Nicotinamide (B3) 500mg twice a day for transplant patients?

@hello1234 Yes! I take this every day and when I told my doctor that I didn’t think it was helping and that I was going to stop, they said I should absolutely keep taking it. I guess if it was really working I wouldn’t have any cancer, but what if I’m actually having less because of it? So I continue to take it faithfully every day. Good luck!!

Thank you so much for this information @mollyv 😊
I also see there is a drug called acitretin. Did your team mention any other treatments in addition to Nicotinamide? Do you have any adverse side effects from the Nicotinamide or you are just tired of taking it? Thanks a million for sharing your experience!!

@hello1234 I have not heard of the drug you mentioned. I wanted to stop the nicotinamide because I was so discouraged about the skin cancer. I have no adverse effects from nicotinamide. I’m just going to carry on. I hope it helps!

I am not familiar with Nicotinamide, and I have not located any information except advertisements promoting the product. I have developed a habit of being wary of promotional health supplements.

@mollyv, I commend you for discussing the use of Nicotinamide with your doctor.
@hello1234, Where did you read about it (Nicotinamide) as a prevention for skin cancer?

I did find this information for acitretin. Here is a link that includes usage, precautions, side effects, etc.
- Acitretin (Oral Route)
https://www.mayoclinic.org/drugs-supplements/acitretin-oral-route/description/drg-20061491

Never heard of it. But I live in a high elevation area, so it would be helpful to me. But where did you hear about it? Is it something that the Mayo prescribed?

Hi @krsti and @rosemarya 😊
One of my favorite sources of medical information is the National Institutes of Health (NIH).
There are several comments about Nicotinamide used to help prevent squamous cell carcinoma skin cancer in kidney transplant patients. It looks like a couple of very small clinical trials had mixed conclusions.
I have a video consultation scheduled with Mayo to discuss Nicotinamide along with any other possible strategies that may help.
@krsti are you a transplant patient that have started to see some skin cancer form? Did you receive a kidney or liver?

Hi @mollyv ☺️
I am checking in. I am now six year post kidney transplant with multiple Squamous Cell treated with MOHS surgery. Are you still taking Nicotinamide to help prevent skin cancers?
How has the the last couple of years been with your skun cancers? Any new skin cancers that needed MOHS or has things quieted down for you with the help of Nicotinamide?
Many thanks for sharing your experience!

@hello1234 Thanks for checking in. I am still taking Nicotinamide - it was recommended by my dermatologist. However, I still have many squamous cell cancers. Probably 4 or more a year. Is it helping? I don’t know. Maybe I’d have many more without it. So far I’ve avoided melanoma, which I’m very grateful for. Best of luck to you!
PS My last skin check I nothing removed or biopsies!

@mollyv
Thank you for the information. I just had a MOHS surgery for a minimally invasive squamous cell on my scalp. Have you ever had a minimally invasive category or always in situ?
The surgery left a large bald spot on my scalp.
On addition to Nicotinamide, do you also use EFUDEX treatment or the light therapy? Are most of your squamous on your face znd scalp too or do you get some on your body too?
Thank you for sharing your experience with me! It helps to know I am not alone.

@hello1234 I’m sorry you’re going through all that! I’ve had either Mohs or scrapes for my cancers. I’ve had them on my scalp, on my face, arms, chest, and legs. I have scars all over. I don’t do the light therapy because my skin is so sensitive from being on Bactrim from day one and I have fair Irish skin. I get checked every 6 months and whenever I see something suspicious. So usually 3-4 times a year.