Skip to main content

Aubagio or Gilyena?


multiple sclerosis funny | Multiple Sclerosis...fun to watch | MS











Last week I posed the need for questions to ask a new heatlh care provider. Well, my appointment  was yesterday, and I am quite pleased with the attention given me from Erica Blackwell at the Eye Institute in Morgantown. Although not a professionally trained MS Specialist, Erica epitomizes the passion that special health providers exhibit for the  MS War.

Here is what I learned:


Q: Why are my feet different colors? What causes this? What can I do?
A: Possible circulation issue since the discolored leg is the "affected" side of my body. Compression socks could help. Physical therapy (which she prescribed) will possibly get me back on track with a more physically active lifestyle.

Since I got a massage today that included reflexology,  I agree that circulation could be the culprit. For a few hours today after the appointment, my legs nearly matched. So, yes, this will be a regular indulgence for me.


Q: What is the best treatment for my MonSter? When can I start? (I have gone without any disease modifying drug for several years.)
A: Being on a prescribed treatment is the best advice. When I verbalized my research on Aubagio, she did not disagree that this was a "good" drug, but then she surprised me with her preference: Gileyna. There is nothing truly positive to say about any drug, but I am looking for the lesser of all evils, so I am prepared to listen to any and all you have to tell me. I plan to make a decision within the week.AUBAGIO├é® (teriflunomide) logo


Gilenya (fingolimod) Relapsing MS Pill


I was leaning toward Aubagio, but now Gilyena looks more appealing; even with the six+ hour initial day of treatment. I mean, it was FDA approved for treatment for children. Who would market something dangerous for children?! 

Decisions, decisions...


Q: Is there any type of affordable leg brace out there to aid in keeping me upright while walking?
A:, Didn['t really have time to talk much abut this, but was directed to Amazon to check out all the new-fangled, affordable options. Looking for something to lift the toes on my right foot.



Q: How can I learn of insurance plans that cover physical/occupational therapy or gym membership? (Exercising alone often adds to the pre-existing depression associated with any chronic illness.)

A: Erica immediately wrote out a script for both occupational and physical therapy with the assurance tht my insurance should cover a set number of visits. I made my appointments at Health Plex and will begin July 28.


In a renewed attempt to fight this MonSter, I finally cashed in my Christmas gift certificate from my husband and treated myself to a massaged and reflexology session yesterday. That resulted in me rejoining the Tuscan spa in order to receiver a discount on monthly sessions. Of course, I cannot really afford this, but I've come to realize that MS is an expensive disease. I know what makes me feel better than what BIG PHARM can offer and I am just going to have to bite the bullet and sacrifice any other personal indulgences for the ammo I need to fight  the beast.

https://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/ann-romneys-ms-message-alternately-excites-angers/



So, if selfish behavior is going to be my new norm, it is important to "spy" on MS Warriors with far better resources than I.  Any attention given to MS research is applauded, especially when it comes from public names. Ann Romney has gone out of her way to highlight  multiple sclerosis  in the news. Thank you for using influences unavailable to us peons.

Point to remember: We all put on our pants one leg at a time; be it Chanel or Walmart brand.



Okay, so I seem to have some kind of twisted interest in Ann Romney...

Ann Romney: The Unexpected Treatment That Changed My MS


https://www.everydayhealth.com/columns/my-health-story/ann-romney-unexpected-treatment-changed-my-ms/

So, that's my week. Still looking for Letters to the MonSter to include in my new book by that title. What would/do you tell this beast?

Have a great weekend,
Lisa "The Lady with the Cane"




Post a Comment

Popular posts from this blog

You are invited to Letters to the MonSter

https://www.youtube.com/watch?v=serV18MirGg

Well, the sun is shining at last and it appears that spring is sincerely here and hinting at summer weather.    That means I need a summer project; hopefully one that I can complete. With two young adult books   in various levels of completion, you will surely tells me how ridiculous I am to start yet another writing project. but, inspiration has no rules, right?
           The entire month of March MS Awareness Month led to so many
awesomeavenues of expressions, fueling my need to share and learn with 
fellow MS Warriors. So, let's hare. Let's learn. In Letters to the MonSter, 
my goal is to allow fellow Warriors to vent, scream, rant, and exorcise the  MonSter out of our lives. Let's unite in this project to erase multiple sclerosis from our lives. As Leslie Hillburn stated in the preface to my last tome to this disease, "...the ONLY place you will get any support and understanding in dealing with me (MS) is with Other People wi…

Alien feet?

Okay, so after my initial reunion with social media, I naively imagined today to be more productive. But, no...

For someone who doesn't spend much time perusing sites like Pinterest, my interest has suddenly piqued to the point that addiction be a possibility.

Hoping to find someone of like mind, I instead downloaded a slipper pattern I might knit for Christmas presents (oops, there goes the surprise). It looks fairly simple. Let me know if you give it a try.
https://www.pinterest.com/pin/538250592959842993/

And, then, I found this really neat yoga flow outlined for me.
Since yoga seems to be the go-to exercise for us Warriors, I decided to share. That way we do not have to invent our own personalized routine. You're welcome.




Then, I discovered an entire page of memes that put MS in perspective to the causal reader-reluctant  on-looker. And because  this figure is essentially in the child pose... well, you get the picture.

Of course, any information on foot drop always attracts my at…

MS and children

FDA Approves First Treatment for Pediatric MS On May 11, 2018, Novartis announced that Gilenya® (fingolimod) was approved by the United States Food and Drug Administration (FDA) for the treatment of children and adolescents, ages 10 through 17, with relapsing multiple sclerosis (MS). This is the first disease-modifying therapy (DMT) to be approved for this form of the disease in this age group. Known as “pediatric MS,” nearly all of those diagnosed have the relapsing form of the disease. Children also experience approximately two-to-three times as many relapses as an individual with adult-onset MS. A clinical trial comparing Gilenya to Avonex® (interferon beta-1a) in children and adolescents found that those treated with Gilenya saw an 82-percent reduction in their annualized relapse rate over a period of up to two years. Please see MSAA's online news article, "FDA Approves Gilenya® for Pediatric MS,"for more information. If links are disabled in this email, please copy a…