No doubt most of you have heard the news of the study published in JAMA that indicates that interferons (Betaseron, Rebif and Avonex) do not delay progression to disability for people with multiple sclerosis (MS).
For those of you who haven't read the study, here is the link to the original paper in JAMA (full-text version): Association Between Use of Interferon Beta and Progression of Disability in Patients with Relapsing-Remitting Multiple Sclerosis.
If you would like to see how mainstream media reports the study results, check out the coverage by The New York Times, TIME and CBS News. Also worth a look is the summary by the National Multiple Sclerosis Society: Study Suggests That Interferons Did Not Reduce MS Progression.
Rather than rehash the results here, I'll let you read them for yourself from your chosen source. I see some weaknesses in the study and places where the results are may not be so black and white, but I'll reserve those for a different time.
What I am most interested is how those of you on interferons are coping with this news. I found the news upsetting, to say the least, but I take Copaxone and don't have to grapple with any interferon-related decision personally. My first thoughts were of the emotions of all of the people who have been injecting themselves for years with these drugs. Did you feel scared? Angry? Disappointed? Skeptical about the study results and confident that the meds are helping you?
Then I wondered what everyone currently taking interferons would actually do. I imagine that most people will continue taking them for the time being, but plan a visit with their neurologists to discuss options. However, there are undoubtedly some people who will never pick up a syringe containing these drugs again, despite urgings in the press to continue taking interferon-based therapies and emphasizing the fact that the study did show that the drugs were shown to prevent relapses.
We all know preventing relapses is a good thing. Relapses are terrible. But is preventing them enough motivation for the people who experience interferon side effects of flu-like symptoms? What about the people who hate injecting themselves so much that the only thing that keeps them doing it is the vision of themselves in a wheelchair?
That is why I really want to hear from all of you who are taking Avonex, Rebif or Betaseron. What are you feeling? What are you doing? How are the people around you reacting? What does your neurologist say about the study? Please share your story in the comments section.