Actemra (tocilizumab)

Receiving my Actemra infusion, 1/26/15


Monday, January 26, I had my first Actemra infusion. I’m not sure how to feel or react to this, exactly. Hooray? Congrats to me? Holy shit? THIS BETTER WORK? In any case, it’s a new chapter in my RA life. Actemra is now the fifth biologic drug I’ve tried since I first began biologic injections/infusions, starting with Enbrel in autumn 2002. I can’t believe I’ve been on them that long! Luckily (I’ve been very lucky) I haven’t had problems with side effects with any of these still fairly new medications.

Before beginning Actemra on Monday, I received bi-monthly Remicade infusions for about seven years (for the second time). I had been on Remicade once before from approximately 2004-2007, then I switched to Humira injections because I moved to France briefly to teach English (my doctor and I decided it would be easier to do injections in a foreign country rather than trying to sort out getting infusions while abroad). When I returned home to Minneapolis from France, I switched to monthly infusions of Orencia, basically because I really hated giving myself shots; I never got used to doing it. I can’t remember how long I stayed on Orencia, but my rheumatologist and I decided that if I was going to stick with I.V. infusions, Remicade seemed to work a bit better for me. So after a brief time on Orencia, back to Remicade it was.

A few months ago my rheumatologist and I finally decided that it was time to change my RA treatment and try a new biologic. Remicade just didn’t seem to be working that well anymore. I was on prednisone more often than I wasn’t due to frequent and stubborn flare-ups. One of our main goals for my treatment has always been to stay off of prednisone. And now that I try to remember, I think it’s been at least a few years since I’ve been off of it consistently for more than a few months at a time.

So! While starting a new medication can be scary and worrying, I’m also trying to be hopeful and positive that Actemra will be a good turning point in helping to stabilize my RA and maybe even put me into “remission” for the first time. I’m so ready to have a good long stretch of significantly decreased pain and flares and especially a nice lengthy period of NO PREDNISONE.

I hope this works.

Today is her birthday

I can’t believe another year is gone and it’s already my birthday again. Crazy! It’s also crazy to think that a year ago today I had a synovectomy on my right ankle (what a nice birthday present, eh?). The surgery was not a great success and my ankle (both actually) is still in a lot of pain and I’m very limited in how much and how long I can stand and walk.

After 2.5 years of living with the agony and worry of inflamed and intensely painful ankles, I felt such relief when I found the orthopedic ankle surgeon who performed my surgery. I thought that finally this hell would end and I would be on my way to healing and recovery. However, now a year later, it seems this is not the case.

My ankles (both are painful and inflamed) are a bit better and the right one is a little better, but nowhere close to being normal and pain-free. I recently got the name and number of an orthopedic doctor from my rheumatologist, however I have seen this orthopedic doctor once before and he referred me to my ankle surgeon. My rheumatologist suggested that I see him again, now post-surgery, and see what he says and that maybe something else can be done. I’ve been meaning to call and set up an appointment for two weeks but I either keep forgetting or maybe it’s just subconscious hesitation.

Over the last two years of this mystery-ankle-nightmare, I’ve seen so many different doctors, specialists, orthopedic doctors, podiatrists, physical therapists, etc. How can this “problem” be so difficult to correctly diagnose and treat? My ultimate fear is that it is indeed arthritis-related and the pain and inflammation and disability will be permanent (which means not being able to walk or function like a normal person ever again).

I know I can’t give up yet I can’t even begin to express how exhausted and tired I am with trying with this. Life has turned into a giant schedule of doctor’s appointments with conflicting, confusing answers or no answers at all. Do I want to get back into this “game” of musical doctors again? I’ve been in pain yet limping along fairly well since returning from France in May, trying to occupy my mind and time with other distractions. I know the situation can’t stay like this though. So yes, I will give the doctor a call and set up an appointment, although I fear that once again I will only get no answers or the wrong ones.

On a positive note, I seem to be tolerating the Orencia pretty well. I haven’t had any serious side effects or any side effects at all, it seems. My immune system is quite weak and frankly is pretty shitty lately – hence my weird sinus sickness and now nasty cold. Let’s hope the Orencia kicks in soon and kicks the inflammation right out of my poor little ankles. That’s right, I said “poor little ankles.” They used to be little, anyway.

So yes, today is my birthday. Each year I find birthdays to be more depressing and weird than the previous ones. Maybe that’s normal? I don’t know. Tonight my family will go out for dinner to celebrate not only my birthday but my dad’s as well (his birthday is today too). It will be nice to go out together and it will be a relief to not have the fear of surgery looming ahead. The best birthday gift would be to have normal, healthy ankles again, but I don’t think I’ll get that, unless some miracle happens. However, friendship, love, support and understanding from the people in my life would be a close 2nd, I’d say. Or maybe even better than good ankles.