I was diagnosed 21 months ago and started Radicava about 6 weeks later, during which time included a second opinion. This second opinion neuro had my approval within two weeks. My husband was trained for at-home infusions, I had surgery for a med-port, we were given home health nursing for accessing needles and any other needs, and my insurance covered everything.
However, this past January we started having billing problems and were getting statements showing we owed $50-70,000. There was also a problem with getting approval again using Option Care. My doctor suggested a change of pharmacies to Soleo and had approval within a day. I have been with Soleo since March. Still no issues with insurance coverage. ****Just started a new insurance plan, having recently retired, as we wait for Medicare to kick in, and so far no problem for the September cycle.****
I only had very mild side effects the first two cycles with mild diarrhea. None since!
Effectiveness-I feel much better, more energetic, more willing to be active and positive. Close to the cycle coming up again, I begin to feel more exhaustion, unwillingness to participate in activities, less strength, and slower movements requiring greater efforts. Family, friends and colleagues can always tell when I am due to start again or if I am currently getting my infusions. So that tells me it makes some difference. I had a lengthy plateau of symptoms until just recently (spring) when I progressed much more in a shorter period of time. Now I feel about the same as I did at my last clinic visit 3 months ago.
I know I am losing strength and abilities. I now use rollator or wheelchair outside of the home. I can dress, shower, and eat independently for the most part. Help with these activities is always appreciated and saves me energy but not a necessity. (My greatest difficulties are bras and cutting food) I recently started using Trilogy at night. Is it slower because of Radicava? I don't know but my doctor is pleased with my "lack of progression".