Wednesday, July 31, 2013

Actemra

So this blog was going to be about books, but what can I say when you live with RA it is always first and foremost on your mind.
I have started actemra. It was a hard decision to finally give up on Orencia, but too many side effects and not working well enough and about a year and a half later I finally decided it really wasn't for me. I just read a wonderful blog by Arthritic Critic that inspired me to write about my med change choice.
When I decide to change meds I research the new choices and always lean towards one more than the others. This time I was leaning towards actemra, for me it was the next level step, orencia is 1/2hr infusions, actemra is 1hr infusion so in my mind next step. So I researched like crazy, talked to people taking it and have this pumped up in my head as THE MED for me. That's right guys this is the one that will work, the one that will make me forget I have RA I will be able to do all the things in the obnoxious commercials for RA medications that make you want to vomit because no one with RA can do that. Well actemra is going to do that for me. Want to know the best part...it actually lists that it helps with fatigue and fever, no other med I have seen lists that so you know it's good. Well I started 2 months ago and I haven't had any changes yet. Ok that's a lie I had 2 less painful days that's right 2 whole days that I felt less pain than I have in say maybe 2 years. I'll tell you if you don't have Rheumatoid Arthritis those 2 days will keep me believing for at least 2 years. Those two days were amazing, a paradise, heaven on earth right here for me to experience...but then wham!!! 
Right back to where I was. I should explain the fever and fatigue has been bad enough lately that I can barely get out of bed, then when I am able I walk like I'm 120yrs old (If I can walk) mostly I hobble around enough to get from my bed to the living room, then occasionally from the living room to the bathroom, if you have RA you know that means doing as much as you can while you are up, so usually some sort of food that requires no effort and refill my water. At this point my teenage daughters are doing the grocery shopping, and my husband and daughters do most of the cooking. I feel like half a human and a burden to them, but what keeps me going...that's right those 2 days. I am convinced after the next infusion actemra will kick in and will be working. It has to, I have plans we are going camping which means swimming, river rafting, bbqing, family visits, nature walks and more, so it has to work.
I hope this isn't too sporadic and makes some sense as the pain is high and that causes major brain fog...but more on that later. For now just wish me luck on my actemra adventures.

6 comments:

  1. Good luck! I have a friend who is doing well on Actemra. After my Xeljanz mess I was to chicken to do Actemra so we circled back to anti-tnf for now. I have a feeling we are very much the same. How long have you been diagnosed?

    ReplyDelete
  2. I think it's very brave for 1 thing to even talk about it & show your weakness & 2 now people who are going through the same thing & haven't found the bravery can see their not alone in the world so nicely done love !!
    I'm not there on a daily basic but I hope you know I would shop for you too ;)

    ReplyDelete
    Replies
    1. Thank you Kenzie...I still think we need a streaming Kenzie tv in the house LOL :)

      Delete
  3. I'm the one on Actemra and currently writing a blog post about it .... hang in there ... it was gradual for me ... you could see changes up to a year from.starting it

    ReplyDelete
    Replies
    1. Thank you Shanon...I have my next infusion on Wednesday and that will be #3 for Actemra, which is THE ONE that will start it working...feeding it positive energy :)

      Delete