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

@jlferro1
Good morning! It's a pleasure to meet you. Congratulations on your 30 years post transplant milestone. That's so awesome. Was your donor a relative?
Also, thank you so much for all your tips on how to handle Tacrolimis and hair loss. It sounds like you were able to find an excellent dermatologist that gives very helpful advice!
Has your 30 years as a kidney transplant been a pretty smooth ride for you?

Hi there! @rachel5239

I experienced hair loss with pograf. The hair loss was quite significant. I asked to be switched to the tacrolimus and it is less significant now. I use Rogaine foam for women . The generic Rogaine does not work as fast or as well. It helps to keep what I have. I use it every day. When I first experienced the hair loss early on, I bought hair toppers (wigs for top only) from amazon. I began wearing these mostly until I had enough hair of my own to cover. It has not grown in much since I started the treatment late, but it works great. I am also on a very low dose of Imuran and do not have hair loss with it. Hope this helps. I stopped the prograf.

Josie
@jlferro1

@jlferro1
Thanks for the input! I am now 5.5 years post transplant, and I have experienced hair loss and improvement three times post surgery since my TX. Most recently I had my left hip replaced end of March at Mayo, and I was back to dropping hair again. I think it is the anesthesia and trauma from surgery that does it for me. Eventually, it comes back, maybe not like when I was much younger, but to my new normal. About a month ago they upped my Tac from 2 in the morning to taking 3 in the morning and still 2 in evening. Trough is 5-7, and I dipped below 5. It is a lifelong thing keeping it all stable.

@jennifer0726 Your story about delivered pizza is the reason my family calls me "overly neurotic" about food safety. Before my transplant, I literally ate almost all of my meals at restaurants. On the way to work, I stopped for breakfast, at lunch I would go out with my girlfriends at work and at dinner I would go out. Since my transplant, I have not eaten one meal out and I really miss it.... but I am scared of unsanitary conditions in the kitchen and unwashed hands making the meals now that restaurants are so desperate for help (inexperienced and untrained in the basics). Do you ever eat out or get take out now? If so, what do you order and where do you go? .... Or are you too scared to eat out like me? You are correct that there are definitely challenges being immune suppressed, but we are both super grateful!! ❤

@hello1234 LADIES, MY ADVICE TO ALL OF YOUR FOOD CONCERNS IS THIS:

WEAR YOUR MASKS WHEN GOING OUT TO GROCERY STORES. WEAR GLOVES, WASH ALL FRUIT AND VEGGIES WITH A VINEGAR/WATER SPRAY SOLUTION BEFORE STORING. MOST RESTAURANTS INCLUDING FAST FOOD CHAINS HAVE TO WEAR GLOVES WHEN FOOD HANDLING. CHANCES ARE SLIM THAT YOU WILL GET SICK. I DID GET NOROVIRUS ONCE IN 30 YEARS OF TRANSPLANT. OF COURSE IT WAS DURING THE PANDEMIC. I ALSO GOT C-DIFF THEN TOO FROM MY DOCTOR'S OFFICE. DO NOT TOUCH THINGS LIKE RAILINGS ETC. IF YOU CAN HELP IT AND ALWAYS WASH YOUR HANDS AFTER YOUR VISITS. CARRY ALONG HAND SANITIZER ALSO! HOPE THIS HELPS! YOUR KIDNEY/LIVER DOCS WILL TELL YOU NOT TO ISOLATE YOURSELVES. GOD BLESS !! XXOOXOXOXOX

@hello1234

The pleasure is mine! No not smooth sailing. There is always going to be a few bumps along the road. Sometimes its a change in medication but otherwise I would just stay positive and go with the flow. It took a while to get used to the meds but then afterwards I did great! My mother was 65 years old when she donated. She had 3 kidneys and 3 ureters! Truly amazing! I also have 3 ureters! A blessing indeed.