Well, do you want the bad news first or the even badder news first? I have had to say farewell to Actemra (boo hoo, boo hoo).
This was the first biologic that had a very significant effect on my joints, especially my larger joints - hips and shoulders. I first tried Actemra January 2010 - May 2010 and developed some strange problem with my lungs so I stopped taking it until the docs (pulmo & rheumy) could figure out what the problem was and to fix it. Well that took until about December 2010, needless to say that I experienced some of the worst flares during that time period. The pulmo doc finally diagnosed me with RAD (reactive airway disease) and asthma, and found the right combo of meds to get it under control.
In January, while at the pulmo doc's office, we had a phone conference with my rheumy and all decided that it was okay for me to re-start Actemra. Yippeeee!!!!
I couldn't wait for my first infusion. That went off without a hitch and then I had my second infusion in February, again all green lights. Well ... by the end of February I was having problems with my lungs again. I guess that definitively linked my lung problem with Actemra, so once again I had to stop Actemra.
My rheumy said we had to decide which biologic we were going to try next, so I searched the Internet to review all of the drug options available for RA. I looked long and hard at Rituxan, but boy oh boy those side effects are scarier to me than for the other biologics. The only appeal was that you get an infusion 1x every six months, I was even willing to sit through an 8-hour infusion session.
At my next rheumy appointment I told him I had done research and was very scared of Rituxan, while is reason for having that biologic as a last resort was different from mine, we both agreed that it was not the right one at this time. We discussed that I had taken a biologic that worked on IL-6 (Actemra), T-cell (Orencia), and a TNF blocker (Humira). He said that sometimes when you go back to a TNF- blocker some patients have success, so we decided on Simponi and the approval process started.
I will let you know how long I have to wait for approval, and how my first injection goes. Tell then, gentle hugs.
Thank you so much for sharing your story, I too am struggling with RA. I now have some cervical involvement that has the Docs running around a bit....possible surgery in my future. I take Enbrel and MTX weekly by injection, and have just had Cymbalta added to the mix of pills I take. I salute you for sharing your stories and helping to spread awareness about RA.
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