Well, this is exciting. I don’t have to wait months for the shingles booster shot before I start the new drug. I’m going to start the new drug in the next few weeks. Here’s what’s going to happen:
- I will get the Drug Delivery date.
- One week before that date I stop taking the Gilenya. I will have a week of no drugs. I’ll still be good: Gilenya has a half life of 14 days.
- When the new drug arrives I put the special intro doses in the fridge. All other doses don’t go in the fridge; I don’t know why. I don’t ask why.
- Over the next few days I gradually increase the chilled dose and then on the sixth day I take a room temperature dose.
- My hair grows back long and lush and the nausea side-effects causes me to lose weight.
That’s my plan.
I’m sad to say goodbye to the Gilenya, especially since it’s done well by me for so long. The really sad thing? I just had $6,300 worth of Gilenya delivered. I’m leaving it unopened, just so I can go back to it in case the new drug “disagrees” with me. Can’t forget the Copaxone Reaction.
I’m all encouraged about this new drug and the possible new disease path, because I just read a very encouraging article about secondary progressive MS.
It said this about the transition from relapsing-remitting to secondary progressive:
“If someone has mild disease you may not even notice the transition that much,” says Perumal “and, in fact, people with milder MS can be stable for years without relapses or significant worsening of symptoms.”
Here I am with an absurdly mild case of MS … at least if you go by symptoms and not by MRIs. So, here is the final step of my plan (after my hair thickens up):
6. Continue to be oblivious to what goes on in my cranium.
4 responses to “Another Step Further In The Drug Transition”
Yes. It’s obnoxious to end up with “leftover” medications, but so much better to have it on hand so you can revert rapidly if something in the swap goes awry (which I hope it doesn’t!). 🙂
Hope all goes smoothly! (and I also have no idea what the deal is on the fridge vs. room temp thing – if you ever find out, I would be curious!)
KC – all I can think is that each pill is the same size but has different amounts of the active ingredient, so the filler must require refrigeration to be stable?
A filler that isn’t shelf-stable *would* be an interesting curve ball! It might be that the medication needs itself to be stable, though – that in quantities over this amount, it is fairly stable, but when diluted past that, it becomes less stable? (like how rapidly aluminum foil dissolves vs. the same amount of aluminum shaped like a pellet, although that’s mostly just vulnerability based on surface area. I don’t know.)
KC – it is a mystery. You would think the internet would have the answer. But no.