Rituximab

[Stephene]

So I just got my fourth dose of Rituximab today.Joint pain hit me faster this round and my entire body feels awful.But on the flip side my lungs have felt normal for 2 days prior to this and today the 3rd day of lungs feeling good.Also since I haven't had a pain free day in weeks I was surprised that the 2 days prior to this dose I felt almost normal again.No pain at all.I was able to vacuum and cook and play with my grandbabies and was worried I would wake in pain but I didn't I think the Rituximab is working.I just have to take it easy a few days til the pain resolves.The pain seems to be a side effect I get from the infusions.If I am near remission than when the side effect resolves I should continue to feel good.I also am down to 10mg prednosne!!!!! Wow went from 60 to 30 to 20 and now 10 in just 2 and a half weeks! I will of course take it easy for a month but if I continue to do well after that I will slowly start some physical activities and try to regain my strength and muscle since I have lost most all my muscle mass from being bed ridden for so many months. But after so much anxiety about whether to try the Rituxan I am glad now that I did.I was so scared of a fatal reaction that I told my family NO.But when the approval from insurance came I finally just decided to do it.After all I wasn't living life as sick as I was and the choice to not try it would have been devastating considering how fast my lungs were worsening. So I wanted to share my experience in case anyone is scared or considering trying this treatment. Its different for everyone but I am very glad I did it.

[mishb]

I'm glad you did it to :biggrin1:

It must be so scary for you, already knowing what could happen........seeing your daughter go through this already.
At the same time it must be a little easier for you........for the very same reasons.

I'm glad you are starting to feel the benefits and hope you have many many more, pain free years, to play with the grandkids.

[Dirty Don]

Excellent Stephene...a very brave and rewarding move for you. Now, don't go too crazy on weaning the pred...it, too, can cause some interesting side effects...the weaning process that is. Best of luck.

[Alysia]

Hi Stephene,
very good news :thumbup: thanks for sharing.
I had 2 IV of RTX 5 weeks and 3 weeks ago, but I'm still waiting, not enough improvement.
how much time passed since yout first IV ?
I had at each IV 1000 mg of RTX. how much did you have ?

[Debbie C]

Stephene,glad everything went well with the infusions. I had 1 last year and had a side effect from it so the dr. won't give me another. The reduction of the preds ( so much so soon ) maybe wants making you feel like crap too. Just do want you can and if nothing then rest....Good Luck


Alysia..what other meds due they have you on. And I don't recall ..do you have lung involvement ? Hope you start to feel better soon also !!

[Alysia]

Alysia..what other meds due they have you on. And I don't recall ..do you have lung involvement ? Hope you start to feel better soon also !!

Hi Debra.
nice avatar ! :cool1: and your signature too ! I like it.
Im on pred 10 mg, starting to get down. and MTX 15 mg for a week, taking as 2.5 mg a day for 6 days. I had lung involovement but now it is only "scars" and cough. my nose. ears, joints and colon are now infected.
sorry to read that you had side effects of RTX. what did you have?

[Jaha]

Gladthat you made the decision to do the tx's, they say that sometimes it takes a while to feel or see the improvement. It sounds as though you have already felt some of that happening to you now. Best wishes to you on further wellness.

[Stephene]

So sorry that u had to stop the Rituxan.My daughter had a reaction as well and so they stopped it and gave her more benadryl and slowly administered it and so her infusions lasted about 8 hours each time. Because of that I was very scared to try the med as I have alot of allergies.What I did ( and this was at my own discretion and I actually did not ask my dr ) was I took a zyrtec 3 hours prior to my infusion. I take zyrtec daily anyways.I also took 2 tramadols and 1 ibuprofrin about an hour before my infusion as well as the tylenol they gave me.I know thats alot but it made the side effects bearable.I was still in alot of joint pain even with all of that.But I am glad I did the meds. Alysa...I had 700mg a week for 4 weeks.On the 3rd week we had to delay a week because of a sinus infection and was put on bactrim but that one week break helped my body aches. I am week 5 since my first infusion and this is the first time in months that I have been able to breathe without the daily plugs in my lungs.I am feeling a little more normal.Thursday Was my last infusion and the joint pain was a side effect of the rituxan.My lungs continue to feel great since Tuesday.I was worried the Rituxan wasnt going to work since I hadnt felt any change but I was amazed that I was in bed Sunday and Monday sleeping the entire 2 days than on Tuesday I woke up feeling like I was never sick.It was a total transformation in a day.So for me it took 5 weeks before I felt better.That was also with prednisone.My dr said he was going to put me on methotrxate for maintnance therapy and Rituxan again in about 6 months i think.I just hope I continue to feel this good between doses.I wish U all the best in the treatments you are recieving.And ty to everyone here for all the wonderful support.I know a week ago I had an awful mental breakdown from the prednisone and everyone here was understanding and helped me get thru that hard week.I am now feeling mentally better since being at 10mg. Hugss to everyone.

[Alysia]

Thanks Stephene.
I wonder about the differences in each country. you got 4x700 and i got 2x1000.
Im always wondering if Im getting the right treatment because there arent any other weggies here, as far as i know. this way or another, I wish us remmision.

:hug3:

[drz]

Thanks Stephene.
I wonder about the differences in each country. you got 4x700 and i got 2x1000.
Im always wondering if Im getting the right treatment because there arent any other weggies here, as far as i know. this way or another, I wish us remmision.

:hug3:

The two choices above seem to be the most standard ways of giving RTX and the choice seems to depend upon how the doctor learned to give it. There is no strong evidence yet that one way is better than the other although some doctors may have different views depending upon their own experiences.

[Stephene]

my doctor does the 4 week to help get to remision and once remision is accomplished then they do 2 infusions to remain in remision after about 6 to 12 months. My daughter gets 2 infusions every 6 months and she was in remision before recieving hers. :) hope that helps :) hugsss