It has been a while since my last post, and I apologize for that. This post is another farewell, but this time to Simponi www.simponi.com. After four injections, there was absolutely no improvement in my symptoms; not even a small reduction in fatigue, swelling or stiffness. As a matter of fact I have been in more pain and more fatigued. (Plus that auto-inject pen was not easy to operate). So, my rheumy and I decided that it didn't make sense to continue taking the Simponi if there were no benefits.
Honestly, I hadn't really expected any improvement (perhaps that was the wrong attitude from the beginning) since Simponi is a TNF (tumor necrosis factor-alpha blocker) blocker like Humira www.humira.com, which plateaued and was not an effective treatment for me. My rheumy tried Simponi because he states that sometimes patients who have used a TNF blocker in the past will have better results the second time around.
So now, what course of action do we take? There is a drug study for another IL-6 biologic and we decided since I had such positive results on Actemra www.actemra.com which is also an IL-6 biologic, I would be enrolled in the study. For the next three months I cannot take any biologic drug while we wait for the Simponi to completely leave my body. Yikes!! this looks like a scary place to be (again!). Over the past 1 1/2 years my life has been a series of deja vu moments from going months with a biologic to saying farewell to one biologic after another.
I am so ready for this roller coaster to stop because I WANT OUT OF THIS INSANITY!!!!!!
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.
