One of the main points of this blog is to help people be better health care advocates for themselves. One way to get this point across is to share some of my experiences, and there have been many.
Today, I’d like to share an experience that happened about four weeks ago at a regular rheumatologist appointment.
First, it’s important to realize that everyone has different experiences with doctors. I’ve been very fortunate over the last 30 years or so. My doctors have not only listened to me, they have seen the importance of including me in the decisions being made for my medical treatment. This is extremely important since, in my case, we’re talking about medicines that can have unwanted side effects.
Once a year or so I see the actual rheumatologist (I see her nurse practitioner the rest of the time). Lately, the only way to see the doctor is to also see a Fellow working with her.
I have been dealing with severe, out-of-control rheumatoid arthritis (RA) for the last three years, as well as severe osteoporosis. I’ve tried Avara, Enbrel and Orencia for the RA. None of those meds helped. I cannot take Fosamax or Actonel for the osteoporosis because they make my ulcer (a product of another med I can no longer take) bleed. We tried Prolia infusions and they did no good. I was on calcitonin, but was taken off it after studies concluded long-term use of that med caused a high risk of melanoma.
The Fellow, doctor and I discussed the RA treatments that didn’t work and one that I absolutely refused to take because of the slight risk of an incurable brain infection. I know my body well. I am in the “less than 1 percent” category and I will not take a chance with something like a possible brain infection. I thought I had made myself very clear to the Fellow.
After my blood tests and x-ray of my hands were read, I received an email from the Fellow saying that the Orencia was not helping and I needed to change meds. In the email, she asked if I had considered the biologic I had told her I refused to try. I reminded her that I had told her to her face I would not take it and why. She said I had to come in to discuss the alternatives. I said no. I prefer knowing what my alternatives are so I can do my own research. I made it very clear I would not waste my time or hers talking alternatives until I had done my due diligence. I also told her I refused to be bullied and forced to make a quick decision.
Reluctantly, this doctor told me about Xeljans and Actemera. She cautioned that Xeljans was a daily pill and Actemera was an injection or infusion. She also said it was very possible insurance would not cover either one, where it was more likely the one she recommended would be covered. I reminded her that injections were not a problem, I’d been injecting myself while on the Orencia. I also told her I was not a candidate for infusions for several reasons.
I contacted others with RA and asked if anyone had tried either of the meds. I spoke with a very good friend of mine takes Actemera infusions. It had helped her for about four years before she built up a tolerance. She recently was put on methotrexate (MTX) to hopefully boost the Actemera. I finally made my decision to try the Actemera, but self-inject.
I’d had a bone density scan just before my rheumatologist appointment and that showed marked deterioration of my bones. I asked this doctor what we were going to do about the osteoporosis. She asked me if I’d ever considered Prolia. Hello? We discussed this with the doctor. Those infusions did not help. I told her to read her notes. I asked her what else we could try. She finally got back to me saying that based on my preferences, there was nothing more they could do and I’d have to go to a bone specialist.
My preferences? She really wasn’t listening to me. I cannot take certain classes of these meds because they make my ulcer bleed. I cannot do infusions because of the lighting in the room, the fact that it makes my bones hurt and I’m useless for three days or more and I’m a snowbird. I’m not here in the winter and can’t get treatment through insurance in Arizona. And I cannot pay out of pocket.
So, what lessons can be learned from this experience? First, be ready to speak up for yourself. Don’t let any doctor bully you. Ask questions. Tell the doctor how you really feel. If you’re uncomfortable with something the doctor is suggesting, let the doctor know. This is your body and your life. If you need time to think about treatment, tell the doctor. I’m not afraid to speak my mind and I do. Make sure you are part of any medical decisions being made about you. Do not ever let a doctor intimidate you or bully you into something for which you are uncomfortable. And insist on doing your own research to make an informed decision.
I have made an informed decision on my next course of treatment. We’ll see how it goes.