This Is MS Multiple Sclerosis Community: Knowledge & Support

I am a 54 year old female with RRMS. I was dx'd in 2000 but had MS for about 6 years before that. I didn't use any meds until the BG12 trial which I started in January of 2008 for me so I have been on the correct dose since the start. It was measured against a higher dose, placebo and copaxone.

Since it received FDA approval today, I can now gladly answer any questions that anyone might have.

Hi MBLG, this is Avinash here. I had been diagnosed with RRMS some 6 months ago. I had not started any medications yet, and had to in a short while. Give me your opinion what are its benefits above Avonex. What are ur MS lesions status after BG12 trial? Since I am M 25 by age, this info will be of great help for my future. Also what are side effects of BG 12?

Welcome to ThisIsMS. I'm certain that many folks here will have questions about BG12.

Here are a couple to get started...

How has it affected your MS, e.g., MRI as well as clinical symptoms? Have you stabilized or actually improved? If you've experienced improvements in your MS symptoms, then it would be great if you could elaborate on those improvements.

What side effects have you experienced and how did you deal with them?

BG12 has been reported to cause chronic depletion of glutathione. chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic15421-690.html#p197021 Have you ever had your levels tested? Was this a concern during the trial? Were any of your side effects attributable to reduced glutathione levels?

BG12 is known to reduce white blood cell counts. Have you had any problems with this, e.g., increased infections, etc?

Thanks, NHE

Hi Avinash,

I will answer your questions based solely on my views. I don't care for needles so seeking a treatment with needles was not a strong option but after 5 years on this trial with it's bi-monthly blood tests and my need for monthly B-12 shots, I have gotten over the needle fear.

That being said, I preferred not to do Avonex or Betaseron, or even Rebif, because of the flu-like side effects. My work was the reason since I worked almost everyday.

My reason for starting BG12 was that in 2007, I had new lessions for the first time and a weakening on my right side. I will say I got scared since I was total mobile until then and still am. Since on BG12 I have had no new lessions but I also haven't had an MRI in 3 years or since 2010 so that answer is not totally possible. The trial I am on does not call for MRI's. I believe one of their trials does have MRI's. My results are based on various eye tests, exams, cognitive tests and labs. The first two years they did EKG's.

The side effects will differ for each person and for me it was skin flushing, itching, dry mouth, lower digestive issues and a runny nose that was not mucous, but very watery. The side effects started about 3-4 hours after taking the pills which is how I knew I had live product from the start. I also did not get any side effects after the "lunch" dose which made me realize I was on the twice a day dosage instead of the higher dose. The side effects for me, lasted about 5 months. The only labs of mine that were red flagged was the last one in March where my calcium and potassium levels were up so I will be redoing the labs next week. I did start a calcium supplement six months ago since I am menopausal so that could be it.

I hope this helps.

Hi MBLG,

I just wanted to thank you for jumping on board and sharing your BG12 experience as soon as you were able to do so. Information like this is invaluable to pwms. You're my hero of the day.

I hope things continue to go well for you.

Did you note any improvements or reversal of symptoms?

My pleasure...we are all in this together!!!

BG12 has been reported to cause chronic depletion of glutathione. chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic15421-690.html#p197021 Have you ever had your levels tested? Was this a concern during the trial? Were any of your side effects attributable to reduced glutathione levels?

BG12 is known to reduce white blood cell counts. Have you had any problems with this, e.g., increased infections, etc?

Thanks, NHE

Dear NHE,

I do not know my levels of glutathione and how they've been affected by the BG12 but I will ask next week when I see my neuro.

I have no infections in the last five years except a sinus infection this past January as a result of the flu that by husband brought back from a business trip. Not the present I hoped for from NYC...LOL!

MB