Last week rheumy's office called saying "he wants to see you next week." Hmmm, well that has never happened before, wonder what he wants. Does it have to do with my recent blood work or is it about the study? Of course the anxiety started to do a number on my psyche - I really could have used some Lexapro, since I didn't have any I had to take a few deep breaths and let go and let God.
Tuesday rolls around and I make my way to rheumy's office (not an easy task on public transportation in NYC; think few escalators and even fewer elevators). Since we all love good news, I'll give to you first - there was nothing unusual about my blood work; bad news - I can't participate in the drug study. Because it is an IL-6 and works within the body similar to Actemra, rheumy doesn't feel comfortable taking a chance. While disappointed, I had to agree with him. I never want to go back to that feeling of having an elephant sitting on my chest.
We discussed the options: 1. start Rituxan, sorry I don't think so, can't wrap my mind around that at least not yet; 2. wait for next drug study, okay if it starts within next 1-1 1/2 months; 3. add Arava (as a stop-gap measure) and remove Tramadol (honestly, it wasn't really doing much for pain) from drug regimen. So I opted for 2 & 3.
I can't imagine how people used to think that docs had all the answers to me medicine is just an experiment on a really grand scale. You know, let's try this combo and if that doesn't work we can try this combo over here. I am not disparaging docs, after all where would I be without my trusted rheumy?; but you have to agree that it is all experimental and we are the animal looking for the reward (read as: magic bullet to remission).
We are our best advocates. Present me with the options and let me make an informed decision, after all it's my body with all it's aches and pains.
www.actemra.com
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!!!!!!
