Thursday, April 30, 2015

Therapeutic Thursday: physical edition

I haven't done my Cimzia shot since... um... like the beginning of March? Maybe earlier?


Yeah...

Part of it is that I had bronchitis and had to skip a shot for that, and then I was out of the state for Sam's surgery and my shot was not even close to the top of my priority list.

The other side is that, of course, it's not working well anyway.

It's hard to admit, but there it is. I end up with side effects for 3-7 days, have an okay week, and then just have to inject again. It's counterproductive to have a shot that causes more problems than it solves - and this hasn't done well at all for reducing my inflammation.

I had labs when I got back from Cali that showed an increase in my CRP and my sed rate - even from when I had bronchitis. Clearly, even though I feel well right now, I need to have a medication.


One of the reasons I switched to this rheumy in the first place was because my old rheumy's office would not consider the SJIA/Still's specific medications like Actemra or Kineret for me. It was frustrating to know that there were medications out there that would likely help me more and they instead put me on a third TNF drug, which is not very common. They generally move on to another class once two of a certain class of drug has failed to work for you.

The rheumy asked, via MyChart, if Kineret would be something I'd be willing to do. I sent back a short list of meds, and she sent back more info on Kineret. It sounds like that will likely be my next step.


The thought of going from bi-weekly shots that I dreaded to daily shots doesn't quite have me enthused... but in comparing the drugs I suggested, this one does look as though it will be the best for me for what I need right now.

So today, I get to meet with my rheumy to discuss... and then have a meeting with my therapist right after to prevent the mental breakdown that almost always seems to accompany a change in medications.

It's a good change, but it's another point where it feels like I'm a failure. I know logically that the medication has failed me, but lingo always points to the patient failing the drug.


Cimzia was never going to get me to remission. It helped mildly for a short time, but wasn't in it for the long haul, and that's okay. Kineret could be, for me, a shot at remission. I'm willing to deal with the risks, to put up with mild injection site reactions and daily shots, for the chance at a more normal life.


2 comments:

  1. Kirsten,

    Good luck with the medication switch. Kineret has been a life-saver for me. Literally. The first 6 weeks were challenging, but go slow and be patient. I noticed major improvement in my inflammation almost immediately. http://patientphd.com/2014/06/19/a-year-with-kineret-anakinra/

    --Megan

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    1. Thank you Megan for sharing! This makes me a lot less nervous about the eventual switch!

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