Pre-Lemtrada Day 3

October 10, 2019

Pre-Lemtrada Day 3

I had planned to start this after I decided to start Lemtrada but there wasn't a whole lot to write about. Then I planned to start this the day I started my pre-medications but I didn't get around to it so this is day 3 of my pre-medications.  I've been taking two 4 mg pills of Dexamethasone in the morning with breakfast.  The first day I didn't notice a difference but yesterday and today I had quite a bit more energy then normal.  I was joking with my mom and sister that apparently all I need is some steroids. :)  I was also in a better mood overall today.  Not as nervous as I have been about going down this road.

It's been a little frustrating the last couple of days.  We've been planning to do this all summer.  I originally made my decision to move forward in May.  So I've gotten all my vaccinations.  One round in mid-June that included Hepatitis A & B; Pneumonia (Prevnar); Tetanus booster; 1st Shingles/Shingrix  then a second round at the end of August: flu and 2nd Shingrix.  I had a couple calls with my Lemtrada One-to-One nurse going over the basics.  I was in regular contact with my neurologist's office over the summer.  My insurance (we have a HMO purchased through the federal exchange but having insurance at all is definitely better then not) originally rejected my claim but once they talked to my doctor, they approved it.  I had a stubborn bladder infection in September so I had to make sure that cleared before I got my blood work done at the end of September. I got an initial call from the specialty pharmacy in the last week of September and spoke to a pharmacist so everything was moving forward.  On Tuesday morning (7 days pre-Lemtrada), I got a call from my One-to-One nurse just checking in to see how I was doing and if I had any additional questions before I started my medication.  Everything was fine on her end but she suggested I call the specialty pharmacy just to make sure they didn't need me to authorize the shipment of my medication.  I gave them a call and they didn't have the information they needed from my doctor's office or the "Lemtrada Hub" yet. ? They seemed to have had it several weeks earlier.  So of course I called my doctor's office as soon as I got off the phone.  They went to work getting things moving and called me back at the end of the day to let me know they thought they have everything resolved.  My One-to-One nurse called me on Wednesday, to let me know they were working on it and believed they had everything resolved but to call the pharmacy to check on the shipment status so I could authorize.  I called the pharmacy and there was an issue with the amounts being in their system wrong but as soon as they fixed that; they would ship it and suggested I call back in the morning.  I called back after lunch today.  At this point, the hold up was now with the Insurance Department because they were trying to figure out my benefits and co-pay. 😣 I am supposed to be starting on Tuesday morning, bright and early and they couldn't even guarantee that they would be done by Monday.  Frustrating!  A couple hours later I got a call from a nurse at the infusion center to let me know that she had talked to the pharmacy and they did get everything pushed through and would be calling me to finalize the shipment.  Someone did call me from the pharmacy about 30 minutes later and I thought we were good to go until 20 minutes after that I got an automated call asking me to verify the shipment then it put me in contact with another service person who told me I still needed to confirm authorization to ship which I thought I had already done.  Then she told me I had a $50 copay and was going to collect it but someone else was working on my account so she couldn't go any farther and would have that person call me back. 😟 So no one called me back and now I have to call in the morning again to see if I really did authorize the meds to be shipped out.  I don't think this should be this complicated.

Right now I am just trying to get myself organized and I've got this silliness to deal with.  I am not sure exactly what to expect so I am trying to prepare myself a bit.  I am doing a bit of mama bear nesting.  I bought extra food this week so the kids and I will have snacks and food for lunch. I made two Pizza Casseroles and two Lasagnas and froze them.  I am going to be at the infusion center next week for five 8-hour days so having something easy for dinner a couple nights will be good. Plus the expectation is to feel like I have the flu for about a week after.  I just wanted to have some options.  I was also planning to buy some frozen soup. Just stuff the kids could make for dinner to help out.  It's not like we live in BFE and can't order food but if it helps out to not have to think about dinner and just throw something on the stove or in the oven then it helps out.  Usually, the only time I make Pizza Casserole is when I am bringing it to someone because they are sick or there has been a death in their family or other sort of thing.  My husband was making fun of me for that fact but whatever; the kids like it, I don't make it that often and it freezes well.  Wins all around in my opinion.

After the initial week of feeling bad, I am planning to just lay low and hang around the house coming in contact with as few people as possible. I am hoping it will give me an opportunity to catch up on some house projects.  I have to remember not to overdo it.  I can do that.  So that's where I am at, today.  Trying to get myself ready to go; trying to get the medication to show up and trying to keep my spirits high.  I am really trying to concentrate on the outcome and not be so nervous about the process.  Looking forward to a wheelchair not necessarily being in my future and not having to worry that my husband will be my caregiver when we get old. Maybe we can just get old gracefully together and go in our sleep together when we are 110 or something. 😁