This past Wednesday I went to see my rheumatologist Dr. C. I had been having a lot of pain, stiffness, swelling and more weakness. My appointment was for yesterday originally but I was on the cancellation list, and they called me on Wednesday and said he wanted to see me at 3:15 so I went. He said that I looked absolutely miserable and that my disease was not looking good. He wanted me to stop my Azathioprine/Imuran and wanted to talk to me about other treatments, since the Cell-Cept and Methotrexate weren't working. I asked about a lower dose of the Cytoxan chemo, but he said that it would up the cancer risk much more, and its like when am I going to get my tumor. He wanted me to consider going back on one of the biologics, not the anti-TNF's cause of the protein that prohibits me from absorbing those medications. We decided on a medication called Actemra, that works on a part of the immune system known as IL-6 or Interlukin-6 a protein that plays a role in inflammation. I have never had a medication that targets this particular protein before, and this drug is used for RA. Because I have multiple autoimmune diseases Dr. C also wants me back on IVIG (intravenous immunoglobulin therapy) which are made up of immunoglobulins/plasma donated from other people. I have had this treatment before a few years ago, but developed a rare reaction known as Aseptic Meningitis, where I get an extremely bad headache and uncontrollable nausea and vomiting and have to go to the ER and get IV fluids, pain meds, and anti-nausea medications. They stopped the IVIG because of the reaction and it wasn't working. So as you can imagine I'm a bit nervous about restarting it. The dose they will give me, is that of patients who receive it for immune deficiency conditions, as autoimmune patients get a higher dose. I will also be getting good premeds, as well as Solumedrol (steroids, either before or after or both), these should all help me not have the reaction. This is extremely key because with my swallowing issues aspiration pneumonia could be deadly for me. The GI team told me don't throw-up, not don't try, but don't. He said that our goal is not remission but to slow the disease down, and to keep organ function. As you can imagine my family and I are just trying to take this all in. My mom and I weren't really that surprised that he changed my medication, as the Imuran wasn't doing that much for me. Of course what was surprising was that were going back on the IVIG due to the reaction that I had last time. I am a bit nervous about restarting this treatment, but I trust my rheumatologist Dr. C, and my Hem/Onc doctor Dr. CB. I know that they are going to take good care of me so that I can take this treatment safely. I'm also putting my absolute trust in God, and know that he is guiding the doctors and nurses to know what the best way is to help me. By trusting and having faith in God, I can be content and at peace knowing that I am making the best decision for me. Proverbs 3:5-6 says, "Trust in the Lord with all thine heart; and lean not on thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths." This helps me to know that when I trust in God, that He will make it evident as to what path I must follow and that gives me great peace. By trusting have having faith in Him, I know that I am making the right decision, and that gives me great comfort.
On another note, my grandmother is doing well. She had an appointment with her surgeon Dr. Graham, and he says that everything is looking great. She has begun PT here at home and is making great progress, and on the mend. Thank you all for your continued love, support, and prayers for our family during this time. Each one of you are a blessing.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
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