction?

If you did have a reaction to rituximab, was your second or third round of infusion better in terms of side effects?

I have only gone through this one time for one month, four times. My first two times I ached the next day. Due to the 100 mg of Prednisone I never slept on the night of infusions. The first two times that I ached, I visualized a good angel emoji in my blood killing the bad guys. Third time didn’t ache. Fourth time came home so charged I reorganized my entire closet. My nurse encouraged me to eat to keep the nutrition up. I brought knitting and kindle with me but ended up talking to the revolving door of RA patients, who came and went, while I was embedded in.
I love the cat and mouse thing. Preparing for my next one month treatment. Praying it works.
How many treatments if Rituxan before you see results? My daily dose of Prednisone has made me an insomniac. Have tried natural pills and teas. How do y’all sleep? I am just a transplant here in the south, but southern speak is y’all and Bless your heart.

[tomary76]

My first infusion was last year. 4 times the first time then just one 6 months later. I think I did ok with the first ones, but I was sick from the Wegs so it was hard to tell. The next time several days later I just felt really wiped out. Went to work but after my 8 hrs I would go home and do nothing. Now I just had another infusion. This time was even worse. I again did well until about 5 days after. I could barely get out of bed. Lose of appetite. This lasted around 3 weeks. Starting to feel slightly better though.

[MikeG-2012]

I have had RTX infusions since 2013. I think the count is now at 20. I usually have my infusions on a Thursday. I've found that I have a steroid infused insomnia night, the first night. The next day is rough, but mostly resting. Day three for me is the crash day. On that day, I do not want to get out of bed except to eat and go to the bathroom--and I do eat and drink as much as I can tolerate. Once Monday rolls around, I am usually good to go to work full time for the whole week. About 2 weeks after the second infusion (4 weeks from the first one), I have some fatiguing days, but they are just days of feeling run down and tired, nothing more.

That's my experiences.

Mike

[Alysia]

Last Wednesday I just had my first IV, out of 2, of my every 6 months rtx. Like Mike, I think I had about 20 IV so far. This time I had excellent nurses. They brought me good pillow, 2 blankets, it was quiet this time, so I slept from about 09:30 to 14:30. I woke up only for bp checks, a sandwich or so and back to sleep. I now also ask to get fluids IV before starting rtx and after it, so it keeps me hydrated. Back at home I rested and went again to sleep at 20:00. So many hours of sleep which really helped me not to feel too bad. I think this is the key to bear it, to sleep as much as possible.
Maybe also I am lucky that the high IV steroids didnt disturb my sleep, only made my cooking better; the day after, the Shefferds' pie turned out yummy :drool:

[MikeG-2012]

Maybe also I am lucky that the high IV steroids didn't disturb my sleep, only made my cooking better; the day after, the Shefferds' pie turned out yummy :drool:

Yes, you are lucky! I'm jealous!! :tongue1:

[Masha]

Sleep and pie.....happy to hear it.

[jackiekc]

I have had RTX infusions since 2013. I think the count is now at 20. I usually have my infusions on a Thursday. I've found that I have a steroid infused insomnia night, the first night. The next day is rough, but mostly resting. Day three for me is the crash day. On that day, I do not want to get out of bed except to eat and go to the bathroom--and I do eat and drink as much as I can tolerate. Once Monday rolls around, I am usually good to go to work full time for the whole week. About 2 weeks after the second infusion (4 weeks from the first one), I have some fatiguing days, but they are just days of feeling run down and tired, nothing more.

That's my experiences.

Mike Interesting. I’m at the 2 weeks after the last Rituxan infusion and feel like crap. Muscle and joint pain and fatigue. I’m hoping I get to move to every 6 months soon.