Orencia | Arthritis Information

Hi!

My name is Gale and I'm a 'newbie' to this forum. I was wondering if anyone is on (or has any experience with) Orencia. I was diagnosed with RA about 5 yrs. ago and have failed Enbrel, Humira, Remicade, and Rituxan.

I was initially started on Enbrel, which only worked for about 6 months. I was then switched to Humira, which did absolutely nothing. From Humira I went to Remicade, and it actually worked OK for about a year, but my rheumatologist was afraid of ototoxicity due to increasing tinnitis with each infusion. I was then put on Rituxan, and received 2 doses, but again, it did absolutely nothing. My lab values and clinical presentation actually worsened within a month of my second dose.

I am currently back on Remicade every 5 weeks, but the tinnitis is getting worse with each infusion. I'm pretty sure my rheumatologist will be taking me off of it at my next visit. He has mentioned Orencia, but he doesn't have any of his patient's on it...I would be his first. Is anyone here on Orencia, and what is your opinion? I hate the thought of monthly infusions, but I've got to find something that works.

BTW...In addition to the Remicade, I am also on Arava 20 mg. weekly (recently switched from methotrexate 20 mg), Medrol 8 mg, Lodine XL 600 mg. twice daily, and Ultram PRN...also on blood pressure, thyroid, and GERD medication.

Thanks so much!

Gale :)

Clarification of above - that's 100 mg of Arava weekly - five 20 mg. tablets every Friday.

Brisen39248.8743055556I have no experience with this medication but wanted to say welcome and to bump this up for you! Welcome to the board!! I'm sorry, I also have no experience with Orencia as I am on humira and mtx. Just wanted to say hi and welcome you!!Hi Gale Welcome! There is more than 1 person on Orencia who also uses this board occasionally, hopefully they will check in and spot your note. (I remember somebody who made it back to the golf course for 18 holes!) Hi Gale welcome, I had only 2 infusions of orencia.I had bad infusion side effects so had to stop.very disappointing as i am at the end of the line for biologics.side effects were chest heavyness,shortness of breath,high blood pressure. also had same when i was on remicade.It starts about 30 mins into infusion.I was at a infusion center and the nurses were right there with meds.being you are on remicade with no infusion side effects maybe you will have no problems. good luck and keep us posted on how you do.

Hi Jenny,

That's the problem...I AM having side effects with the Remicade. About 15 minutes into the infusion, my ears start ringing EXTREMELY loud. This happened with my very first infusion last year, but since the Remicade was helping me, my rheumatologist decided to keep me on it. Unfortunately, the ear ringing (tinnitis) is getting worse since I switched from Rituxan back to Remicade, and the ringing is constant now. I'm sure he's going to try and talk me into Orencia. He's afraid if I stay on the Remicade I might get ototoxicity and lose my hearing.

I'm sorry to hear you had such a problem with Orencia. Since you also had the same reaction with Remicade, it will be interesting to see if I have the same reaction with Orencia that I do with Remicade. Like yourself, I'm also at the end of the line as far as biologics. However, my rheumatologist assures me that within the next year or two there will be 3 new drugs released, so he's TRYING to keep me positive. It's just so darn discouraging sometimes, isn't it?

Brisen39248.8745138889 Gale, Im on humira now,it is working so-so.Still on 6mg pred. Hopped the humira would work better so i could get off pred.The RD will likely up my humira to weekly next week when i go see him. the bad side of humira is it makes me sweat something terrible.When ever i do anything physical my hair is soaking wet and i have sweat dripping down my face,neck,ect. too gross!!!! so i can hardly wait for him to up my doseage.

I hope the orencia works for you. I am taking remicade right now, with good results but recently had a flare.

Hi Jodi_Girl,

My mistake. I've only been on Arava a little over a month and I thought they were 5 mg. tablets. After looking at the bottle however, I see they are 20 mg tablets (triangle shaped) and I take 5 tablets once a week, so the total weekly dose is 100 mg.

This is how my rheumatologist prescribed it, but a friend of mine takes her's once a day. She takes 20 mg daily M-F, then nothing on the weekend.

Now I'm wondering if maybe I would get better coverage/results if I take it daily instead of all at one time??

Gale