Some good news in my quest to start Gilenya – which is really starting to feel like a quest for the holy grail. I’ve written previously about my hopes for Gilenya and of my frustrations with the slow process. On the day I ceased Rebif I also saw a gastroenterologist for my elevated liver enzymes. The tally so far is $800 for the consult, $600 for the results, and forthcoming bills for some blood tests and an abdomenal ultrasound. Results are that I am clear of all liver diseases – he seemed disappointed. With the liver investigation closed, I am set to begin the Gilenya approval tests required by my neurologist, by my insurance provider, and by Novartis.
In hindsight, I should have ignored my neurologist’s suggestion and just waited to see the GI. After almost a month of being off Rebif, new blood tests reveal that my liver function is almost back to normal. Previous tests actually showed my enzymes at about 6 to 7 times the high limit for normal, which was worse than I had known at the time. Now I am only a few points out of bounds. Time should take care of the rest.
A lot of relief came with this news. Also, I can’t stress enough the lack of stress that comes with knowing that I don’t have to take a shot every other day. So, now that my liver is suitable for sustaining human life again I’m hoping that I also won’t have to switch to the daily Copaxone injection. For information about available therapies, take a look at our Guide to MS page.
Unfortunately, all that I’ve heard from Gilenya is that they would have someone return my call about a week ago. Which hasn’t happened. However, apparently they have been calling my doctor. So, while they won’t speak to me (the patient), I have heard through the grapevine that they are in the process of negotiating with my insurance company. Perhaps this is why my insurance company has started sending me packets notifying me that they have assigned an advocate for my “complex health issues.” While I appreciate the advocate, it does sting a bit that the insurance company has to hire nurses to fight them for my healthcare.
My optometrist completed all necessary vision tests last week. My neurologist has ordered some additional blood tests and an EKG. Then I will plan to spend 2 days in his office to be monitored for my first 2 doses in April, assuming that insurance approval has completed. The process must be difficult for everyone involved — my neurologist’s office staff look as though their blood pressure skyrockets every time “Fingolimod” is uttered. However, finally, everything looks to be in order. Unless, of course, you consider that no one at Novartis seems willing to speak to me (actually, I was sent a mailer today with their phone number if that counts).
Their general silence has begun to shatter my confidence in the drug. Are they just overwhelmed and have no time for new orders? Have they just hired employees who are still getting used to the process (of using a phone?)? Or, more importantly, are they intentionally slowing Gilenya’s introduction to the market for fear of discovering new side effects or higher occurrences of known side effects?
Let’s hope they’re just overrun with orders. Optimism remains for now…
Have you ever had problems qualifying for medication?