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Tag Archives: immunosuppressants

Battle Report

polly pocket lizards

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.

BELSOMRA UPDATE:

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

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Throat Ulcers: Because why not?

money slothThroat ulcers, because why not. My throat has been killing me for 2 weeks and I’ve been toughing it out until today. I went to the urgent care near my house [I don’t have a GP in town yet] and it took him all of 10 seconds to tell me I had major throat ulcers that “could have been brought on by anything’ I then told him about the chemo vs. thrush sores that have been an issue and he said it wasn’t related to either but could be RA based or a complication from theĀ immunosuppressants. He said it could be a long term issue and that he could treat but not cure them. So as the situation stands I’m just using a ton of magic mouthwash [which is a liquid combination of Lidocaine, Kenalog-4, and diphenhyd] and hoping for the best.

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Join me as I live my life with Rheumatoid Arthritis, Lupus, and Fibromyalgia

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Thought Catalog

Thought Catalog is a digital youth culture magazine dedicated to your stories and ideas.