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

2 month + Glatopa update

Since it has been awhile since I've transitioned to Glatopa (since late July 2015), I wanted to take a little time to post an update about my experience.

As I had expressed, I was a little leery in the switch from Copaxone to Glatopa, not only because I was so use to what I had grown to know, but the autoject to administer the medication was different and I was unfamiliar with how Glatopa's support network, GlatopaCare, would compare/holdup to Copaxone's support, Shared Solutions. Change can be difficult, but I had to just go for it and trust the professionals.

It's been a little over 2 months since I began taking Glatopa, and for myself things have been fine. Other than the Glatopa autoject being slightly different, everything else has been relatively smooth. I anticipate that had someone just swapped them w/o my knowledge, I wouldn't have known any difference. The injection sites are similar, but if I remember correctly, Copaxone had updated their site locations as well. I still have yet to utilize Glatopa support network, but I'm signed up should I need it.

Oh, and those who know me.... I am still waiting for Kaiser Permanente to put the the 3-times-a-week Copaxone on their formulary. Mail order for this prescription would be wonderful as well ;)