Monday, August 24, 2015

Dear Anakinra/Kineret, I love you

I did labs this morning and was a little afraid that my blood tests wouldn't reflect how well I've been feeling...


But my sed rate IS FREAKING SIX.

It went from 40 to 6!

WTF.

I switched rheumatologists so that I could get on kineret. I knew that, eventually, this drug would be my goal. It has helped SO MANY people with SJIA and periodic fever syndrome and other autoinflammatory diseases.

I switched rheumatologists because my old one didn't want to use this drug. The injection site reactions were too big of a problem and it didn't help other patients they'd had on it - other patients who weren't SJIA or autoinflammatory btw. They were treating me as if I had a different JIA type.

If it was just between oligo and polyarticular, that would be one thing. The same drugs for the most part are used. Systemic is a different beast. MTX doesn't generally work for us and the TNF drugs only buy time.


I did see minor improvements when I was on Humira & Enbrel, but they both quickly quit working. The same with Cimzia. You can kind of see that here. The dip at the end of June 2012 was when I was on Enbrel and Arava, which I had to stop due to liver damage... and that's where we see the elevation in late 2012.


I had a rough go with some dinosaur bites injection site reactions during the second and third weeks of the injections, but they have cleared up amazingly quickly!

This is all so surreal. I cried for a good while the other night because I noticed, while fidgeting with my toes, that they were so malleable. Turns out they weren't swollen for the first time in 22 years! They were normal toes!

NORMAL

I had a similar moment with my ankle on the same foot.

And I even wore wedges the other day - five years to the day that I got my handicapped placard and said I give up (not that getting a placard means that - I literally put "I give up Arthur. You win." on facebook).

My new rheumatologist is amazing. I love her so much, not just for this but for really being a partner in my care and a friend.

I can't help but wonder though how many more drugs I would've failed with my old rheumy before they considered this. I wonder why I wasn't being treated with the right drugs. I wonder if it would be wrong (I know it would) to send them a message about how much better I'm doing now.

I'm so glad I stood up for myself. I'm so glad I had other ePatients telling me to be my own advocate. I'm so glad I had support to make all the changes I've made in my life in the last two years. I believe all these changes have gotten me to this moment - so close to giving Arthur the KO.

I'm going to go back to crying in my office.

Kineret.
Anakinra.
Lovely little daily shot.
I fucking love you.
Please stay working.
Get me into remission.
Make me better.



5 comments:

  1. I'm so, so happy this is working for you. Like tears in my eyes happy!

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  2. I'm so happy it's working for you! My neurologist and I punted a true Hail Mary Pass the other week after I was told there were no good options and I was likely screwed. I pushed to retry a medication I had previously failed, and another that has some hopeful research. I'm in a similar place both were worth it, I might be stumbling my way towards a sort of remission.

    It is awesome when that happens, and when it happens because we listened to ourselves and advocated for what we thought we needed.

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  3. Kirsten, hello! I found your blog via Creaky Joints and thank God I did. Your blog is amazing! You have the courage to write about stuff RA patients go through, however personal it is. I have been diagnosed with juvenile RA when I was 13 years old, and now I have it for 15 years. Most of the time I was on MTX and I'm currently on it, but the nausea kills me. I'm currently researching what new drugs are available and I'm thinking of switching my rheumatologist. My current doctor is stuck with MTX and doesn't want to change it to anything, even though it makes my life miserable. I'd like to ask you, if you don't mind, how is Kineret working for you? Is it effective and are there side effects? I live in Russia and here it is not widely used, I suppose due to the price. It would be great to know your opinion on it! Thank you so much for everything that you do!!!
    Kind regards,
    Olga.

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    Replies
    1. Hi Olga! I am SO glad to see that you are on Creaky Joints and now here too! MTX is a rough medication for sure. Kineret is working very well. My inflammation levels have been very low since this blog post, only varying by one or two points. There were some injection site reactions, but other than that I am not having side effects from it. It is a daily shot and so that is not always as easy at times, but I will trade the pain for that hassle! Sobi, the company that produces this medicine, may be able to help with offsetting some of the costs.

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