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

@scottij, I am especially happy that you were able to enjoy your daughters wedding! Our son was married 4 months after my transplant in 2009. I didn't have the Covid precautions to contend with, but I do remember how concerned my son and bride were about me and the food preps. Due to my pre transplant conditions, I was skin and bones, and very weak. My transplant team okayed moving my 4 month post transplant visit to 5 months because of the wedding.

Scott, What are you doing to rack up an average of 40,000 steps per day?

One thing I did notice in the packet for my one year biopsy at Mayo, it said to stop Biotin several days I believe before your labs at Mayo. Started doing this whenever I have labs and my numbers have come up a little bit so perhaps it does mess with the numbers. They didn’t tell me to stop taking it altogether though. I have taken it a little more sporadically recently because when I was sick I was only taking the required meds. I may even stop taking it all together and see what happens. So wonderful to hear everyone’s experiences!

Hey @jennifer0726 😊 Thanks so much for the heads up about Biotin and the lab results! That's really good to know. Since I am taking Biotin every day and my hair is still falling out, maybe I will take a "vacation" from it too. I don't like taking anything that may effect my drug levels. All I take now are my Cellcept and my Envarsus. My liver enzymes are slightly elevated on a consistent basis caused by the meds so I don't like to add any more stress on the system with more meds if there is not a significant reward (like more hair!) I totally agree with you that it's wonderful to hear about everyone's experience and share tips, ideas and knowledge!

@rosemarya
I don't really shoot for 40,000 but that is generally where I am ending up. Typically, I rise early because I still hear my Dad's voice in my head saying, "Get your a** up and get busy." We have converted a third stand-alone garage into a home gym with a variety of equipment. I spend the first two hours of the day doing crunches, full sit-ups, weights, stretches/yoga and hip exercises (hip replacement scheduled at Mayo on 11 April), Then She-Who-Must-Be-Obeyed; a.k.a. Vicki, and I go on a long walk usually between 10,000 and 12,000 steps. On return from the walk I complete a variety of outdoor activities (watering flowers, cleaning the pool; etc) which adds about 2000 steps. After Vicki finishes with the elliptical trainer in our gym I put 50 minutes/5000 steps on that. After dinner we talk another gentle stroll. Two days a week we do not do the elliptical and so I like to hike in the Tortolita Mountains, really just small pointy hills, to get some good vertical in.

While it hurts a bit I find that not moving enough hurts my hips even more. On the recent wedding weekend I was out of my routine and averaged only about 10,000 steps a day. Those days hurt a lot.

Best always,
s!

I have always been on Myfortic, so I never had an adverse reaction to Cellcept.

I live in Indiana. I'm sure Florida restaurants are more crowded, though your weather is better, so outdoor dining is more of an option:) I think everyone has to take re-entry into restaurants and social situations at their own pace. You will know what you are ready for and when!

At what point did you notice your shedding? Mine started 3-4 months after transplant. I will stop taking Biotin since it’s not much of help with hair loss. Hopefully, my numbers will go up. Thank you all for sharing your experiences.

@leahd Mine started within the first month, because I remember asking my team about Biotin before leaving Rochester to go home. I believe months 2-4 I lost the most. Thankfully it does get better! One other thing I have noticed, my hair gets oily now, like when I was a teen. My new kidney must be making hormones I have not had in years!

Hi all,
I am post kidney transplant on Tacronlimis and Cellcept MMF). I was hopeful that my hair loss would slow down, but I am actually developing a bald spot in the front. I tried Biotin and I have been extra careful not to stress my hair in any way.
Has anyone changed their meds due to hair loss? I guess it would be changing Tac to Sirolimus?
Please give me your thoughts or experiences on this idea. And if you take sirolimus, do you have any side effects?
Thanks everyone!

I lost my hair when I was treated for leukemia. I went through stem cell transplant. That was six years ago and my hair is very thin and patchy. I’m on sirolimus and have been on it off and on for over three years. No change as far as my hair goes. I tolerate sirolimus well and don’t have side effects. My dose had to be adjusted in the beginning. For my hair situation, I decided to wear wigs. They work well for me.

@alive Thank you so much for sharing your experience with hair loss and your positive experience with sirolimus. As a kidney transplant patient I am nervous about the idea of making any changes to my anti-rejection meds, but it is probably the tacronlimis that is making the bald spots. My understanding is if it bothers me enough, the doctors can switch the Tac to Sirolimus. It's hard to know what to do. I don't know if it's worth trying a medication change or just buy a wig.
It's hard to know what's the right decision. Thank you so much for jumping in to help me! 😊