My journey through the biologic DMARDs began with infusions of Rituxan. I had no relief from my RA with Rituxan. Next in line were infusions of Orencia. Orencia gave me about 20% relief. At the time it was better than nothing. Orencia worked for over nine months and then stopped working. At the time I had a worse than normal flare and developed a horrible flu. Up to that point I hadn’t had a cold or a sinus infection for 3 years.
After about six weeks I was started on infusions of Remicade. Remicade has three loading doses scheduled 2 weeks apart. I completed the loading doses and then became terribly ill. I felt like I was in ‘a failure to thrive’ situation. Absolutely no energy, listless is a good word. I moved into a bad flare which overshadowed the side effects of the Remicade. I was in a bad way for over a month.
Remicade is a TNF inhibitor (TNFi). The recommended suggestion is that if a TNFi is stopped because it doesn’t work, another TNFi might be tried. If a TNFi is stopped because of side effects, a non-TNFi should be tried next.
After my bad experiences, I was ready avoid the biologics. Medrol does save me through tough times. However, my RA is getting worse. I have a hard time walking. I have never been in remission (4 years). Wherever I have a synovial membrane in my body, it is inflamed. My tendons have joined my joints. I have a creaky body.
Fortunately, I love to read and I love to write. I can do both with RA. I have a garden. Some days working outside is very hard to do. I do it. It keeps me moving. I love my garden. I love to knit. I love to cook dinner for my son. Life is good in spite of RA. But it is starting to be less manageable. I have a cane. My son carries heavy things for me. Sometimes it is very hard to go shopping. So I took another look at my Doc’s last suggestion, Actemra.
I pulled out the Actemra brochure my Doc had given me. I had thought that the mode of action might work for me. Then on the cover of my brochure, I saw the following words,
“Important Side Effect Information. ACTEMRA changes the way your immune system works. This can make you more likely to get infections or make any current infection worse. Some people taking ACTEMRA have died from these infections.”
This got my attention. I remembered clearly my problems with my last two biologics. I did not want to have an infection or worse. Maybe I’m not a match for Actemra.
I had histoplasmosis when my family lived in Nebraska. It is a fungal infection and affected my lungs. I had a garden there also. I also possibly had a case of diverticulitis (according to an ER doc). ” Some people taking ACTEMRA may develop a hole in the wall of their stomach or intestines.” I don’t want to die from this.
Of course, I have to evaluate the part of the medication insert that I understand.
With 4mg/Kg: 9% had a 70% improvement 24% had a 50% improvement 43% had a 20% improvement
With 8mg/Kg: 19% had a 70% improvement 37% had a 50% improvement 59% had a 20% improvement
So is the likelihood of a 20% improvement worth the risk of death. I don’t think so. Too bad. But the risks are too high for the limited reward. My RA is bad. I am one of the unlucky ones. I still feel life is good. So I will pass on Actemra.