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So it has come to this…

bioticsThe last month has been a little [lot] rough RA/Fibro wise. I had to be taken to the ER twice in 3 weeks [in 2 states] the combined trips resulting in 2 Benedril, 2 Morphine, 1 Torridol, 1 Ativan, 1 steroid shot, and an allergic reaction. I find this to be an unacceptable way to live my life, being in pain to the point of throwing up is rarely a good sign. Tomorrow I will be meeting with my Rheumatologist and Neurologist to discuss options with them though there aren’t many ways this could go. The most likely option seems to be being put back on Methotrexate, which I cannot express my hatred of enough. It made me so nauseous all the time. I am so very terrified that they will put me back on this drug that I’ve had a tough time sleeping for the last couple nights. More than anything I don’t want my boyfriend to have to worry about me/ see me in bad shape. I am actually kind of hoping this is Fibromyalgia related then we can adjust that medication instead of the MTX. I will update after my appointments tomorrow.

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FREEDOM

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RDJ alcohol and narcoticsToday I went to see my rheumatologist. At the beginning of the appointment I was straightforward in telling her about my trip to the Mayo and what they had told me regarding my lack of RA symptoms and the presence of Fibro symptoms. She was very attentive and listened to my whole spiel. I asked if this meant that we questioned my initial diagnosis of RA and she said no, she pulled up a chart on her computer showing my total swollen joint count over time and pointed out how many swollen joints I’d had initially and how they decreased over time as we became more agressive in our treatment. She checked my trigger points and said that they had not been this bad previously and showed me a chart of my previous positive trigger points, neither of us are sure why it is suddenly worse but we agreed that continued use of Lyrica and Tramadol was in my best interest [due to the use of Tramadol I am COMPLETELY off of the Vicodin!]. Then I asked the question I have been dreading and fretting over: “Can I stop my methotrexate?” For those just tuning in Methotrexate [or MTX for short] is a chemotherapy drug that in small doses is used to treat autoimmune diseases such as RA. It is very harsh on your body and I personally have had the unfortunate side effects of mouth ulcers and nausea. In short I would very much like not to be taking MTX injections once a week. So I asked her if I could stop this horrible drug AND SHE SAID YES! I am officially off MTX! This is kind of a big deal. I then asked about my other RA medication Orencia, she said that if my RA is still in remission [which she confirmed is what happened] in 6 months that I can discontinue Orencia! BUT she was very adamant about this disclaimer, once RA is in control getting back to remission after a major flare can be hard to come back from, so from here we proceed with caution. On a positive note I begin tapering off of the NSAID Celebrax tomorrow as they think it may be contributing to my stomach issues.

Additionally I went to the ENT that my mother is very fond of to seek out help for my oral ulcers, he was very helpful and gave me MEGA oral ulcer solution with more drugs in it than I can remember [mostly used on chemotherapy and radiation patients] and some oralgel paste. They are already getting better!

Clinical trials

After much hair pulling and gnashing of teeth I was finally able to get a hold of the people who actually run the study I want to be in. Here we are a little over a week and 8 phone calls and I’m officially in 🙂

Due to the fact that they need to see me ASAP in San Antonio I have to miss 3 days of school in my last 3 weeks of high school, this is unfortunate but necessary. My teachers have all cleared me to go so it’s all good. They will be testing my CCP and some other blood levels in an attempt to  officialize my diagnosis with blood work. After that they are going to test my blood over the next 3 years to track how my body reacts to my MTX and a new Ei Lilly drug that is a baff inhibitor that is injected. The doctor in charge is really excited about having an 18 year old in the study because I’m the absolute youngest possible and the only one under 25. In all seriousness this man really fought to get me into this study and I’m very excited that he’s giving me a chance to help find a cure and treatment for RA 🙂

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