Injection site

[Firefly]

Hi everyone,

I finally got my B12 Methylcobamine. I had to get it at a pharmacy locally
because Hopewell Pharmacy in New Jersey is not contracted in Oregon. $366 for a 32 day supply and
does not include pre-filled syringes. I can measure it out though. They did come with
some preservatives and does not require refrigeration. I sure hope
I got the right mix.

I was wondering about the injection site. I did a search on the forum but could
not find anything. The literature recommends injecting in the arm.
I am wondering if it matters. Does anyone inject in the hip or buttocks
and does it have to be the same injection site each day?

Thank you in advance for all your help. Just a side note. I finally
tried the scolopamine patch, I only use half, I put tape on the other half.
I've noticed quite a decrease with my saliva issue. Such a relief.

Thank you,
Debbie

 

[Nikki J]

It does not have to ( should not) be injected in the same site. Rotate sites. I was told arms and thighs but buttocks are acceptable too.
Do you have experience in giving intramuscular injections? You should at least have been shown if not.

 

[Firefly]

Hi Nikki,
I've never given myself a shot
until today. I injected it in my left deltoid.
I'm seeing my primary care physician
tomorrow, I'll have him
go over it with me.
How long have you been taking it?
Have you noticed any changes?
Just had a respiratory therapist
come out to show me
how to use my new
cough machine. Good times!

 

[Atsugi]

"I'm seeing my primary care physician tomorrow, I'll have him go over it with me."

Try the nurse instead. Docs don't give a lot of shots.

 

[Nikki J]

I started 6 months ago. I don't expect it to make anything better ( it has not). If it works I would live longer which I suppose means slower progression. I can't see any difference but my progress is slow. My sister took it I never thought it helped her but she did live 4 years from diagnosis.
I was not enthusiastic about taking it based on my sister's experience but my neuro strongly suggested it.

 

[Buckhorn]

What is B12 Methylcobamine supposed to do, as far as ALS? I am assuming by your comment Nikki, that it is thought to slow down disease progression?

 

[Nikki J]

There was a Japanese study that indicated that PALS who got it in their first year of symptoms AND who were at that time still able to live independently even if they could no longer work had significantly increased survival. Other groups of PALS did not show benefit. I have not seen it published but it was a poster session at one of the neurology meetings last year and a podium presentation at the MNDA in December

 

[Buckhorn]

Thank you for clarifying Nikki. Is this medication considered "experimental", i.e., will insurance, Medicare pay for it if the physician states it is warranted?

 

[Nikki J]

Depends on your plan. Most do not. My blue cross plan did and my doctor's office said I was the first person to get it covered in their practice

 

[Buckhorn]

Thank you Nikki. Maybe I will ask about it .... My husband is still only 6 months out from diagnosis, so I wonder if that is "early enough" to be warranted? We are VERY fortunate to have excellent medical coverage. My husband has Medicare but also BlueShield, which has picked up everything regarding to Dave's recent LifeFlight experience and hospitalization. We have excellent prescription coverage as well; not 100%, but 80% of everything above $500. So, we are very thankful for that.