PPMS Treatments to Help Slow Progression
As of 2021, there are only two approved FDA DMT treatments for PPMS; one for leg weakness, which is Amprya, and the other is Ocrevus, to slow MS progression. Ocrevus was approved by the FDA for treatment of RRMS and PPMS in 2017, and Amprya was approved in 2010. Although Ocrevus is approved by the FDA, Rituximab, a cancer drug, has also been used for PPMS treatment for several years.1
My PPMS treatment journey
Ocrevus is a derivative of Rituximab and a very effective DMT for PPMS. My neurologist advised me in 2011 to begin Rituximab, which was prescribed for cancer. My research indicated it wasn’t an approved treatment for MS, so I decided to try Copaxone, then Tysabri, and Ocrevus for the last four years.2
If I was able to go back in time, knowing what I know now, my decision to not try Rituximab wasn’t a good call at all. If your neurologist suggests medications that are not approved for PPMS please have a lengthy discussion to understand why. I certainly wish I had done so.
Current treatment study using hydroxychloroquine
There is a current phase two study in the treatment of PPMS with hydroxychloroquine (HQC), an anti-malaria medication, which has been shown to slow progression. The study is a small proof of concept and has shown a larger study should be considered. The study included 35 individuals with PPMS who took 200 mg of oral HQC twice a day for 18 months. Only 8 out of the 35 (23%) experienced continual progressions. Out of the 35, only 11 (31%) experienced side effects such as vivid dreams, upset stomach, ringing in their ears.3
Other potential PPMS treatment development in the works
There are nine other companies currently developing drugs for the treatment of PPMS. The key players researching new DMT’s include MediciNova in La Jolla, California and Atara Biotherapeutics in Aurora, Colorado.
MediciNova's study researched ibudilast, an oral medication that is taken twice a day. The study looked at the use to reduce inflammation. Ibudilast crosses the blood-brain barrier, glial cell activation which supports the nervous system, and brain function and development.4
Atara Biotherapeutics EMBOLD trial utilized an immune therapy administered via infusion. During the trial, infusion medication helped with the regeneration of remyelination or regrowth of myelin on damaged nerves. Several participants showed improvement in disability. A second phase is enrolling 80 participants to further test the effectiveness.5
Treating PPMS symptoms
Leg weakness and balance are a real challenge for most of us with PPMS. This is by far one of the biggest issues I face daily. Amprya or Dalfampridine (Amprya generic) helps improve your balance and leg strength. As one who tends to test medication effectiveness, I skipped a week of Amprya, and my balance and walking were both worse. Needless to say, I haven’t missed a dose since then.
Let’s finish with a little something funny
So what’s funny about MS you ask? I agree not much, yet it’s all your perspective and how you react. Okay, let’s look at my movie theater fun that has shaped my seating arrangement from then on.
What is one of our biggest issues? Yep, bladder control. What happened you ask? Seating in the center of a row and seeing the end of the row on both sides fill up. My thoughts...oh my it’s dark with very little room to get by, plus balance issues and I have to go!
Trying to get by everyone while they stay seated is a challenge. I tried to carefully get by yet stepped on everyone's toes. You hear "OUCH!", I respond "Sorry", yet no one moves. It's funny when I go back to my seat everyone stands up making it easier to get by and saving toe damage. Funny yet effective!
Thank you again for taking time out of your busy day to read my thoughts on PPMS. I encourage you to help make our world a better place. It only takes seconds to pass on kindness to create a smile.
Have you ever heard someone say the following: