Sunday 10 January 2021

Mavenclad!

I should have known that switching DMD's wasn't going to be quick or easy - remember my Aubagio washout and relapse before Tecfidera?  This wasn't any different.

Thankfully there wasn't a washout period but there was a bit of work I needed to do before starting my new medication.  Blood work needed to confirm that my vaccinations were up to date - which I found out that I was not immune to chicken pox! In order to get that vaccine I needed to stop Tecfidera for 1 week and I couldn't start Mavenclad for 6 weeks after the vaccination.  That meant I'd be without any DMD for 7 weeks, which stressed the heck out of me since I had a huge relapse was between DMDs.

During this time off I decided that I should try to control things that trigger my MS so I picked up the Overcoming MS book. I felt that diet was the easiest thing for me to control so I stuck to it for that time! No meat, no dairy, limited fish, plenty of fruits and veggies!

The 7 weeks flew by and I was due to start Mavenclad! I decided to take them after lunch so I could get through the side effects while hanging out on the couch. The first week for me was 8 pills over 5 days.  The first day I was SO nervous to start, I was nauseous before even taking anything.  I finally mustered up the courage to wash my hands and take the first two pills. Easy peasy.  Maybe 30-45 minutes later the side effects kicked in. I just felt unwell. Almost like the beginning of getting a cold.  Drained, headache, sea sick, just a general feeling of blah.  You can't take anything within 3 hours of your treatment so I just set a timer and decided to wait it out.  Saltine crackers and ginger ale were my saviour! By the time the 3 hour timer went off I didn't feel the need to take any Gravol or tylenol.

Days 2-3 were very similar. Day 4 & 5 I just needed to take 1 pill each and the side effects didn't seem as bad.  During the first week I also found I had some really weird, vivid dreams, backaches and headaches that continued on and off.  Plenty of water, an odd Motrin helped this.

And that was it! Week one was done!  I felt great! Until a day or two later, I felt SO nauseous after eating lunch and I tried everything ginger - tea, ale, chews (highly recommend!).  Eventually I discovered that taking a ginger gravol 30 minutes before eating helped.  The next couple of weeks were fine! The odd day I'd get hit with the fatigue stick or nausea but nothing that I couldn't handle.

The 4 weeks between the first pills to the next round of pills came before I knew it and I was at it again! This time it was only 7 pills over 5 days.  Day one went SO well.  I felt completely fine after that I thought I did something wrong! Until dinner time came. Bam! The nausea was back! The days went by quickly, each day came with new symptoms.  A few days after my last pill I had a decent amount of pain and anxiety, yesterday I had no appetite and the horrible MS hug.  But those symptoms pass and I've learned to listen to my body.

Reminder: take it easy.  The days will get better.  It'll all be worth it <3 

Wednesday 6 January 2021

2021

Well here we are, it's 2021.  

I turned 33 yesterday.  

The pandemic is in it's second wave and we're in another lockdown with restrictions and closures.  

The US politics are a mess, there were riots today.  

I just finished a new MS therapy!

Let's rewind to last September.  I called the MRI department to make sure my November MRI was still booked (medical appointments were being cancelled or rescheduled due to Covid) and they actually had a cancellation the next night.  The MRI was quick and I finally got some information about my results from my family doctor - new lesions. Again. That's new lesions on every MRI for the last 3-4 years. UGH.  I later called my MS Neuro team and went to see them a few weeks later.

New lesions meant Tecfidera was not working. Which we suspected last year...

Rebif/Injectables - failed.

Aubagio - failed.

Tecfidera. - failed.

It was decided that the first line medications weren't doing what we wanted them to so we had to step it up to a second line. I was given two choices and a few weeks to make my decision.

1 - Tysabri - monthly infusions for the rest of my life, unless I become JCV positive as it increased a risk of PML.

2 - Mavenclad - 2 treatment courses over a 2 year period that is shown to show less disease progression for 4 years.

After multiple pros/cons lists, talks with friends and family, and plenty of research, I finally decided on Mavenclad.  Stay tuned for my Mavenclad journey!