Speak Up to Your Doctor by Jennifer Poole
I don’t know about other Retinal Specialists, but my RS is a VERY busy man. He goes from one treatment room to another, with a packed waiting room outside, gauging disease progression and treatment outcomes for every single person to the best of his ability. It’s no wonder we can become “the next patient” and no longer a person with a life and individual needs. However I’m lucky that he’ll pause and speak with me when I have concerns.
I believe his response is also because I take time to educate myself, I don’t ask for miracles and I thoughtfully present my side of the issue.
I’ve been receiving Lucentis in both eyes for about a year and a half on a treat and extend basis, with me rushing in (at great hassle and delay) to have treatment when I have a visual indication of leakage, that is either distortion or shadowy spots. A recent article posted by Linda confirmed what I have been thinking for a while now. I spoke to my doctor about it in very frank terms.
I said “I am in my mid forties with 20 years of earning potential (and need) in front of me. I feel like I’m risking some permanent damage with every leakage occurrence, if I can be treated right away, or if leakage is occurring but I don’t notice. I am asking if this reactive treatment protocol is the best option for me. Perhaps I should be on a proactive, preventative schedule, where we are keeping the retinas dry to preserve as much vision as possible. Even if there is minor, negligible damage each time, over 20 years and beyond, they will add up to the point that I can’t work, or drive to get to work, which is the same thing.”
Here is the quote from the article: “Studies have found that after the initial monthly dosing, many doctors fall back upon PRN [as needed] treatment and fewer injections. Dr. Brown says he understands why doctors would tend to shift in this direction. “I think both the doctor and the patient get fatigued by the protocol,” he says. “Doctors are certainly aware that patients would prefer to come in less often. On the other hand, most patients don’t want to go blind. So I don’t think you can make a good argument for any paradigm that leads to undertreatment. “As with anything in medicine, you can look at it in terms of the risks and benefits of the therapy,” he adds. “The risk associated with an extra injection is the risk of endophthalmitis, which is about 1 in every 3,000 injections. The risk of a recurrence of the disease is 80 or 90 percent. So it seems to me that the pendulum should always swing in favor of a fixed dosing schedule determined by treat-and-extend.” We briefly discussed it, and he changed my schedule to an exam and injection every 4-6 weeks.
I truly HATE those injection days and having more of them is not my ideal, but neither is slowly losing my vision. Sometimes you just have to do the thing you hate, for the greater good.