I have been living with rheumatoid arthritis for over eight years now. My onset was dramatic and included a trip to the ER. I was in such severe pain, I was all but immobilized. The ER doc sent me to a rheumatologist. It was the start of the longest relationship I have ever had with a doctor.
I was started on methotrexate pills, prednisone as bridge therapy, and meloxicam. Treatment was complicated with the diagnosis of two cancers both discovered by my rheumatologist during routine tests that first year.
My first cancer was stage three thyroid cancer which required total removal of my thyroid, a complicated surgery followed by systemic radiation treatment that also damaged my salivary glands. On a follow up scan to the one that found the thyroid cancer and ten days after the thyroid cancer surgery, breast cancer was found. A month after the first cancer surgery, I had the second for breast cancer. This was also followed by a series of radiation treatments and then aromatase inhibitors. The last was tamoxifen (which later caused my third cancer).
At the time, the TNF inhibitors would have been the next step. Methotrexate only partially helped me. My doc felt that with my having two cancers, taking the TNF inhibitors would be too risky. So instead, we worked through various combinations of methotrexate with sulfasalazine, leflunomide, and hydroxychloroquine. It was not the answer.
We turned to the biologics. My doc got an exemption from the insurance company to skip the TNF inhibitors and go straight to Rituxan. It didn’t work. There was not a lot of success until I was given Orencia. I was on 25mg of methotrexate plus the Orencia. I did fine for about a year. I developed a flu and the Orencia stopped working.
After several years, my feet started to feel numb. It wasn’t total numbness. It was patchy. It was enough to make driving my standard transmission mini cooper risky. I just wasn’t sure where my feet were touching the pedals. When the full realization of what was happening hit me, I stopped driving.
Next was a hip replacement. It was a terrible experience but worth it. Next on the plan was Actemra. I had a TB test and the shingles vaccine. My doc also wanted a follow-up to a lumbar scan that showed something in my uterus. A biopsy was scheduled with a gyn doc. She reassured me that it probably was nothing. The biopsy came back as a rare serous uterine cancer which was aggressive and deadly and caused by my breast cancer drug, Tamoxifen.
Fortunately for me the cancer was in the early stages, I was systematically gutted with robotic surgery, poisoned with a summer of chemo leaving me bald and then humiliated with a round of vaginal radiation. I have a hard time believing that any of my cancers would return as the treatments were so brutal.
Every time we were about to start Actemra something came up. Next was a severe soft tissue necrosis of the radiated tissue of my breast. It took ten months of wound care plus a surgery before I recovered. The culprit was methotrexate. I had been on it for seven years. I was giving myself injections for the last few years. Its thirteenth black box warning was soft tissue necrosis. I no longer have methotrexate as a tool. My flares increased in severity. I am typing with one finger as my hands are almost non-functional.
My RA doc hates steroids more now than ever. With no other solution, I increased the amount of Medrol I was taking as my feet and hands were swelling more and more. Wounds popped open around my lower legs and started draining clear fluid. When my doc saw my legs she put me on Lasix, TED hose, ordered an MRI and cancelled my Medrol.
Turns out Actemra is not recommended for some disorders (diverticulitis, histoplasmosis) that are in my history. The JAC inhibitors can cause cancer. The only drug left was Orencia.
I have been on Orencia for three months. Orencia seems to be the safest of the biologics. It was the only thing left to try and there was no methotrexate to go with it. It is helping. I hope it lasts longer this time. My doc’s toolbox of remedies is nearly empty. My RA doc and I have had the discussion. She brought up Imuran. It is used for transplant patients and for those with RA.
Palliative support is what I have left. This is me eight years in.
My case seems like an odd one. In some ways it may be. Each of us has a unique story. The current selection of RA drugs is a big move forward. The biologics are miracle dugs for many. Then there is the third to a half of us who have RA who have mixed to no success with RA drugs. We are a big problem to the medical community.
Research is ongoing. In the meantime, we need to be assertive with our doctors. We need to understand our treatment plan and expect change when it is not working. We also need to set up our own toolbox that includes a positive mindset and an understanding of RA and of the treatment choices. We have a chronic, progressive disease. It is not going to disappear. Only about 10% of us go into remission. We need to learn to live with it. Hopefully, you have better luck than I have had. With all my pain and health problems, I am grateful to be alive and every day brings joy to my life.