Greetings from my world post Rituxan infusions! I started Rituxan in August and received two loading dose infusions 14 days apart. Rituxan works to deplete B-cells in the battle of autoimmune disease. I am seven weeks post infusion and I am feeling so much better. For the 1st time since I was diagnosed in 2009, I feel that I am on a treatment that has made a significant impact on my disease process but it took coming to the end of the road! Rituxan was the drug of last resort in my treatment as I have tried almost all the known treatments available to me. My next infusion is in late January 2017. The Rituxan infusions will be every six months as needed with weekly injections of Methotrexate.
From May – August of 2016 I was walking through hell as my diseases exacerbated and my treatment failed on Actemra. We’ve all been there: the sleepless nights, the worrying if this is your new reality for the rest of your life, the unbelievable pain, the impaired mobility, and the depression that threatens to swallow you. My seronegative rheumatoid disease and it’s ugly step-sisters were all aggravated in turn causing my diabetes to spiral out of control with blood sugars averaging 400+, and all of that tripped off my heart issues causing episodes of angina.
I saw my cardiologist in May, shortly after my 49th birthday, and he put his foot down and told me I HAD to get the autoimmune diseases in check or I was going to have a heart attack!!! That was very sobering. As I have mentioned in previous blogs, I was disgusted with the rheumatology care in my area. As a result I had seen my Internal Medicine MD and an Oncologist to manage my rheumatology care for the last year. My cardiologist told me something had to change. The pain and inflammation was too much and was stressing my heart. He also told me that the diabetes treatment needed adjusted. I left there and made appointments with my Endocrinologist and Oncologist.
Mind you I was seeing the Oncologist for management of the Methotrexate. He agreed to take me on working with my primary care Internal Medicine MD. Incidentally, he treats my Mom for her cancer, so him seeing me was a kindness. He is a Christian man and an overall stand up guy and I appreciate his willingness to help! However; my disease was advancing again and reeking havoc on my body. He told me that I was time for the Rituxan treatments and set me up with an appointment with a local Rheumatologist as a consultation for the use of Rituxan stating he had to have the input of a Board Certified Rheumatologist. That made sense to me and was fair.
My Endocrinologist was not happy with my A1C level at 12.3. Ideally, that number should be below 7. We made some adjustments in my medication regimen of oral meds and insulin. I knew until my pain levels were handled the blood sugar readings would continue to be high. I have had a difficult time getting my Endo to realize the impact the pain and inflammation have played in my diabetes, but post Rituxan my levels fell like a stone and my A1C level dropped to 9.8! I think I am making a believer out of him! In all fairness he is a great Endo and has confessed to me that he hasn’t ever had a patient with the mix of complicated diseases I have and we are breaking new territory together.
The Rheumatologist I saw did not want to re-diagnose me, thank God! I don’t know if it was the consultation order from an Oncologist that did it or that God knew I might go postal on another argumentative, arrogant Rheumatologist, but the appointment was interesting! He was reluctant to try Rituxan and recommended I at least try Arava for one month. I was not happy with his choice but felt compelled to work with him to get the Rituxan approval. The Arva was a horrible drug for me. Instead of reducing inflammation it worked to exacerbate my tenosynovitis to the point my mobility was greatly impaired and I was having frequent angina episodes. In fact, I had to have a nuclear cardiac stress test during this month. Upon return to the Rheumatologist, he did drop the Arava and gave the approval to my Oncologist to start Rituxan therapy.
The first infusion of Rituxan was over 6 hours. I was given oral Tylenol and IV piggyback bags of steroids and Benadryl prior to the infusion to help prevent any reaction. Because of the IV steroid I had to monitor my blood sugar hourly and give myself insulin as prescribed by the Endo. Rituxan is a monoclonal antibody that works against the protein CD20 found on the surface of immune system B-cells. According to medicinenet.com a B-cell is a type of white blood cell and, specifically, a type of lymphocyte. Many B-cells mature into what are called plasma cells that produce antibodies necessary to fight off infections.” This targeting of B-cells is what makes Rituxan different from any other treatment I have tried.
Rituxan treatment is not without risk and this is why it was the end of the road treatment for me. Other than Symponi and Gold injections, I have tried all the other treatments for rheumatoid disease. My Oncologist rejected Remicade as an option because I had failed all the other TNF drugs. Patients have been known to die during or following a Rituxan infusion because of an allergic or adverse reaction. A monoclonal antibody is made from mice cells. The human body sees this as an invader and will try to reject it. This is why pre-medications are given to combat this reaction and the first infusion is given slowly over 6 or more hours to inhibit a reaction. The next infusion 14 days later was given in half the time at 3 hours since I did not have a reaction. The night after the second infusion I had some minor chills and ran a low grade fever that was relieved by ibuprofen.
I slept a lot through both infusions. The IV bag of Benadryl made me very drowsy. My Mother was with me throughout the infusions and drove me home from treatment for which I am very thankful. She helped me stay on top of my blood sugar monitoring because I was so drowsy. I found that I was tired for a few days afterward, but I attribute some of the fatigue to the Benadryl as I have always been sensitive to this medication. I was feeling somewhat better when I received by second infusion but was feeling a vast improvement of symptomatology two weeks after my second infusion.
I saw my Rheumatologist last week and he was very pleased with my progress. The pain has been cleaved in half of what it was before. Fatigue remains. My liver enzymes did soar after the first infusion but my lab work last week showed they had normalized. I did get my flu shot in September from my primary care Internal Medicine MD but the Rheumatologist warned that I may not have any B-cells left to give immunity from the flu and warned that I need to take precautions against the flu this winter. As a diabetic, I cannot take steroids so I use prescription ibuprofen, Omega 3, and Vitamin E. This Rheumatologist recommended Turmeric 1000mg daily to my current regimen. My inflammation is better and the CRP and ESR are within normal limits on my lab report.
I have hope that this treatment is going to work. I was so afraid it wouldn’t and I would be stuck in the hellish nightmare of pain. I am doing better than I have in years and I am so thankful that my diabetes and cardiac issues are also falling into line with my improved health. Glory to God for answered prayers! Rituxan may be the end of the road for treatment options at this time, but it has put me on a new path to improved well being. Every doctor I have seen post infusion are ecstatic. People in my church say, “you look like you are feeling better”. I am better. Perhaps remission is just around the bend.
If you’d like to know more about Rituxan, I find drugs.com to be an excellent resource for laypersons about medications. Check out: https://www.drugs.com/rituxan.html or Rituxan.com.
Facets of Living With RA 