Has anyone been on Orencia and have you had any positive outcomes? I have been on many RA meds and became allergic to Remicade. Remicade was my saving grace until I developed the allergy. That took about 14 months. Now my Rheumy want to start either Orencia or Rituxan. I am nervous about this. I have had RA for 24 yrs.
3/24/09 12:56pm
I haven't been on either, but as all other RA medications, I've heard very positive stories and some not so positive ones. Everyone reacts differently to different medications, so it's quite possible that you will do very well on one of these. I understand your anxiety -it's always difficult to try something new and worry that it won't work. You had the disease for a long time and you know that there's nothing for it but to jump in with both feet and cross your fingers. You could discuss it in more detail with your rheumatologist - remember they get paid to provide your medical care, so feel free to ask as many questions as you need to feel safe.
4/ 9/09 12:22pm
Hi MJ!
I took four months of Remicade and then had an allergic reaction. I have been on Orencia for 2 years and it's been great....except that my sed rate was 95 last mo and there is still no definition of knuckles in my hands. My Rheumy is uping my dosage of Methotrexate to see if that helps. I'm on 20mg now going to 30 and then maybe 40. Hopefully you won't have much trouble with the Orencia. Good Luck!
2/26/10 7:48am
MJ, Lot's of changes in the last year...Doc took me off the Orencia because even though I felt better she didn't like my numbers. My RA stayed around 50 to 60 and my sed rate at about 96. We switched me to Humira and I got hives so now I've been on Enbrel since November. In the process we've discovered I have Lupus (SLE) also so that may have something to do with the high numbers....which are still high. I kind of wish I was back on Orencia, since the numbers are staying high anyway, but I have to admit the Enbrel is more convenient. My kidney function came back bad so we're watching it. Dr. keeps pushing Rituxan but I'm scared of it. Some people have died of brain infections and it's crazy expensive!
I'm glad you are doing well on the Orencia and hopefully your numbers will continue to fall. Keep me posted on how you're doing and good luck!
6/17/10 3:04pm
Hi ~ I just came across your blog while I was doing research on Rituxan. I am 35 and have RA amongst other diseases. I have tried all of the meds you have tried and more. Nothing worked for me. I have been dealing with this since I was 19. My doctor and I contemplated the Rituxan and I finally went in for my first infusion yesterday. I was really scared to begin with and within the first hour of treatment we had to stop four times. We finally gave up and had to stop treatment all together. My eyes swelled shut. I couldn't breathe, and my ear drums started to swell and it was very painful. This was an instant reaction. I believe god stopped this for me. I wasn't meant to have it done. I do believe it is very dangerous and I wouldn't do it if I were you.
Of course, we have to explore other things now, but I'd rather that than be dead. Hopefully, you haven't started it yet. Good luck in finding what will work.
Angela
7/20/09 2:41pm
Hi MJ. Its been over 3 months since you posted this question and I was wondering which drug you decided to take and why. Also, how is your treatment going? As you experienced, I also felt great with Remicade until I became allergic to it. Tried Humera and am now needing to move on to another new treatment. Please share your experience if you can.
7/21/09 3:38am
Hello HighHopes!
I decided to go with Orencia. For a long time I could not make a decision. I researched Rituxan and in a footnote it read" If you are allergic to mouse protien do not take this medication" I did not know if I was allergic to mouse protien,so I googled mouse protien and I got several hits for Remicade. Since I had an allergic to the Remicade "I" decided I had a good chance of being allergic to Rituxan. When I asked the infusion nurses about my theory, they agreed it sounded logical. I started Orencia June2,09 and have had 3 infusions. They load you up the first month. My last infusion was June 30 my next infusion is July 28,09. They give me 50mg benadryl IV (incase I have an allergic reaction) which takes 15 minutes then give me Orencia which takes 30 minute. I am happy so far with the Orencia. My Rheumy says it will take 3-4 months and up to 6 months before we see the results she is hoping for. I no longer have to put pillows under my knees to sleep because my legs now go flat on the bed. I have not experienced this in 5 yrs. Although the results may come in 6 months I am willing to see how much I improve. My rehab dept is trying to order an electric wheelchair as I type. Those things take time. I am doing everything I can to try and not need it full time. I also tried Humira, once! We all respond different to these meds so they say, and I want to wish you only the best in the decision you make. I hope this has been of some help. Sleep well.
7/21/09 10:53am
Thank you for your very thoughtful and thorough response. I was actually in the process of emailing my doctor when I saw the notification for your response. I should ask him about the mouse protein issue as well since I developed an allergic reaction to Remicade. I have had Rh arthritis for half of my life now and I still find that I'm in denial. I attribute this mostly to the fact that I was in complete remission for about 4 years after I had a hysterectomy. It came back with a vengence however and here I am. I know that I need to join a support group also. I'm not only having to deal with my own fear of drugs and side affects but with my husband's fears as well. Calling my doctor now...thanks again. 
12/ 3/09 12:13am
Hello High Hopes,
Well it has been 6 months since since I started Orencia. After the first 4 months I started feeling better and now that it has been 6 months I believe it is working. My pain level went from an9 to a 4-5 sometomes a 3. but I still take my pain med in order to manage and maintain this pain level. The problem with Orencia is it takes so darn long before it shows positive effects. Were talking months. But I am happy with the results. Befre I took the Orencia I hurt all over every joint especially my knees which I also have osteoarthritis there. My knees are bone on bone. However I didn't realize how bad my knees were until the Orencia started working. Now, I do know I need my knees replaced because they are the only joints giving me so much trouble. Something new, I had a sleep study test done and it shows I do have sleepo apnea so I will need to sleep with a mask. I am told this will also help me sleep and more oxygen will get to my brain and joints and my pain level should go down again. I hope all this helps you a bit and good-luck with your journey. Please keep in touch. MJ
7/30/09 9:31am
I have been on Orencia almost 2 years now and it has been working great for me. I have been on enbrel and remicade and humira. My next one when orencia stops working will be rituxin but I am hoping orencia keeps working for me awhile longer.
12/ 2/09 4:28pm
Hi,
I went through Enbrel and Humira and then Remicade for treatment of PA. It was great until I developed an allergy. Despite pre-meds including IV Benadryl before infusion, the allergy got worse each time until it was pretty scary. I then went into remission for about two years, on Plaquinyl only. Had a few minor flare-ups, then a major one, treated with Prednisone, which prompted the decision to start Orencia. Interestingly, after the flare-up, my symptoms disppeared. No pain, stiffenss, swelling etc. I also am in some denial. Today I started Orencia and had some mild allergic syptoms. Will premedicate next time, but I'm not optimistic.
2/28/10 6:20am
I was so excited when I saw this site and question. But, no one really talked about the Rituxan, other than the one that spoke of the fear...because of the deadly brrain virus. Is there anyone out there on the Rituxan? My Dr. wants to start me on this treatment ASAP and I would love to hear some reassuring feedback. Because right all I seem to remember is reading those side effects and coming across the PML (deadly brain virus). Please, be out there and willing to share your experiences with the Rituxan. Thank You
2/28/10 7:03pm
Hi Princess,
I cannot speak from personal experience but I can tell you there were patients at the infusion center who were getting their 1st dose without complications. One lady was getting ready to leave at 3:30pm and had been their since 9:00a.m just for the infusion. My cousin was on Rituxan for quite some time for Lymphoma (cancer) without any problems. A lady at church is on Rituxan for cancer and has been for over a year without complications. She says she just feels a little yucky and tired the next day but then is full of energy after that. She is in her 70's and still does jazzersize dance. AND she goes every 4 weeks for the Rituxan because the tumor has a mind of its own. Another lady is a grandmother of 2 pre-teen boys and has a full-time job as a medical supply manager with RA and was pretty much not coming out of her room after work, now after the Rituxan she is very busy with those children....she is their legal guardian and is raising them on her own. Speaking for myself I might have gone with the Rituxan had I not been allergic to Remicade and Humira which are both monoclonal antibodies. I am with you. I wish there were more people who could share their "personal experience and the road they have been down in regards to "Rituxan". If I learn anything else I will write. The inviting about Rituxan for me is it is only given twice a year. However we all respond differently to meds. Good luck with this and if you hear anything or decide to take the Doctor recommendation please keep[ us posted. Hope you will be feeling better soon.
Also Princess, how many of your Doctors patients are on Rituxan and how are they doing? I would ask.
MJ
2/28/10 11:15pm
MJ, please believe me when I say you have a smile come across my face. I am naturally a positive person. But, my need to be an informed patient (smiling) can temporally get me down. I will absolutely me speaking with my Doc in detail before treatment begins. All of this is stemming from me doing my usual self-investigation in order to know exactly what questions I want to ask and/or make sure get covered. I have been under a doctors care since 1996. Things started out with just RA. Unfortunately, it seems like every year or two or three we add another autoimmune issue to the list. So, now I am living with the likes of Lupus, Scerlederma, Raynaulds and so on and so on and so on. The people taking my history tend to need extra sheets (smiling, again). I try to do as much of that as possible; the siling thing. Back to the Rituxan, sorry. My most recent blood work from Wednesday came back and my SED rate is back up to 110. It floored me! I am just not as symptomatic as I usually would be. I just got out of the hospital in January and I feel so much better than I did then...110 knocked me for a loop. I had been forewarned that if my SED rate did not get under control, this treatment would be considered, but I feel good (all things considered-I have felt worse, that's for sure).
My research has not help much. It has stirred up more questions than anything. So, to read all your examples of people functioning well on the treatment was so inspiring. I love best the one about the lady keeping up with all the children. I so miss being able to work. And every time I feel good, I want to run out an do all these "normal" things...which n the end leave me un-naturally exhausted. Then I am reminded that though I don't "look" sick, I very much so am. But, I am a fighter. I am resolved to look at Rituxan as just another weapon in the fight against all these auto-immune issues. These issues give a completely new meaning to learning to love your self.
Thank you again, MJ. I will close my eyes with a smile on my face tonight thinking of all those examples of people handling this treatment well. And believing that I too will be a poster child for Rituxan (still smiling).
Be Blessed and have the BEST Monday ever!
1/10/12 11:27am
Hello,
I am 39 years old and have had Rhuematoid Arthritis since 27 years old. 6 months after my first child was born. I have been on methotrexate, arava, enbril, humara (don't think I spelled that right), somponi, and now on Rituxan. I had great results with arava, but had to change doctors after my second child was born and this new doctor talked me into Enbril. I HATED Enbril, not that it didn't work but I am just not a shots person and to have to do it every week was stressing me out and I would put off taking the shot. So, basically I wasn't taking the medicine....sooooo wasn't getting better. The Humera hurt the most. Somponi worked great!! But I would forget to reorder (it wasn't an automatic shipment like the others). All these meds pretty much worked but I just wouldn't do the shots and stressed myself out. Now my doctor put me on Rituxan. Been on it for about 4 months. Well, no allergic reactions at all. The first infusion took 8 hours. Second infusion took 6 hours. Which I don't mind...the cancer center is a beautiful place and very peaceful compaired to my crazy house of 3 boys and all thier friends...lol. But I only feel slightly better. My knees are better and I can go up stairs again and get off a chair without crying. But my shoulders, ankles, wrists and fingers are just as bad as when I was first diognosed. My doctor's appoinment with my Rheumatoligist is today and I think I'm going to talk to him about Orencia. But he did say it could take up to 6 months. I just have a family to take care of and haven't been able to be the mom I should be.
Hope this may help someone.
Cali girl
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By MJ— Last Modified: 01/10/12, First Published: 03/23/09
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Hi Linda,
It's been almost a year since your post. I thought I would connect and see how you are doing. I have been on Orencia since June 09 and doing much better. My sed rate is running about 50 down quite a bit from 126. Your words were encouraging. My Rheum is still not satisfied with where I am but I am doing better so we will see what she has to say next visit.