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

@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?

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?

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!

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?

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. ☺️

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.

@leahd It's so great to hear from you! 😊You and I are having the same experience so I am going to take it as normal for our stage in the transplant. I will have my two year anniversary in July. I take Biotin orally and I use the Biotin shampoo and conditioner too. I was hopeful that the hair loss was slowing down but this month it really picked up and gobs were coming out. After reading everyone's very helpful comments I am coming to the conclusion that everyone is correct. The hair loss appears to be a combination of the Tacronlimis, the stress of a major surgery, and just plain life stress (covid, etc). I was very happy to hear that some people had their hair stabilze or begin to grow back after time. If not, I can always buy a wig but at least I have my new kidney! You are correct that a transplant is not easy, but definitely worth it. I am very grateful for my new life too. It's wonderful to hear from you Leah! How is everything else going for you?

I am not exactly sure why no oral biotin. I do have another post transplant friend that has been taking biotin and it altered her Tacro scores. So Mayo told her to stop taking it. Maybe it’s different for each person.

Hello!
After my transplant 2 years ago in February, my hair came out in handfuls, much like it did after childbirth but more intense. My hair dresser recommended Active for Women Shampoo and Conditioner. Within a week, I noticed my hair was not coming out in my hands as I styled it, which was huge. Hairdresser said that time after time, she hears exactly what I reported - it slows/stops hair loss and encourages new growth. It's about $50 on Amazon. Not cheep but helped. I also took Biotin each night. Hair stayed thin but did begin regrowing. I had this layer of 1" hair sprouting straight up in the air for several months. Very attractive:)

This past September, I developed acute Pancreatitis and was hospitalized for 5 days - highly painful, would not recommend it. We suspected drug related cause, as I don't drink alcohol and did not have gallstones (2 leading causes). So we changed Tacrolimus meds to Cyclosporine. So now I take Cyclosporine and Myfortic. I was able to wean off of Prednisone. Cyclosporine has its own side-effects, but my body seems to prefer it. I feel better overall.

My hair is back to being pretty thick again - 80-90% of what it was. I do not know if hair loss was just the trauma of the initial transplant and nephrectomy surgery, and now my body has recovered. If the Active caused the stop of hair loss and created new growth. Or if it was changing from Tacrilimus to Cyclosporine. Perhaps a combination of all. My hairdresser said that when the body experiences trauma, it immediately sheds hair, and pools its resources to healing. Then if trauma continues, it stops hair growth, because hair is not important to survival. Transplants are miraculous, but also traumatic for our bodies, "What is this? And who does it belong to?"

I noticed people talking about food on this feed. So I will share, I go out to eat often. If place looks crowded, I go elsewhere. I eat salads and raw veggies all the time. Just careful about where, if I am eating out. And make sure to rinse, if eating them at home. I have not had any problems on either front.

@stephanierp 😊 Hello and thank you for all your excellent comments and advice! I am so sorry to hear about your acute pancreatitis and hospitalization. On my last abdominal ultrasound it said that I had "sludge" in my gallbladder. That's the first time an ultrasound showed sludge iny gallbladder and I am concerned it may be precursor to gallstones, pancreatitis, etc. I never had any gallbladder problems before so I wonder if your pancreatitis and my "sludge" are just possible side effects of Tac. Anyway, I am very happy to hear you are better from your pancreatitis and are now on Cyclosporine...and your hair is doing 80-90% better!!
I noticed you are on Myfortic instead of Cellcept. Did you have an adverse reaction or problem with Cellcept? Or did you start on Myfortic?
Also, thank you for sharing that you go out to restaurants (and leave when crowded!). I am hopeful to be living your lifestyle in the near future. I am still spooked about covid, food borne illnesses, lots of tourists, and untrained kitchen help. What part of the country do you live? I live in Florida and our restaurants are always crowded with tourists during season.