Methylcobalamin Injections?

[lynncm]

I was diagnosed in Feb 2024 and am on riluzole only (was on Relyvrio for only three weeks before being pulled). My neurologist doesn't believe Radicava works. Although she did not bring it up, my physician is willing to prescribe high dose methylcobalamin based on the 2022 JAMA study.

I am wondering if anyone is on methylcobalamin injections and how much this costs monthly out of pocket? Has anyone had any luck with insurance covering?

Thanks for any advice. We are all in this together.

 

[Nikki J]

I did them for a while. One insurance covered at their highest copay. The other did not. You need a compounding pharmacy and you should shop around. My neurologist did this and found the most expensive was three times the cost of the least. You can get it shipped from out of state so don’t limit yourself. The pharmacies I know are East Coast so probably don’t ship to you but you could ask. I usedJohnson in Waltham MA. My sister used Hopewell which I think is in NJ

 

[richdees23]

I was taking injections for about 12-18 months back in 2019-20. Yes, Hopewell is in New Jersey and that's where I drove to get them. Like every other drug, it's difficult to judge its efficacy. I was also taking riluzole at the time and ibudilast from overseas. I had no adverse reactions or side effects. I was able to inject myself at the time and the reason I stopped taking them was financial. I was paying out of pocket and I don't remember the exact amount, but I think it was around $250. for a month's worth of shots.

 

[steve613]

We are using Johnson in Waltham Mass. They ship prefilled syringes for 45 days at a cost of around $280 including shipping.

 

[Jensen73]

I am on these shots. I paid $327 for a months supply. Does it work? I’m not sure, but my urine is now a pretty pink. (This is expected)..