Gold Nanocrystal Remyelination Phase 2 Clinical Trial Update - Three months after last dose

Below is an update on my situation since my last posting on July 13.

https://multiplesclerosis.net/forums/gold-nanocrystal-remyelination-phase-2-clinical-trial-update-end-of-treatment-finally-concluded

It’s been about three months since the conclusion of the Clene Nanomedicine REPAIR MS Phase 2 clinical trial. Unfortunately, I started to notice some MS symptoms reappear or become worse about a 6-8 weeks after my last dose. I suppose it’s a result of not having a daily input of a quadrillion gold nanocrystals to stimulate my neurons?

While I still experience benefit from the four-month treatment, I do think maintaining a regular daily regimen would keep my MS symptoms from being noticeable and might continue remyelination. I would very much like to learn how the nanocrystals add the energy to the brain to “power through” neurons suffering from lesion damage. I suppose we’ll find out someday soon from the MRI analysis conducted during the trial.

Check out this recent good news about the Clene VISIONARY MS trial.

https://multiplesclerosisnewstoday.com/news-posts/2022/08/17/clene-therapy-cnm-au8-lessens-vision-problems-ms-trial-rrms/

Regarding my regression from peak MS symptom recovery, here is what I’m currently noticing:

Cognitive issues: I haven't noticed any significant bouts of “cog fog,” however, I've been slower in managing my daily chores. For most of the four months on the Clene therapy, I had no noticeable cognition issues and had increased overall daily productivity. Prior to treatment, I was experiencing the "cog fog" 3 or 4 days a month where I couldn't seem to focus and had difficulty writing.

Heat tolerance: Overall, I think that my heat tolerance has remained stable since I’ve stopped taking the therapy. Minor vision instability/focus issues when I get too hot. Estimated 10% decline from peak recovery. Prior to treatment, I could not be outside for very long in 80+ degree weather.

Foot drop/limping/balance: Foot drop and balance issues are back and I have weakness in my right ankle. About a 50% decline from peak recovery. Fortunately, it is sporadic and I can go about a mile before I need to rest. My walking speed has slowed marginally with occasional right ankle spasticity. I hold the hand railing going down stairs more often now. Balance seems to slightly off when I get up from bed in the morning.

Vision: When on the drug, I experienced fantastic improvement in my visual acuity. Colors were crisper, the fine print readable and my double vision looking to my left improved. Disappointed that I believe I am back to my baseline level. About 80% decline from peak recovery.

Energy levels: Overall, I haven’t had too much reduction in my overall energy levels. Maybe 10% decline from peak recovery. I still wake up early, but am slower getting started and not as motivated to exercise.

Numbness: This symptom recently came back with my toes and top of right foot being numb and my right hand becoming worse. Noticeable right hand joint stiffness. 90% decline from peak recovery.

So what’s next? First, I hope I’m able to maintain some level of benefit from the trial therapy. Second, it would be great for this REPAIR MS Phase 2 trial participants to be able to enter into a extended access study to measure improvements/symptom stability over a longer timeline.

I’m big believer in the Clene therapy. It really changed my outlook on life and made my symptoms almost unnoticeable. I would do almost anything to get access to the drug again and see tremendous potential benefit for those with neurodegenerative conditions. Look at what they are doing for the ALS community!

https://www.biospace.com/article/clene-s-als-treatment-improves-survival-by-70-percent-according-to-mid-stage-data/

Happy to answer any questions on my MS symptom recovery and the clinical trial experience.