DIY PrimeC

[santimo]

Hi Everyone,
I hope you are OK.
Warning: Please talk with your doctor, Im not qualified to advice anyone about this.
I just started 10 days ago to take Ciprofloxacin + Celecoxib, the compounding medications of PrimeC, a treatment being studied for ALS. Phase 2 trial was successfully and will start a phase 3 trial soon.
I wanted to ask if anyone has done this before or for people who enrolled in the trial to share your experiences.
-Have you felt any side effects? I've been fatigued the past couple weeks, but also somewhat busy so its hard to evaluate. My neurologist is aware and we are monitoring this.
-What dose did you use if you are taking it outside of a trial? My neurologist mentioned they had access to drug brochure and protocol but I still havent been able to discuss in person and I don´t know how well it matches the propietary formulation. Feel free to send me a DM to discuss this as I don´t want this thread to become a tutorial for taking experimental medicine without prescription.

Either way, I'm happy that my neurologist was willing to discuss this and I was feeling a little optimistic about the treatmen, but not that much since I've been feeling not that well the past couple weeks.

 

[maryna]

Hello,
I am thinking to try this combination with my husband. Though the doses of Ciprofloxacin are usually 750mg and Celecoxib 100-200mg, the dose used in trial is 1456mg BD. I am not sure what combination they have used in PrimeC.
Also, why was the company granted extended patent for the extra 4 years?
What was your rationale for using PrimeC combination?
Mine is my husband had Covid in 10.2021, no hospital admission. However, he lost a lot of muscle mass immediately but regained it afterwards. However, it was followed by 2 AstroZeneca, next 2 Pfizer vaccinations. I think initial activation of neuroinflammation was spiralled by the vaccinations.
Please, let me know why you and your neurologist decided to use it, what doses of the drugs and any side effects.

 

[JAM]

Hello Santimo,
I just read an article about Prime C out this morning about that clinical trial. I believe there will be a speaker updating results at a symposium in a couple of weeks, so hopefully we will get good news. The article I read was in PR Newswire. I’m not sure if that’s a big pharma journal as I’m still learning which are most reliable sources etc so I guess read it with caution.

 

[Nikki J]

PR newswire puts press releases on their website. It isn’t a journal. I think you saw that it will be presented at the NEALS meeting. The NEALS consortium which I have mentioned before in the context of the webinar is an organization ( cofounded by my neurologist ) of ALS specialist. It is called the Northeast consortium but now has members from all over the US and some international ones. At their annual meeting they have presentations that include updates about drugs going through the trial process. Prime C data will also be presented at the MNDA symposium in December which is the biggest meeting of ALS specialists internationally. Both of these meetings have presentations that could be positive, negative or neutral.

 

[Nikki J]

People with lived experience of ALS ( PALS, CALS and former CALS) can attend the neals presentation virtually. Register here https://event.fourwaves.com/2024neals/registration

 

[JAM]

Thank you Nikki

 

[santimo]

Hi JAM and Maryna,
To clarify, most information we have about PrimeC is from press releases, there is still no peer review analysis from the phase 2/2b and open label trials. This information is potentially biased or exaggerated in the sense that is more aimed at investors than general or scientific public. My rationale for trying it is just that it is potentially able to slow disease progression based on the limited data we have and the potential risks can be somewhat assesed as each Drug in primeC has been tested before and are well documented.
On a personal note, my progression seems to be fast so I included that in my personal risk evaluation.
Regarding dosing, my total daily dose is about half of the reported total daily dose of 1497 mg. I think my neurologist is just being conservative, now that 2 months have passed I will discuss the dose again.
I didn´t experience any side effect besides one week I was very fatigued, but I can say for sure if it was the PrimeC.
I'm looking forward for the NEALS and MND congresses as we will hopefully have more information by then. Also Merit Cudkowicz from the MGH (one of the leading ALS research centers) will be on a webinar for my local ALS association and will be focused on PrimeC, so hopefully more useful info there.

 

[Nikki J]

I didn’t see neurosense in the neals agenda. Rereading the press release there will 2 abstracts so look for them if the poster sessions become viewable which they usually are in these types of hybrid conferences. At Mnda there will be a platform presentation by Dr Cudkowicz. These sessions are divided by topic and each speaker gets about 15-20 minutes. The MNDA is 100 British pounds to attend virtually

 

[lgelb]

Please see this thread for the many reasons not to rush into DIY PrimeC. You won't be matching the tested doses, there are significant risks for many PALS, and the efficacy data are too early for primetime.

Again, we've seen this movie before. It may have a different ending this time, but no one needs to risk their health to find out.

 

[santimo]

My local ALS association just shared a recent webinar about primeC, conducted by Dr Cudkowicz.
They even discuss getting it off label (dr Cudkowicz recommended to just wait until phase 3 trial)

 

[JAM]

Thank you for sharing this! I will watch it later. Appreciate everyone for letting others know of new possibilities/trials/studies. There is so much out there it’s hard to keep up on them all or even find them. Any updates help (at least for me