Rheumatoid Arthritis Support Group

Tx:

l) Orencia - I'm looking into it for myself. A friend of mine is on it and thinks it is absolutely wonderful - pain gone and no discernable side effects.

2) Alternatives to Orencia - there are tons of drugs. Humera, Enbrel Remicade, Methotrextate are some of the heavy hitters. There is also Arthrotec, Mobic, Plaquenil, and I can't remember all of the others. Do some research online and you will find tons of info - try arthritis.org for starters.

3) New doc - if you are not happy with yours, start looking. You need a rheumatologist that you are comfortable with, who is supportive and gives you information in a way that you can understand it. If you can't understand him or her, that person is not doing the job right.

Good luck and many hugs,

Lynne

I've been on Orencia, starting my 11th month of treatment. While it hasn't been the total remission I was hoping for, I do function really well for about 2-1/2 weeks of the month after I get my treatment. This is certainly a blessing.
Words of advice: DRINK PLENTY OF FLUIDS before your infusion. The Orencia will give you nasty side effects if you are not well hydrated. The trick for me has been drinking about 64 ounces of Gatorade before my infusion. If I don't do this, I end up with a sick, nasty feeling, nausea and severe headache.
They also premedicate me with Zantac, Claritin, and tylenol. This has helped immensely, also.
Lynne's post was right on, there are other options if you haven't tried them already. One that she didn't mention is Rituxan.
I agree if you are not comfortable with your current doc, its time to find another. Best wishes and let us know how you are doing!

I should have remembered Rituxan - Doug's on it so you might want to check with him. He seems happy with it - he's bc2.

Lynne

Did somebody call?

Hi, I'm taking Rituxan. It's been a Godsend for me. I failed both methotrexate and Remicade, or rather, they failed me, so a bunch of potential drugs were ruled out. I had my first treatment in April, and it took 2 months to bring me to "good," but I've lasted all this time. I've been in a gradual decline for a couple of months, but part of the downturn is due to my having to stop ibuprofen, due to it being implicated in potential kidney issues. I'm going to start my 2nd treatment on Thursday.

Rituxan works by depleting b-cells, which play a role in joint inflammation. It was originally developed as a cancer drug for non-Hodgkins lymphoma patients, but approved for use as an RA drug in early 2006. It's newer than most of the other drugs, so practically all the information you will find is based on clinical trials. There are fewer side effects associated with this drug than most of the others, but some are heavy hittrs. Rare though. I have had zero side effects.

I can only begin to tell you how spectacular this drug has been for me. I have felt as though I've had no limitations, although that has waned in the past month. I have had early morning pain in many joints, as I always have, but from June into September, it was almost unnoticable. I was able to regain aerobic and strength conditioning, able to hike at will to high places, come home at the end of a hike and prepare dinner. It's been an amazing ride.

I'm not sure Rituxan would be available to you if you're turned down for Orencia, but keep it on your horizon, should you have the same kind of drug failures that I've had.

I wish you all the best in getting approvals. I just went through a 2 1/2 week period of agony, wondering if I was going to slip through the cracks, but I found out yesterday that all is OK. I hope you have a similar experience.
Doug

I've been on and off Orencia for about 15 months now. I started it in February 2007 and then moved across country in May 2007. Insurance got flaky so I didn't start taking it again until March of this year. Then I moved across country again. Since then, I missed three doses due to upper respiratory infections, one of them pneumonia. However, I've had two infusions in a row and hope to have a third next week. I haven't yet noticed a difference, but I hope to soon. We were trying to wean me off the Prednisone and I got down to 2 mg, but the pain was so bad, the doctor bumped me back up to 3 mg. I currently have bronchitis (everyone in the family has it, I came down with it last) so am on antibiotics again. I hope this starts working so I can get off the prednisone entirely.