Biologic Medications for RA: Actemra, Rituxan, and Orencia

Lene Andersen, Health Guide

4/19/10 1:25pm

Excellent post, as usual! Thanks for doing all the research.

Lisa Emrich, Health Guide

5/22/10 11:00am

You're very welcome. I hope that these posts are useful to folks looking for comparative or general information.

Lynnk70

5/21/10 9:56am

I have been on Orencia for over a year. I have responded very well and have had no side effects. It is expensive but I have been involved in a program that covers the co-pay which helps tremendously. It is inconvenient to have to have the medication IV, but I am pleased with the results.

Lynn

Lisa Emrich, Health Guide

5/22/10 11:00am

Lynn,

That's great that Orencia is working for you!! Yes, having to go in to get an infusion is not the most fun, but if the medication is working than it is worth it. Excellent infusion nurses who get an IVs started the first time are also invaluable. :)

Chuck

5/22/10 6:08pm

I have been on Orencia for about four months with excellent results. Hopefully by the end of next week I will be off of Prednisone for the first time in four years. I still have some pain but only minimal swelling after working with my hands. I'm back to much of the yardwork that I had to reduce severely over the past years. So far,so good.

Lisa Emrich, Health Guide

6/ 1/10 4:45pm

Chuck,

How is it going? Are you off prednisone now and feeling okay? Just checking. Glad that Orencia is working for you.

Chuck

6/ 1/10 7:37pm

Hey Lisa

Thanks for checking on my progress. I have been tapering the Prednisone for several weeks and stopped completely four days ago. Still have some pain but I can deal with what I have now as long as I am careful with my activities. If this continues to do well the next target will be to get off Methotrexate.

Thanks for the medication articles you wrote, I know it took a lot of your time and they were very helpful.

Thanks

Chuck

Sherri Edgar

6/ 1/10 4:40pm

My son recently had his 3rd Orencia infusion. After each infusion he has experienced severe headache and sore throat along with vomitting for 2-4 hours. He is 8yrs old and has stated that this is the first medicine that has made his bones feel better, but he hates the side effects he experiences. He had no success with Enbrel, Humira, and Remicade.

Lisa Emrich, Health Guide

6/ 1/10 4:47pm

Sherri,

Is that right, your son is 8 years old? My goodness!

During the infusion of Rituxan, I get a reaction (similar to an allergic reaction) that we have to treat as the same time. Is there anything which your son's rheumatologist might recommend that he do to lessen the side-effects? ie. Would a dose of Benadryl beforehand help the sore throat? I have no idea the answer to that question. Ask the doctor if anything can be done to make it easier.

Sherri Edgar

6/11/10 2:15pm

Thanks Lisa! Yes he is 8yrs old, but he is a trooper! They have given him Zofran during the infusions to try to help with the vomitting and they have said Benedryl may help but he refuses to take any extra meds once it hits him and its starts so fast. We thought after the last treatment which he received 2 doses of Zofran we were in the clear but I guess it just held it off longer. He started getting sick about 930 pm. He says if it helps him to feel better on a daily basis he will deal with the one day of sickness. I just love that boy! I wish we could have that spirit.

Texas Tracy

1/11/12 11:42pm

After trying both humera & simponi, my doctor put me on orencia. After starting the infusions, i and others noticed a difference in me. I was still having bad flares, but most notable was that i "wasnt the same". It seemed to affect my personality. I became extremely forgetful, which is unlike me. Then i had a major flare that brought me to tears & walked into my doctors office. She took me off orencia and put me on remicade. I applied for the remistart copay assistance program, had 5 infusions, then received notice that my patient portion was less than the programs allowed amount. Remistart reduces your patient portion to $50.00 per infusion for the firstb5 infusions, then it jumps to $150.00! My co pay is $150, which is why i applied for remistart! Remicade was starting to work; my flare ups werent as bad and they were getting fewer & farther between, and now i have to stop remicade because of the cost. Now im looking at talking to my doctor about actemra, hopefully, this will work well like remicade did. Actemra has a better co pay program than remicade. Its sad that i now have to change based on cost. All i can do is hope that this one works as well as or better than remicade!

Texas Tracy

1/11/12 11:54pm

Sorry for the double post. Also, as far as the cost, i looked into other co pay assistance programs, but i dont qualify based on income. My husbands income pushes me out of the financial cap they have, even though he considers his income "his" and not mine, these programs still takes his salary into consideration even though i dont "benefit" from his salary.

Lisa Emrich, Health Guide

1/12/12 12:03am

Tracy,

That's very interesting to hear about your experience with Orencia. I've not heard many people talk about taking this particular medicine. (If rituxan stops working for me, Orencia would be my next drug to try.)

It's frustrating to hear that the Remistart program will not help to lower your out-of-pocket costs any longer. If someone's copay is something like $500 (a number I'm making up), then having to $150 per month sounds not so bad. But if $150 is your copay already and you can't get help, then it is frustrating for sure.

Coincidentally, the Arthritis Foundation posted a survey today asking for arthritis patients to share information about their out-of-pocket medication costs (especially if they are high). You can complete the survey which is located at:

http://www.surveymonkey.com/s/5LMY7BG

If you get a message that your explanation doesn't fit the right format, then try shortening your answer. That's something I figured out by trial-and-error when completing the survey. You should definitely share your story though.

I wish that there were another way for you to continue Remicade if it is working so well for you. Maybe try to see if your county has a program to help. I was surprised by that my country offered limited grants for patients who needed help paying some medication costs.

Let us know what you learn.

Texas Tracy

1/11/12 11:46pm

After trying both humera & simponi, my doctor put me on orencia. After starting the infusions, i and others noticed a difference in me. I was still having bad flares, but most notable was that i "wasnt the same". It seemed to affect my personality. I became extremely forgetful, which is unlike me. Then i had a major flare that brought me to tears & walked into my doctors office. She took me off orencia and put me on remicade. I applied for the remistart copay assistance program, had 5 infusions, then received notice that my patient portion was less than the programs allowed amount. Remistart reduces your patient portion to $50.00 per infusion for the firstb5 infusions, then it jumps to $150.00! My co pay is $150, which is why i applied for remistart! Remicade was starting to work; my flare ups werent as bad and they were getting fewer & farther between, and now i have to stop remicade because of the cost. Now im looking at talking to my doctor about actemra, hopefully, this will work well like remicade did. Actemra has a better co pay program than remicade. Its sad that i now have to change based on cost. All i can do is hope that this one works as well as or better than remicade!

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