Hair loss after transplant, probably Tacrolimus: Anyone change meds?

I’m 10 months post kidney transplant. I have thick and curly hair but losing a lot of hair due to Tacrolimus. I take it 6 capsules in the morning and 5 at night. In addition, I take 2 capsules of Myfortic (360 mg. each) and 2 at night, plus 5 grams Prednisone once a day. To help with the hair loss, I take 10,000 mcg. of Biotin, and I use Biotin shampoo. It seems to help a little.
I dined out only once on our wedding anniversary last December. Went to 2 pm late lunch which was nice as we were the only customers. Sometimes we do order takeout foods, but I still heat it more at home. No raw vegetables for me.
Being a transplant recipient is a challenge but beyond blessed and grateful for the gift of second life.

I do rinse my toothbrush in alcohol. I don’t know if it’s really necessary but it’s a little trick I picked up as an infection control coordinator for our dental clinic. I got back into the habit of rinsing my toothbrush nightly while going through chemo and transplant but now just a couple times per week.

I think you don’t have to obsess over things, just use a common sense approach to hygiene and keeping bathroom items clean. You’re immunocompromised but you still have an active immune system. ☺️

Thank you so much @loribmt and @scottij for your advice regarding shaving. You both gave me confidence to use a razor, which is my preference. (I will purchase some alcohol). Lori, did I read somewhere that you also rinse your toothbrush in alcohol too?

Well, I actually shave my arms and legs because it makes the use of sunscreen so much easier. As you know, skin cancer is an increased risk for all the immuno-compromised community. I am not nearly as disciplined as @loribmt but I do use a Gilette Mach 3 blade and rinse it clean with a quick splash of alcohol.

I have had a variety of nicks on my face which also motivated the beard. They do take longer to heal than before but nothing has grown into a life threatening infection.

Best always,
s!

Hi @hello1234 Not sure if you saw my answer regarding your post about using an electric vs disposable razor. In a nutshell, either means of shaving is fine. It’s overkill to change a disposable razor daily.
Use on clean skin with shaving cream or soap, to make sure you avoid skin abrasion. When finished, rinse the razor well with soapy water, and if needed, scrub with a toothbrush. Then rinse with alcohol and let air dry outside of the shower so it’s not just lying in a moist environment. It helps keep the blade sharper too.
A shaver can also harbor bacteria as it collects skin cells and can also abrade skin if you have any raised areas of skin or blemishes. If the heads can be removed for cleaning and disinfecting then they’re fine to use. If not, then stick with your disposable razors. I’m immunocompromised and use both. I’m just careful to clean them and have done that long before I had my transplant.
Does that make sense?

@scottij Your daughter's outside wedding sounds super lovely and I am so happy to hear that that your Mayo Transplant Team gave you an enthusiastic green light to attend!! In the coming weeks I think I will try your "late lunch" outside idea as one of my first adventures into the world of restaurants. I live in Florida so once season passes, the restaurants should be fairly empty of tourists.
I was not aware that Tacronlimis could have a negative effect on cartilage. It sounds like you are an avid walker with 40,000 steps a day as your average! All I can say is WOW and then apologize for being so lazy. I applaud myself with three times around my neighborhood! 😊 Please keep us posted on your upcoming surgery. I am sure you are looking forward to getting rid of the pain as soon as possible!
Can I ask you an unrelated question? I just posted a question about shaving with a disposable razor instead of using an electric razor. Do you think it's safe to use a new disposable razor each day or do I need to stick with an electric shaver to avoid any possibility of a nick?

@hello1234 . Many thanks for the congrats.
We have started to venture out for late lunches and early dinners at outdoor locations here in the Sonoran Desert/Tucson. That said we do mask everywhere. I am not totally comfortable returning to activity but upon advice from Mayo in response to my query about attending my daughter's wedding, "What is the point of being alive if you are not living."

The wedding was a successful small outdoor affair. Everyone was vaccinated per demand of my daughter. The real loss for me due to tacrolimus is cartilage in both hips. Heading to Mayo on April 11 to replace the right hip and hopefully address the left hip later this summer. Still I am averaging 40,000 sometimes painful steps per day.
Best always,
s!

Good morning @scottj and Congratulations on your two year anniversary! It sounds like you are doing wonderfully and back to enjoying life. Your buzz cut and snowy white "stubby" beard is a very handsome look and definitely on trend for men. Not sure I could pull it off (giggle).
Thank you for joining in Scott. Your positive energy comes through your post! Obviously, you are back at the barbershop. Have you also started to eat out or do some public activities? I am not sure where in the country you are located, but do you feel comfortable resuming some of your normal social activities? (I assume you are on Cellcept and Tacronlimis too).
Thanks again for joining in the discussion!

Heart transplant here two years ago. Male also so no wig and it was thinning ever so slightly before, I am just rolling with it. I go to Great Clips and get a #2 buzz every four weeks and on a rather self-centered basis it looks good, Combine that with the snow white very closely trimmed beard and I am literally a new man. Though she-who-must-be-obeyed enjoys the look of the facial hair, the feel is not her favorite. It is stubby and pointy...kind of like me.
Best always,
s!

Wow, thank you @jackiez for jumping in! You shared lots of excellent ideas. I am thinking about researching a wig as a possible solution since I am not crazy about the idea of changing my medication away from Tacronlimis. I was surprised to hear that your transplant team did not like idea of oral Biotin. Did they share why they prefer that you don't take it? I currently take one every day so I am curious if I am doing something bad for the transplant.
I like your idea of just asking for a polish change. That's a nice safe alternative to a full manicure!
I totally understand your desire to engage with life again while trying to keep the risks minimized. It was nice to hear that you successfully enjoyed a wonderful long vacation with nice restaurants, etc. It gives me hope that I may join in the fun too! It's been a long isolated two years of being scared so "a nice restaurant on vacation" sounds like HEAVEN!! ❤ Thank you for sharing all your experiences and ideas Jackie!