Stopping a treatment for multiple sclerosis is basically simple. Whether or not it is the right decision is a mixed bag of facts and emotions. No one really delights in injecting herself, but to battle the MS beast, we need to take action. Avonex, Betaseron, Copaxone and Rebif, known as the ABCRs, were developed to slow the progression of MS. Novantrone, chemotherapy for MS, has a lifetime limit. All have proven to slow the progression of this neurological disease. Finding the one that works for you can take time for some people, while others know quickly. The same experience holds true for stopping one of the ABCRs or Novantrone treatments.
1. Keeping track
Write down in a log or journal all your symptoms and negative reactions to the MS treatment. Note how long your symptoms last: hours, days, weeks or months. Note if your MS symptoms are better or worse since you began your current medication.
2. Talking to your doctor
Do your homework. Research on the Internet all the ABCR and Novantrone treatments/effectiveness/side effects. If you are on Abvonex, Rebif or Betaseron, be sure you are getting regular blood work to check liver function. If you are on Novantrone, make sure the pretesting is done and follow up on heart and blood function. Copaxone is the only ABCR that does not require blood work.Talk to your neurologist or the physician who is overseeing your medical care. Tell him you want to go off the current medication for your MS and tell your physician why. Take your journal with you for easy reference.
3. Another MRI?
Consider an MRI. Your physician might want to do another MRI if you have had one before. She will compare the films to see if there are any active lesions in your brain. This is how physicians determine if your MS is advancing or not. Ask for explanation and to see the films during the explanation.
4. Ask your physician questions until you feel confident they are being answered. Since you already did your homework, you are a proactive patient. If you need another opinion, do so; this is your health and your body. Check with the resources available through the ABCR and Novantrone websites. (See links in Resources.) You need to make informed decisions.
5. Stop injecting and safely dispose of the medicine remaining if you decide to stop taking one of the ABCRs. Ask your doctor for the best way to do this. If you decide to go on a different ABCR, your doctor may titrate, or have you go on it gradually, until your body adjusts. Work with the physician and nurse who will train you.
6. Keep notes.
Continue your log or journal. Take this with you when you visit your doctor. This resource will prove helpful to you as time passes. You can look back and see how your MS has changed over time.