Today, I had my neuro appointment to talk about my MRI. I wanted to be able to see the lesions and talk to him without seeming rushed. I like him a lot, but he's kind of intense, and the phone doesn't help that.
We went through why the CRABs wouldn't work, and I understand that basically if Rebif isn't working, the others likely won't either. I also asked him why he was not suggesting Novantrone, stressing that I wasn't interested, but wanted to be able to answer that question. He was like, "No, no, no! That's toxic! It's chemotherapy!" I understand; I wasn't interested. I just wanted to know why he wasn't interested.
A weird thing is having to consider how long I have to be off a medicine before I have a baby. Brad and I aren't in any position to have a baby now, but I wanted to know the "wash out" period. He suggested three months.
As for a second opinion, I have come to decide it's unnecessary. So, what if doctor #2 disagrees with my current neuro? Then I am stuck with 2 combatting opinions, and why would the new doctor's opinion be so much more valid? Plus, there's the time getting into a new doctor--as a new patient that takes time. It just seems like a hassle and unnecessary.
So, I am going to talk to my husband about Tysabri. The whole risk of PML doesn't scare me, really. I mean, with birth control, there is the risk of blood clots, but I still take them and have for about three years. And while my doctor acknowledges the risks associated with Tysabri, he seems to think they are rare enough; he feels comfortable prescribing the drug.
If I do decide to switch, the next step will be to make an appointment to fill out the paper work and go over the risks. Then, I have to figure out how to afford it, seeing as my insurance requires me to pay the whole cost up front and be reimbursed 80% (I have met my deductible already for the year.) Biogen said that once my application is received, we can talk about options to pay for it, so hopefully there are some resources. Then, of course, there are the hospital costs associated with the infusion. Ugh! I hate this part of the process.
So, that's where I am sitting right now. Just wanted to update you.
We went through why the CRABs wouldn't work, and I understand that basically if Rebif isn't working, the others likely won't either. I also asked him why he was not suggesting Novantrone, stressing that I wasn't interested, but wanted to be able to answer that question. He was like, "No, no, no! That's toxic! It's chemotherapy!" I understand; I wasn't interested. I just wanted to know why he wasn't interested.
A weird thing is having to consider how long I have to be off a medicine before I have a baby. Brad and I aren't in any position to have a baby now, but I wanted to know the "wash out" period. He suggested three months.
As for a second opinion, I have come to decide it's unnecessary. So, what if doctor #2 disagrees with my current neuro? Then I am stuck with 2 combatting opinions, and why would the new doctor's opinion be so much more valid? Plus, there's the time getting into a new doctor--as a new patient that takes time. It just seems like a hassle and unnecessary.
So, I am going to talk to my husband about Tysabri. The whole risk of PML doesn't scare me, really. I mean, with birth control, there is the risk of blood clots, but I still take them and have for about three years. And while my doctor acknowledges the risks associated with Tysabri, he seems to think they are rare enough; he feels comfortable prescribing the drug.
If I do decide to switch, the next step will be to make an appointment to fill out the paper work and go over the risks. Then, I have to figure out how to afford it, seeing as my insurance requires me to pay the whole cost up front and be reimbursed 80% (I have met my deductible already for the year.) Biogen said that once my application is received, we can talk about options to pay for it, so hopefully there are some resources. Then, of course, there are the hospital costs associated with the infusion. Ugh! I hate this part of the process.
So, that's where I am sitting right now. Just wanted to update you.
posted by Heather @ 3:58 PM
4 Comments:
At 4:35 PM,
CC said…
Wow, This is a big decision. As poorly as Avonex makes me feel, I have hoped for the Tysabri option. In my mind it has been a no brainer, but I think my family is more worried about the PML. Hearing you go through this makes me wonder what I will do if and when I am given the choice.
At 6:52 PM,
mdmhvonpa said…
Put the 2 doctors in a room, queue the Vulcan Battle Theme and let them go at it.
At 7:19 AM,
Mel said…
Sorry you are having so much trouble getting the proper care or even knowing what the right thing to do would be.
At 6:13 PM,
Lauren said…
Hi Heather...I wish you much, much, much success on Tysabri therapy :)
As to your statement: "Then, I have to figure out how to afford it, seeing as my insurance requires me to pay the whole cost up front and be reimbursed 80% (I have met my deductible already for the year.) Biogen said that once my application is received, we can talk about options to pay for it, so hopefully there are some resources"...please note the following:
Once you are in the TOUCH process/program, your TOUCH Case Manager will be able to give you indepth info re: the Tysabri "Patient Access" Program, and you can also obtain assistance from N.O.R.D.s for up to $5400 per year in co-pays for either Tysabri or the infusion. See: http://www.rarediseases.org/, and add'l resources on there website too: http://www.rarediseases.org/search/orgsearch?org_name=MULTIPLE+SCLEROSIS&SUBMIT=Submit+Query
Additionally, check your ins. benefits as most cover Major Medical, which should include out-patient procedures (i.e., (infusions).
Again Heather, all my best to you!
Lauren :)
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