Reading the fine print on a medication insert is not done by many of those with RA. I suspect the big reason is the amount of time it would take to understand all the information or even to understand the information of value to you. It does seem like too much work. But there is a time to buckle down and read the inserts. I am at that time.
I need to make new decisions with my Rheumatoid Arthritis(RA) treatment. I have tried three of the biologics. One didn’t work. One worked about 50% for nine months and then left me to a bad flu and a worse flare. The third just made me sick. I felt like my life was being sucked out of me. It was not a good feeling to have.
For the last six months, I have sustained myself with methotrexate injections coupled with hydroxychloroquine, meloxicam and methylprednisolone. I love methylprednisolone (Medrol). It makes me feel better. I morph from a cripple in excruciating pain into someone feeling almost well.
My RA is getting worse. Not unexpected. Most of my joints are already involved. My feet feel like there are steel wraps around them. Sometimes it is hard to walk. I have a cane to use when getting around is difficult. My shoulder involvement makes it hard to dress. All my pelvic joints complain. My knuckles ache most of the time. And so, it goes.
Now is time to take another look at the biologics. Since each of them work a little differently, if one doesn’t work for you another might. Three did not work for me. Still I look again. These are the concerns that I am bringing to the next visit with my rheumatologist.
- Infection is a major complication of using most biologics. This is especially important to older people. In the medication insert Humira mentions the need of giving special consideration to the elderly. It is not uncommon for an old person to die of pneumonia. I am an old person (statistically). I do not want to up my risk of dying from pneumonia.
- Only 19% of those who try biologics have a 70% relief at 6 months. They are fortunate.
- 50% show a 20% improvement at 6 months. This is what they mean in the literature about their drug being helpful for RA. 20% improvement is a hard state to live in. Is this degree of helpfulness, worth the risk and the cost? Sometimes it is. Sometimes it is not.
- And then up to 50% have no relief from the biologics at all. At this point those whom biologics will help is anyone’s guess. Most doctors try one after another until they find one that works for a while. Not efficient. Eventually, when more is known about RA there will be better predictors.
- Cancer risks are not a big concern for me. It looks like cancer is more an issue for children who have the juvenile form of RA. My lack of concern is the fact that I have already had two cancers and I see that my risk is there but lower than it might be for some. I see my RA as my biggest problem.
I am in my fifth year with RA. I am active. I have learned to adapt. I still need more relief. I will listen to what my rheumatologist says. I respect her and she will listen to me. I am fortunate to have her. My decision will probably be to pass on the biologics. I am not sure what else is out there for me. My experiences with the biologics proved to be worse than the disease. Medrol is good for me. My bones are strong. The low level of Medrol that I need to keep symptoms at bay does not put me at elevated risk for complications. This is the decision I am coming to at this point in my history. Works for me but not the choice for many others.
The biologics do work for some. They are well worth taking for those who find relief with them.At the same time, it is good to understand that they may not be a panacea. Don’t be too frustrated when they don’t work as well as expected.
My statistics come from the medicine inserts on several of the biologics. This is my article location: ACR 20 50 70 It explains how improvement in RA is expressed in numbers.