Blood tests and a hand x-ray taken last week show that my RA is progressing rapidly. I have been on Orencia for more than a year. I thought it MIGHT be helping, but it clearly is not. Enbrel did made me worse. Avara did not work at all. I cannot take MTX for same reason as Enbrel. My choices are Remicaid, which I nixed because it is only infusion and the possibility of brain infection that cannot be cured. I'm always part of the "Less than 1 percent" of the people. My choice are… read more
I finally got my appeal accepted by my insurance for them to pay for Actemra. I will be giving myself a shot once per week. I picked it up two days ago but haven't worked up the nerve to give myself that first shot! Lol. I don't know why I'm so freaked out by it either. I used to take Enbrel but it was an auto injection pen. This is just a prefixed syringe you have to jab yourself with and I haven't worked up the nerve! I have heard great things about Actemra and that's why I chose to try It. Best of luck to you!
I've recently been enrolled in a clinical research study using Xeljans XR - the daily pill - and have been on it about three weeks. So far, the results are extraordinary! My first pill (along with continuing 25 mg of Methotrexate) was on April 4th, when I was in so much pain, I was icing wrists, hands, shoulders and right knee. As of April 20th (2 weeks/2 days) I was limber enough to go on a zip line, which involved climbing 67 steps of a spiral staircase to the first platform. Today I felt great - no ice needed. Tomorrow, I am going out with neighbors on their boat. No side effects so far, but it's early days. See if there are any clinical research studies going on in your area that are overseen by your rheumatologist. The Xeljans XR will be provided free, and it's worth a try.
I have been on xeljanz for about a year I guess. It seems to be working but I worry about all the crazy possible side effects. I went through CVS pharmacy to get it and they were able to get it free for me through a free program through xeljanz. Otherwise it would have been cost prohibitive.
I'm still waiting for an answer from my insurance company. It's frustrating. If they approve it, I'll go off the Actemra, which is what I chose, three months. It is not working. You can see the changes in my hands. We decided to do the Xeljanz, if insurance will pay. If yes, I will go off the Actemra for three weeks, get a shingles shot since my lupus has been stable enough, and then three weeks later I'll start the Xeljanz. I'm encouraged that there appear to be no side effects. I'm tired of the fatigue and nausea from these other meds.
I've been on 11 mg Xeljanz XR since late April and the improvement was so dramatic that they think Pfizer should be paying me to be their poster girl. It's a daily pill, and right now, I'm also taking Methotrexate, but that may be eliminated soon. I have suffered no side effects with the Xeljanz, and the improvements were evident within two weeks. I have gone from 16 of 18 joints being inflamed, to only 2, and those are in the fingers of my right hand. The real glitch is that Xeljanz is super expensive, and once this clinical research study that I'm in is over, I don't know if I will be able to afford the co-pay. If your insurance will cover most of the cost, I highly recommend that you try it.