All posts tagged: Orencia

EORA or YORA another RA category

Imagine my surprise when I learned about the initials YORA and EORA. YORA is an acronym for Younger Onset Rheumatoid Arthritis as is EORA for Elderly Onset Rheumatoid Arthritis. I came to a new understanding of where I am in the scheme of things. Rheumatoid Arthritis (RA) can strike at any age from babies to the elderly. The elderly’s association with RA can be of long standing disease or it can be a new development. People who develop RA after age 60 are considered EORA. That is me. There are some notable differences with elderly onset RA. Initial symptoms may include large joints. With younger RA  onset small joints of the hands and the feet are usually first signs of joint involvement.  The shoulder joint may be a presenting joint in older onset.  My shoulder was involved initially as was the joints in my hands, wrists, feet, elbows. Initially I was in severe pain. Older adults may have more generalized symptoms. My grip was weak. I lost weight. I couldn’t sleep because of the severity …

Four years of RA

  I was diagnosed with RA four years ago, this month. The first few years were whirlwinds as I was also diagnosed with two cancers that each involved surgery and radiation treatments.  My RA moved to the back seat then to the front and again back and forth. Now it is center stage.   In 2015, I was started on infusions of Orencia. Once I realized that the biologics only help your RA by about 50%, I settled in and appreciated that they helped that much. In July the next year, I developed a horrific flu. I haven’t had a flu for years. It was exhausting. Plus, the Orencia was not working any more. I started having bad flares. My rheumatologist stopped the Orencia. After a few weeks, I was started on infusions of Remicade, a TNF inhibitor. By the third loading dose, I was having a severe flare plus I was having a bad reaction to the Remicade. I was ill. It took two months for the Remicade to clear my system and for …

Remicade

My treatment for rheumatoid arthritis, RA, is moving in the opposite direction of normal. Because I was diagnosed with two cancers and rheumatoid arthritis in the same year, the wonder drug biologics were off limits for me. They presented a higher cancer risk. Eventually as my RA worsened, quality of life became a factor. Methotrexate(MTX) injections help, but not enough. I had tried the triple treatment of MTX, Plaquenil and sulfasalazine without success. Leflunomide was next, but it didn’t work either. The small molecule DMARDs were exhausted as treatments.  The biologics were next. Rituxan was considered the safest both by my rheumatologist and by my oncologist. I was infused with Rituxan. It didn’t work. Next safest was Orencia. I was infused with Orencia. It helped. It helped about 50% which was the norm for it. I received monthly infusions. But my flares became much worse at 10-11 months. Orencia was stopped. Next is Remicade. Remicade, infliximab, was approved for RA in 1999. It is a TNF inhibitor. My rheumatologist had a serious discussion with me …

Time for a visit to Ruth: Orencia is done

    Have you ever felt so depleted, that there is almost nothing left?  Are you surrounded by people who are caring but don’t seem to care? Are you so ready to call it quits? But can’t because the house needs to be cleaned first. Damn. Days can be tough. I have rheumatoid arthritis. My Orencia no longer works. And after I had a very bad flu sandwiched by two very bad flares, it was cancelled.  It is advertised as being a wonder drug, but in reality the very best it can do is help 50% of patients, 50% of the time. From a business standpoint a drug that costs $3500 a month should do more than 50% for 50%. That is what it did for me. 50% and I was a lucky one. Before that, I suffered with severe symptoms most of the time. 50% is a big help when that is the case. So now I am back to the beginning with 0 %. Square one, I am back. So today I am …

What does ACR20 mean

    Have you ever thought about what the numbers mean when they say 50% ACR20 at 6 months? This simply says 50% of the group had a 20% response at 6 months. It means half improved by 20%.   The ACR improvement criteria includes ACR20, ACR50 and ACR70. Meaning, 20%, 50% and 70% improvement. Easily enough to understand. I was reviewing a research paper on Orencia. I will be having my 8th infusion on Thursday. I was wondering if it was being effective enough and if I should keep taking it. The article had a chart for clinical responses in controlled trials. I reviewed the column that said inadequate response to methotrexate (The reason for being on Orencia; I think my methotrexate response is 50%, but it is not enough for me.) A response of ACR20 3  months 62% 6  months 68% 12 months 73%   This means that at 3 months 62% of the patients had a 20% improvement This means that at 6 months 68% of the patients had a 20% improvement. …