New Rx: making the move to infusion meds.

It has been quite some time since I’ve posted anything, but things have been relatively stable…

I experienced my second instance with optic neuritis. Yet again, my right eye took the hit, but this experience was different than the last one. The best way to describe it  was how the upper right quadrant of my vision had a thumb smudge in my visual equity.

Casey and I were finalizing our NZ trip plans (2/13/2021-4/1/2021), and about 4 days before we were scheduled to leave I was scrambling to get things figured out. Luckily I was able to get an appointment with an amazing ophthalmologist. It took about 3 months, but my temporary vision & color blindness scare is gone and things are back to normal. 

Ohh yes, and I’ve finally been able to find a new neurologist! The new doc has a focus is on multiple sclerosis 🤩 

I wanted to share an update/change  on my multiple sclerosis medication from the oral Rx to the TYSABRI infusion. My infusions are every 6-weeks, and last two hours. The first hour is for the actual infusion, and then an hour for observation.  I’m able to schedule future infusion appointments, which helps with any travel planning and what not. My first appointment was the morning of Friday 7/9/2021.  I find the my infusion appointments relaxing, and I feel great after too.  I like to think of the 2-hour appointments to treat myself, where I can used the time to  bring something to read, listen to music, nap or do nothing.

To my surprise,  I received a gift in the mail from Biogen, the maker of TYSABRI. The box contained some reading material, a book (Faces of A Fighter) from fellow TYSABRI infusion fighters and some useful cool accessories to take to the infusion center:  a sleek 17oz water bottle, orange fuzzy blanket and a heating/cooling pad. All of the 3 accessories have an encouraging saying on them. 

An interesting read...great perspective!

I stumbled across this article last month and wanted to share it with you:

Invisible MS Symptoms Are Real, Whether or Not Other People Believe Us

Exacerbation lingering.

Just a quick update: Unfortunately, the symptoms of my exacerbation are still occurring, but they've gotten better..... slowly.  By better I mean the numbing and tingling sensation on my feet is pretty much gone, and I have more sensation back on my face and tongue but I'm still waiting for the numb sensation to be gone completely.  Slowly but surely, just have to continue being patient  :)

This may sound a little bizarre for me to say I was glad there was an active lesion seen in the MRI, but because of that finding, I gave good reason for my sensations and how they may be temporary. Had there not been an active lesion and I was still having the symptoms would have been a bit more disheartening because I may have been stuck with these symptoms for the rest of my life, who knows.

Medication update: Tecfidera is working well - Sunday will be on mark my third month/refill.  Turns out I do not need to eat before I take my AM & PM capsule.  I am also not making the monthly visits to Kaiser's Pharmacy to get the MS medication as Tecfidera is delivered via FedEx. Sure, I have to schedule the deliveries, due to the temperature sensitive RX, but the cannot complain too much about the awesome trade-off!  Now that I have made the transition from needles to an oral medication, my wish now is for a medication that is not temperature sensitive.  Then I could say how things would be as close to perfect as it could get for me, multiple sclerosis wise  ;)

The next thing on my medical to do list is changing my neurologist. I've had the same one since we signed up with Kaiser and I think it is time to make the change.  I feel I need someone who is a little more aggressive and dependable.

Tecfidera update

Things have been pretty busy and I've been unable to post some information I had been wanting to share, but better late than never. This post will be filled information from different days, so I will try and make it easy to follow.

As of 6/12/16:
3,330 days = 9yrs and 12 days. Final day of my daily 20-mg glatiramer acetate injection this morning!! Bittersweet goodbye to Copaxone & Glatopa, you served my medical needs so well. Crossing fingers my body tolerates the switch to Tecfidera, an oral multiple sclerosis medication.

6/14/2016 AM:
The initial 7-day 120-mg capsules arrive as promised. As you may notice, I had a small lack of protection with a disease modifying medication (I had been worried about having this all along).

I have to say the first week of Tecfidera was interesting. One of Tecfidera's common side affects is how it may cause flushing. Surprisingly, I did end up experiencing flushing, four hours after taking the initial AM dose of the medication. It was amazing how quickly the flushing hit me, as though I had been embarrassed which tends to cause my face to feel warm and my cheeks turn a little red. I was not sure how long I would feel this sensation, but it ended up lasting for an hour. I was told the flushing could occur for the first month or so while the body was getting use to the medication, but the experience differs for everyone. In the thoughts to minimize the flushing, we decided to purchase some 80-mg baby aspirin to take 30-min before (specialty pharmacy pharmacist advised on this option), but discontinued taking the aspirin after a couple days. Luckily, I experienced flushing just that one time, even when I started the higher 240-mg regular dose capsules the evening of 6/21/16.

7/5/16:
Past 7-10 days I had felt a tingling sensation - first felt on the right side of my lip and progressed to the right side of my tongue (feeling felt is similar to what one may feel after having dental work done and when that numbing medication is wearing off). The soles of my feet eventually felt the tingling as well. Other than the new addition of Tecfidera, everything else is the same. I had called Kaiser's Specialty Pharmacy in Daly City about my symptoms. They explained how they didn't have any reports and advised me to contact my neurologist. Unfortunately, my neurologist was on vacation for a week, which began 7/5.

7/6 PM:
Feet are not cold, but with the tingling/numb sensation they feel cold.

7/8:
More numb feeling. PM - while brushing teeth, mouth felt more numb.

7/29:
Brain MRI, with & without contrast agent (gadolinium); Results indicate an active lesion, but small, and explains my symptoms that have slowly gotten better over after all this time. I am hopeful my symptoms will be gone and things will go back to normal.

Update: Oral medication arriving early next week!

There was a minor setback in getting things ready with switching medication from the inject-able to the oral, BUT delivery is finally setup and the switch to an oral medication is really happening!

Next Tuesday (6/14), a FedEx truck will be making very important delivery to our home... yup, it's my new oral MS medicine, Tecfidera. I no longer need to wait in line at the pharmacy, every month, to get my MS medicine. Tecfidera will be a mail-order medicine shipped from Kaiser's Specialty Drug Pharmacy located in Daly City, CA.

For the first 7-days I will be taking the lower dose (120-mg) orally, twice a day. Then, if I am tolerating the lower dose I will take the regular dose (240-mg) orally, also twice a day. I will continue my followup with my neurologist on blood work and yearly MRIs to make sure everything is staying as it should be.

Dream come true?!

My last posting was about the change from Copaxone to Glatopa, was pretty seamless really.

~*Fast forwarding about six months*~ .. Big changes may be in the very near future (as in 13 days)~

My last neurology appointment (4/29/16) went well - my neurologist was pleased with how well I am doing and have done. We spoke about the possibility of switching to an oral medication, Tecfidera (teck-fi-DARE-ah), but I first needed to get some blood work done and new brain MRIs (w/ and w/o gadolinium, the contrast agent) to see if the change would be a safe and realistic option. After waiting two weeks for the results on all the blood tests and MRI's, they all ended up came back looking good. The doctor's comment on the brain MRI results was the best:

Good News, no new lesion and no enhancement in the lesion, indicate good response to treatment and remaining in remission.

How rad is that?! That definitely made my day!!! Ok...so, I will keep you posted on how the switch to new oral Rx goes...(I've only been hoping for this day since, well 9/2008!)

If anyone is curious to read more about Tecfidera, here are a couple links:
http://www.webmd.com/multiple-sclerosis/news/20130425/new-ms-drug-qa

http://www.nationalmssociety.org/Treating-MS/Medications/Tecfidera%E2%84%A2