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Battle Report

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So I met with my rheumatologist today and learned several things; my RA/RD is fully active again, I have Sjogren’s syndrome [not a surprise], joint damage in my hands and feet, and my Fibromyalgia is fully active. Obviously most of these things are less than ideal, however we have a course of action. I am a fan of practicing reckless optimism, so let us explore! I will be changing my infusions from my IV Orencia to IV Actemra. We will be taking advantage of me not being allowed to have my IV for 8 weeks due to surgery for me to transition over to my new biologic. For those who are not in the know Actemra is an IL-6 inhibitor which works with a part of the immune system no other drug currently addresses. In addition to this I have had extremely dry eyes and mouth for months and finally asked about it, I was told I had sjogren’s syndrome which my doctor had several medical solutions to help with symptoms. We decided to just take care of the imminent RA issue for now and to explore these options at a later date. At present it appears the joints in both my hands and feet are finally showing signs of irreversible deterioration however we had been aware that we were headed toward that for some time, we had just hoped we could stave it off until I was a bit older. She strongly encouraged my foot operation due to the fact that they are re-aligning the bone, shaving the bunion, and evaluating the deterioration of the joint capsule. My foot operation is scheduled for December 14th and I am to be off my feet for 4-6 weeks. I only have the option of 3-4 weeks so we will be hoping for the best. My husband, younger brother, and close friends will be helping me not lose my mind I also have adult coloring books, movies, and Fallout 4 to help distract me. Due to my history with pain medication I will be attempting to go off of it as soon as possible. They want me on Oxycodone and Percocet for almost a month, we are aiming for less than 2 weeks.


DO NOT ACCIDENTALLY DISCONTINUE, I did this due to a refill error on my part, this caused me to not sleep for close to a week. Prior to getting it back into my system I experienced mild withdrawal symptoms that made me a grouch. After 3 days back on my regular sleep schedule, all is well with Belsomra and my world.

Remember: Power, wisdom, courage


3 responses »

  1. Maddie, thank you so much for sending this Battle Report to my email.  Wow.  I love your statement, “I am a fan of practicing reckless optimism…”  It’s so you.  It sounds as though you had a good, thorough discussion with your doctor, to come up with your course of action.  She does sound excellent.  As are you. I’ll be very interested to hear how it all goes, starting with the IV Actemra.  Well, actually starting with you bunion surgery.  You’ll have wonderful support, obviously.  And a lot of us cheering you from the sidelines and/or from distances. Love you lots, Mimi      From: RA Supergirl To: Sent: Saturday, November 14, 2015 10:15 AM Subject: [New post] Battle Report #yiv8640663761 a:hover {color:red;}#yiv8640663761 a {text-decoration:none;color:#0088cc;}#yiv8640663761 a.yiv8640663761primaryactionlink:link, #yiv8640663761 a.yiv8640663761primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv8640663761 a.yiv8640663761primaryactionlink:hover, #yiv8640663761 a.yiv8640663761primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv8640663761 | RA Supergirl posted: “So I met with my rheumatologist today and learned several things; my RA/RD is fully active again, I have Sjogren’s syndrome [not a surprise], joint damage in my hands and feet, and my Fibromyalgia is fully active. Obviously most of these things are le” | |

  2. I am so sorry that you are definitely in “battle-mode” (again). I, too, have Sjogren’s and I would really encourage you to also start treatment for that. I take Evoxac 2-3x day and it’s the one drug that I won’t go without — ever. You don’t realize what a difference it makes until you actually try it. It will make you feel better which better positions you for success for dealing with your other issues. Sending more reckless optimism and hugs your way.

    • Carla,

      I just saw your comment. What all does your Sjogren’s affect? Mine mostly affects my eyes, sometimes my mouth, and I have incredibly dry skin. In what way did the Evoxac help you?


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