Small Disclaimer: The following post is through the lens of my experience with MS, and is only meant for informational purposes. Always discuss with your healthcare provider, neurologist, or MS Specialist, any changes you want to make to the management of your MS. Links are provided for more information, and will open in a new tab, so you will not loose your place while reading the blog.
It’s been a painful while until my last post, and I say that because I cringe everyday when I realize how long it’s been since I’ve posted. I keep pulling out my drafts in progress, working on them, cog fog and indecisiveness get in the way of putting anything out, and the cycle continues. So, its time to do a Part 2 of MSwhile, my homage to Stephen Colbert’s Meanwhile Segment on the Tonight Show with Stephen Colbert.
Getting a Pfizer vaccine after J&J was put on pause
Last week was a week of anxiety, as it came time to vaccinate, but then the J&J vaccine I had an appointment for, was put on pause, and the appointment cancelled. I then was able to get an appointment to receive the Pfizer vaccine, on Friday. During the weekend I was dealing with the common side effects of a dumbed down version of a virus, to introduce it to your body and build immunity. Most people receiving an mRNA vaccine, Pfizer or Moderna, do not experience very many reactions after the first dose, but may after the second dose. After the first dose however, I experienced marked soreness of my injection arm, chills, body aches, perhaps a very low grade fever, a feeling of malaise, less appetite, more fatigue, and difficulty sleeping the night after the infusion.
I strongly recommend budgeting time to rest, taking some ibuprofen or Tylenol, and just giving yourself all the self care you are able to, or asking friends or family members to be on call, in case you need any help. I also used the little energy I had to make myself a recovery meal, with lots of garlic, onions, chard.
Still, I am so very thankful that I got the vaccine. This means so much to myself, my family, and my children. It’s a glimpse of light to me, through this pandemic, because although I will still retain my measure of caution, I’ll be returning to California, to my husband, to my family in California, friends, and I’ll get to see vaccinated members of my extended family on the car trip back home. (Still not comfortable flying one a plane, as I may have less immunity because I’m on a B Cell Modifying therapy.)
Additional Links for More information on the Covid 19 Vaccine
Dr. Fauci, speaking of the pause on the J&J Vaccine
The National MS Society recommendations on Vaccine timing with MS Therapy
Where to book a covid vaccine appointment
My Upcoming Performance in Partnership with AnCan Support Groups and The Marsh Performance Solo Arts Heal
I meet in a biweekly virtual MS Support Group, and hosted by AnCan. The organization was founded in 2010 by Rick Davis, in efforts to remove the obstacles that can come in between meeting with your peers, while going through the challenges of a Chronic Illness.
The Marsh Stream, a Performance Arts group centered in the Bay Area in California. The host a Solo Arts Heal presentation to encourage participants sharing their artistic talents, and how sharing these talents help them in the healing process.
My performance will be an improv based tap dance, riffing with my brother on the mandolin or guitar, as he is equally talented in both. Then I will sing a song, that I listen to for comfort and validation while dealing with the Pain that MS can throw in my path.
Both singing, and tap dancing have been a way that I can express myself, no matter what emotion I am feeling. When I took Intermediate Tap Dance for the second time and BYU, I enjoyed staying after class, during the free hour before the next class. I loved the routines we learned, but my favorite was improvising because I could just let my body and mind go, surrendering to the music and the rhythms while I escaped the pressures of trying to appear normal, while trying to deal with Multiple Sclerosis and attend college. I don’t possess the same longevity I did when I was 22, when my lesion load was less. Yet, I still love to put on my tap shoes, and enjoy the brief moments of time when my partially numb feet listen to me and respond to the music.
Elezanumab not proceeding to Phase 3
A little over two weeks ago, I received the news that Elezanumab, the Clinical Trial for a hoped for regenerative/remyelination therapy would not proceed to phase 3. I met with my MS Specialist, who also was the lead neurologist in the UCI portion of the clinical trial, via a Telehealth call, a little over a week ago. She told me that the endpoints were not there, and the drug had failed to reduce disability or lessen people’s recorded EDSS (Expanded Disability Status Scale). She said there was really, only like one person who improved. I asked her if I was that one person, considering my EDSS had improved, but as it is a double blind trial, we don’t know if I got the drug yet. She presented me with comfort, saying that if I had been on the drug, possibly a Phase 2b could investigate any improvements in patients that had been benefited by the drug. Or it could also be, that I improved because of all the other things I have been doing for my health, or possibly the DMT I take, Ocrevus, has been helping me.
I am working on a blog post to discuss what else I’ve done in this last year as I review the photos, videos and documentation I made, before going on the trial, while on the trial, and during the six month observation of the trial, after receiving 12 month infusions of elezanumab. There are some complimentary therapies I used regularly, such as meditation, physical therapy, qigong and other exercise I did when I feared to access physical therapy because of the pandemic, dry brushing, barefoot shoes, and a Wahl’s Protocol adjacent diet. (I say adjacent because of modifications I needed to make to suit my lifestyle and abilities.)
I’m also working on compiling a video documentation of this period, because there are a lot of videos I recorded and never shared, documenting my slow improvements, while still experiencing sustained disability that has not gone away. My MS is full of contradictions, as I have bursts of mobility, times of less mobility, and times where I sustain great difficultly in moving.
I’m going to continue to give my body time to recover after the first vaccination, I’m going to be enjoying spring in the Blue Ridge Mountains, despite my seasonal allergies aggravating my MS Symptoms, and practice with my brother for our performance on April 28, 2020.
There is also an upcoming virtual concert, sponsored by Genentech next weekend, April 24th. The #MSVisability Concert will be featuring major peformers, and also the release of my very good friend, Damian Washington’s, new MS Music Video! Excited to watch it all and relax on the weekend, in between preparing for my own AnCan Marsh Stream performance on April 28th. Hope to see you at both!
May God Be With You Til We Meet Again! 🧡🙏🏼
My husband has MS. He has trialed many drugs over the 20 plus years since diagnosis. This one was hands down the best. He made slow, steady crazy good improvement. Neurologist was thrilled. His portion ended and within months after the trial
ended he started declining. The neurologist says he would put him back on it the minute he could. Then, we get the call that the trial
Was halted. We were crushed.
I’m so sorry to hear about your husband declining. I really was blindsided when I heard. When I talked to my MS Specialist, she had mentioned that improvement hadn’t been shown, or had only happened in one person. I pressed, asking was I that one person, having seen improvement in some of my symptoms. She said that if when it is unblinded and if I was on the drug, she could do what she could to request a phase 2b of the trial. I don’t know everything that is involved. I hope to have some more positives to share, I really hope that your husband stabilizes. Would you mind me asking which type of MS he has? I have RRMS.