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Posted 4/23/2014 11:11 AM (GMT -5)
ok so I am beating this dead horse....once again... I am asking for anyone that has used or is using the rituxan infusion to please let me know how it is doing for them... I am just scared to use something that if it doesnt work for me I will have to wait possibly 6 to 8 months to try something else....

Anything will help...

hugs

peggy

Posted 4/24/2014 2:26 AM (GMT -5)
Hi I haven't used it so hopefully someone that has will comment for you
However ive found that Everyone Reacts Differently to All the medications
so what works Wonders for one person might make another ill
unfortunately all you can do is Be aware of known side effects and keep a look out for them
otherwise take a leap of faith and see hop it goes
Posted 4/26/2014 9:45 AM (GMT -5)
Hi, I have not been on his medication but I have been on many over the years with RA and BadDay hits it square on. We all react differently to these meds so others experiences I have found can either help to put me at ease or make my anxiety much worse.

Make sure that you read up on the side effects and pay attention to them. Try not to worry yourself over the medication, stress will only make things worse in my experience. I pray and meditate and it has helped me quite a lot with stress. Also, yoga of all things has helped me with stress. I can't do many of the forms of it but I do what I can.

I hope that you get relief from your apprehension but most of all from the affects of RA. If this medication works for you it will be a major blessing. Take care.
Posted 4/26/2014 10:45 AM (GMT -5)
Thank u so much. I talked with my ra doctor and feel much better about my treatment. Hopefully will start I next week. Hugs to all peggy
Posted 4/27/2014 2:37 AM (GMT -5)
Hi Peggy:

I haven't been here for a while but I'm glad that you made your decision about Rituxan. I was afraid to try a couple medications also. Rituxan being one of them. We should try whatever meds are available(unless circumstance says "No"), in hopes that it helps. They all eventually stop working, so trying them gives us more time.
I'm glad that our Insurance allowed me the chance, at least.

I had the Rituxin infusion every 6 months. I was given Medrol, Benedryl and Tylenol before each infusion. It took 6 hours for the infusion. I brought my blankey, eye cover, books, cell, a light lunch(I was not allowed to leave the area), loose clothing, slippers, Insulin, blood meter and a few other things. The company sent me the napsack, slippers, a light blanket( I took my own), eye cover, etc.

The Technician checked my blood pressure and temperature 3 times during the infusion.

The Rituxan and other biologics did not work for me unfortunately. Actemera made me feel better only 20-30%, so I couldn't go off of the Prednisone.

The day after the first infusion I got a bad pain in my right leg from the ankle up to just past the knee a bit. My Rheumy said the pain was not from the Rituxan. I disagreed. On a different site, another Lady said that she had pains in both of her legs after the first infusion. I did not know her. I was told, if there were side effects that a Patient experiences, that aren't already listed, to report it to the Dr. or the Company. I did both. This pain, of course, will most likely not happen to you. I had it for 2 weeks. I did not get it with the second infusion. Except for drowsiness from the Benedryl for the rest of the day, these were my only side effects.

You are probably in the U.S. so our prices may differ a bit. Our Insurance paid for each Rituxan infusion, $5,482.00 and $29.49 for the Solu-Medrol Act-O-Vial. A $10. Pharmacy charge for each medication is also included. The Benedryl and Tylenol were free. :D

I am also on 9 - 10 mg. of Prednisone, since I have no other choice. 15mg. and lower is considered low dose. Many painkillers that I have tried do not work very good for me. I am on Tramadol also.

I wish you luck and hope that you do well on the Rituxan. Let us know how it goes. :)
Posted 4/27/2014 7:54 AM (GMT -5)
Msouchie thank you so much for the information. I got my letter on Friday saying I have been approved so I am hoping that I get my first infusion this coming week. I love this site it helps us all so much. I know what to expect now thanks to you and I will make sure to take me something to keep busy. So are you still taking the infusions and how long did it take to feel better from them
Hugs
Peggy
Posted 4/27/2014 4:56 PM (GMT -5)
Msouchie I'm sorry I see that u did say it didn't work for you. I'm so sorry to hear that. So u never got any relief at all from it. If u did do u remember how quick it dd work? Thanks for any info you can give me
Hugs
Peggy
Posted 4/29/2014 8:43 AM (GMT -5)
You're very Welcome Peggy! :)

No, none of the biologics worked for me except for Actemera 20 - 30%. With the other biologics it put my inflammation rate up, whereas the Actemera brought my inflammation rate down to the normal range(1 - 10). It was 2 infusions of Rituxan that I took. There was no point in taking more since it didn't work for me at all by then. Some People need the Rituxan by month 4 because their pain comes back by that time. I think it is only recommended to take it every 6 months. Feel free to ask your Rheumy or the Company about that.

These biologic medications do not work for everyone. My Rheumy was disappointed that they only worked for about 50% of his Patients. That is better than none,IMO. Some of the older drugs do not work on everyone either or some People may have allergies to them, etc. Some of the older drugs worked better for me thankfully. But I'm through all of those too.

As I mentioned, I hope that it works for you and anyone else trying biologics. It's wonderful to be able to get some relief from this horrid disease. That's good that you may be starting this week. I'll be curious how your meds work for you. GOOD LUCK!!!

There is another biologic coming down the pipeline in about 2 years. They've been working on it for a while.
Posted 4/29/2014 8:57 AM (GMT -5)
Thanks once again for responding to my post. I'm at home again today unable to work. Hopefully soon they will call for me to come get infusion.
Hugs.
Peggy.
Also I will post back here and let u know how it goes.
Posted 4/29/2014 1:32 PM (GMT -5)
I hope you get the call soon and that the infusion goes well.
Posted 5/15/2014 3:31 PM (GMT -5)
Carole just updating you on my rituxan infusion. All went well and I could def. tell a difference when I left. Not light night and day but a def. improvement. I feel even better today. Will go back in two weeks for another infusion. Said it was 1000 mg. I have not idea if that is a high dose or not as I am not familiar with this drug yet. If you or anyone else reads this and has had rituxan infusion before and can enlighten me as to how you did on this drug I would certainly appreciate any info...
Hugs and here is to an even better day tomorrow..
peggy
Posted 5/15/2014 4:48 PM (GMT -5)
Hi Peggy --

I haven't had any infusions, so I don't know if that's a high dose. I hope it works well for you, though. Thanks for updating us.
Posted 5/15/2014 7:10 PM (GMT -5)
MsOuchie, I wanted to let you know that the infusion went well yesterday I had no side effects with the exception of a little itching around my ears of all places....lol they gave me benedryl before I started then after I started itching they gave me an injection of it so that took care of that problem... I am feeling much better today still weak and have some pain but def. better....
hugs
peggy
Posted 5/15/2014 8:32 PM (GMT -5)
Good luck with it Peggy, I hope it works well for you.
After I came off orencia they were going to try me on rituxin but I asked to try humira again and luckily for me thats been working, not 100% more like 75% but its ok.
Best wishes, golitho
Posted 5/16/2014 8:34 AM (GMT -5)
golitho, thanks for letting me know. Im glad that the humira is working for you. I was so surprised when the orencia injections just quit working on me... this time it was very bad for me. Thank the Lord above that there are choices out there for us all and we don't have to suffer like the old folks used to suffer. Hope that you have a great day and a wonderful weekend.
Peggy
Posted 5/18/2014 3:37 PM (GMT -5)
MsOuchie I was wondering since you have been on the rituxan before... how long did it take you to find out it didn't work for you? I have felt some better but still pretty weak... I only had the first infusion on Wednesday of last week. So maybe I am expecting too much too quick. Just curious for any information that anyone could give.
Hugs and I hope you all have a pain free days...
peggy
Posted 5/19/2014 1:18 AM (GMT -5)
Hi Peggy:

Sorry to say but I don't seem to be receiving notices about new messages from the Rheumatoid forum. I hope that I don't miss too many.

Anyways, that's so great that you received your infusion and are feeling better. It is probably the Medrol doing that though. The Rituxan doesn't show it's first effects until about 6 weeks after the first infusion. Usually by 3 months, the full effects of Rituxan occurs and can last up to 9 months.

I was on Rituxan for over a year but I didn't feel any better while on it.

As I mentioned, these Biologics do not work for me. In fact they made me worse. Even the MTX worked against me this time. When I was young it worked okay.

The itchiness is a normal side effect although I didn't have that one.
Good that they got rid of it for you.

Wonderful to hear and hopefully you will continue feeling better until the Rituxan kicks in full blast and takes over. I really hope that it works well for you for many years. Thank you for letting us know how you did with your first infusion. :)
Posted 5/21/2014 8:28 AM (GMT -5)
I had asked about rituxin at one time.  I was on the TNF inhibitors (enbrel, etc...) for many years--they stopped working.  I tried orencia and was put on the injectables; they never worked as well as they could.  But I've recently started the orencia infusions and they work much much better.  IN fact, I feel better on the infusions than I've ever felt on the injectables.  My doctor told me that he has other patients as well that get much more relief from the orencia infusions rather than the injectables, but they are exactly the same dose.  He feels that the infusions provide a higher dose all at once, where the injectables are lower and distributed over time (1X/week). 

If you're scared to try rituxin--it does list some very scary reactions (my doctor won't prescribe it for his patients), you might try orencia infusions first.  The only side effects I get from orencia are the nonmelanoma skin cancers (the non-fatal kind).

Best regards,

Elcamino

Posted 5/21/2014 9:29 AM (GMT -5)
Hey elcamino thanks for the reply.  I am doing better as of right now.  Made it back to work yesterday for the first time in a long time.  Half a day baby steps but moving forward!   Im so glad to hear that the orencia infusions are working for you.  Ive heard good things from folks taking the infusions as well.  Seems that they do work better.  I go back for my second infusion next week..... I cant wait.  I had no reaction from it except a little itching which they took care of immediately.  Still weak and have some pain but overall much much better.   Hope you continue to do well with yours.

Hugs

Peggy

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