Wednesday, November 4, 2009

Trying to Plan Ahead is Exhausting

I am frustrated!! Those of you who read my blog and keep up with the personal ups and downs I experience may recall that I'm to try Rituxan to treat my RA. The neurologist gave the thumbs-up some weeks ago so my rheumatologist said it was "a go!" The only consideration I needed to make in regards to my MS was to be off of Copaxone for 2 weeks before hand.

When I received that news I stopped injecting daily so I've been MS-drug free for almost 3 weeks now as of Friday. Then there were several questions which needed to be answered before the infusions could be scheduled.

Does my insurance company require pre-authorization for Rituxan infusions? No
Does my insurance prefer one hospital over another? No.
Inform rheumatologist of insurance requirements. Done.
Inform rheumatologist which hospital I have chosen to have infusions. Done.
Have rheumatologist fax orders to hospital. Done. (more on this below)

Is there financial assistance available? Yes.
How do I apply for said assistance? I called and received packet in mail.
Is my rheumatologist already in said program? No.
Is my hospital signed-up in said program yet? No.

How much will $4000 copay assistance cover? Must know price of drug first.
Call insurance company to determine negotiated rate of drug. They need code #.
Call financial assistance program to get code #.
Call insurance company again with code # to get price.
Fingers crossed that the correct info was given and $4000 will cover my 10% responsibility for the drug portion alone for one year.
I will still have to pay infusion-related costs without assistance.

Allow time for my rheumatologist to complete paperwork (still within 2 week Copax-free zone so all is okay).
Call hospital to schedule Rituxan infusions. They haven't received orders?
What?! Told to call my doctor and then call infusion center again.

Complete medical information release form which was in packet I received for copay assistance program.
Take form to rheumatologist office to have them fax it to program.
Have them call to enroll their office, too.
Call to activate copay 'credit' card. Notice that immediately available credit is $2000. If more help is needed, it may require submission of financial need forms.
Worry about this later.

Inform rheumatologist that hospital says they don't have orders.
My doctor faxes orders again and calls me personally later in day.
(Note she has called me personally at least 3 times during this entire process.)
Call hospital to schedule infusions, hoping to get this started tomorrow or Friday.
No can do. All booked. Must wait until next week.

But infusion next Thursday means follow-up infusion on Thanksgiving when the infusion center is closed. Oh, and Rob and I were thinking of escaping out of town that week. And next Saturday is our fall "piano kids-only class day" here in my studio, an event which is always exhausting because it involves groups of kids and parents who are hosted in the upstairs area of the house which requires cleaning the house first.

This isn't a good schedule. I had planned to get it done this week and the week BEFORE Thanksgiving to enjoy having it out of the way. So I talk to Rob who validates my anger and frustration and helps me to come to terms with putting this off yet another week.

So now I'm scheduled to have Rituxan infusions on Nov 19 and Dec 3. We will be free to go away the week of Thanksgiving as Rob's taken the week off. I don't need to worry about being worn down while trying to clean the house (note to self: please consider hiring someone to help this time around).

But I'm still frustrated that they didn't have my orders (easily on hand) last week when I called and that now I will be 5-weeks off MS meds, with the worry that I'm living unprotected. Yes, I know. The fear is self-imposed and who knows if those nasty immune cells are having fun eating away at my myelin instead of the Copaxone particles.

Note to self: It'll all be okay. Breathe!!


  1. LOL, sounds like my daily planner! Hey, I went off Copaxone a few times and my super-famous (uh-huh) neuro told me "not a problem" -- something they have no data on, huh? LOL Or as one neuro said after I'd been on Copaxone for many years, when I asked about going off: "Well, your immune system has already been modulated." (HUH????) I think you are right to try the RA drug and maybe the Copax break will do you good! I mean, who knows? Enjoy your breaks, glad to see them in that schedule!

  2. LOL. Thanks Diane. I haven't really noticed any difference in MS symptoms without the shots. Perhaps everything would work out great. Of course, I do believe that it will.

    Hey, about that famous (cough, cough) former MS doctor of yours. Is there any chance that this is him, recently hired by Novartis. (press release)

    A Dr. Craig Smith perhaps?

  3. Holy Moly!!! What a pain in the butt! Halfway through I was starting to get a headache, I can only imagine how you feel. Woooh.

    Side note: I'm supposed to be getting my Copaxone tomorrow. I told the hubs that I wanted to start asap (after seeing the nurse of course) and he asked if it could wait until the week of the 17th when he'll be off and able to learn with me. Um...NO! LOL!

    I'm already making myself crazy about what going on in there. Does the Copaxone stay active for a while? Probably not since you have to inject everyday.

  4. Lisa, if it makes you feel any better, I've been off my Copaxone for near a year now.. shhh.. :) Started as a money & insurance coverage issue, then found I was actually feeling a bit better without it.

    I've not had any further problems, and haven't gotten any worse symptom wise *fingers crossed*

    I don't think its going to totally mess you up to be off it for a few months even. Especially if they are the ones that suggested.

  5. Lisa, my mom has Lupus. She's on an infusion but will start Rituxan soon.

    I understand the self-imposed fear of being without your Copaxone. I had the same fear in May when I had to "ration" my injections because I didn't have enough until Shared Solutions came up with a way to give them to me free.

    It was impossible to pay the copay under Plan D! 33%?

  6. Lisa, O M G. UGH OMG tu Brutus, he keeps...amazing me. Oh, Lisa....I...I can't. He would sue me if I spoke the truth about...things I know. AAARRRTGGGHH

  7. OK< I don't know if I read THE press release but I read A release, "president of the Seattle MS HUB" ???? Wow! That's a first. I guess denials only happen when convienent. But to BRAG about THAT? That ratty excuse for a doctor's office? I'm speechless. I guess he is every man, and a real devotee to those with MS. N O T!!!

  8. {oops, I gave the wrong link in my haste.}

    Haha, Diane. I just saw your comment come through in my email, then I came to tell something else. But then I noticed that I forgot to put a link into my comment. Look here -
    It says that he came from Genetech where he was the medical lead in clinical neuroscience and development programs, including MS. Also former president of the Seattle MS Hub and director of the Swedish Hospital MS Center in Seattle.

    This morning I got a phone call from the hospital infusion center. The woman tells me that I am scheduled for Nov 12.

    I say, "no, I'm not. I'm scheduled for Nov 19."
    She says, "nobody called us!!"
    I say, "YES they did. I called you!!"

    This was the same woman who initially dismissed me because she said that my rheumatologist had not faxed the orders over. She is also the same person I spoke with when I called to change my schedule.

    Now, ask me. Do you think that I believe she never had those orders in the first place? Too quick with the "I never received....."

  9. Ok, yeah I read same release, yeah, I got a person who shall remain un-named to tell me he went to Genetech, see, his daughter was starting college nearby, but he kept his house (and wife) here, Genetech releases at the time pronounced him as researching eye problems, which he loves doing. I still hope he is a decent man, but I hate lies and half-truths to cover what is uncomfortable to those who hold power over you.
    Oh, YES, she sooo just dismissed you initially. I hate that crap too. ADMIT to your error, apologize, and stop blaming the patient! (I get this all the time. With age and wearing down, I let it pass.)