Hello. I’m 4 years post transplant and my deceased donor kidney continues to function well and I am so grateful! My problem is skin and bone issues. Mostly skin, as I can’t find anything or anyone who can tell me why my skin is doing what it’s doing. I know that immunosuppressants are not skin friendly but the skin on the lower parts of my arms and hands is horrible!!! It is discolored and scaly and it even gets really dark at times and then at other times it’s lighter but always there. I can’t even find picture of anything simalar anywhere. Even doc ask if I’m on blood thinners and I’m not. I’m a 60 year old female and it’s so embarrassing. I know that as we get older our skin becomes thinner but this is abnormal. My skin and hands look like that of an 80 or 90 year old. I’ve been on 10 mgs of prednisone since transplant. I was recently lowered to 71/2 mgs. I’m also on Tacomalis and legitimize. If anyone has any ideas what is happening to my skin your input would be greatly appreciated
Embarrasing skin: Hello. I’m 4 years post... - Kidney Transplant
Embarrasing skin
you should see dermatologist. I am sure your transplant surgeon must have advised.i was told, Side effect of immunosuppressant is skin cancer. I got mine done as soon as I heard from my doc.
Please do it soon. Protect your skint from direct sun. Best talk to your doc
Thank you so much for your response. I have seen dermatologist , actually 2 different ones and they just say it’s probably prednisone. They don’t know and I can’t find any pics online or anywhere that come even close to what my lower arms and tops of hands look like. And they even get really dark looking sometimes and it’s just so embarrassing. Thank you again
have you considered asking if you could could stop using Prednisolone . I came off it successfully after a number of issues with it. It took a long time for my team to give me the go ahead though and it was done slowly and under supervision with blood tests
My skin has never been the same since taking transplant meds. I’ve put it down to Tacrolimus/Adoport. I get raised moles the same colour as my freckles which I can scratch off but which leave a freckle or blotch.
Sounds like you are having a really tough time .
Best wishes
Jo
If you find something that works please let me know. My skin is paper thin. I have so many scars it looks like input both arms into a shredder. I'm 50 and my skin looks like it belongs on a 90 year old. I've had my transplant for 20 years so I'd still rather deal with the skin than a new kidney.
I most certainly will let you know of anything I find out.
Prednisone did this to my skin! Thinned it completely and caused dry skin. As they lower your Prednisone it will get better.
Hello,
I can relate to your skin issue because I have the same problem. I’m so embarrassed of how old my hands look. My skin was extremely dry and itchy all over due to all the medications I’m taking. I would be up half the night from itching my skin; that’s how bad it was. I told my dermatologist and they recommended to use Cerave itch relief moisturizing lotion twice daily for a month. Then, I use Cerave moisturizing lotion once/twice daily. I use it more often on my hands because it’s the worst. My skin has definitely improved. I even use the Cerave skin renewing night creme on my face. It’s cheaper than the beauty products and works wonderful for nighttime. I hope you find a product that works for you. Have a great day 😊
Thank you so very much for your input. I will most def try the cerave. I have tried it before but maybe I was t using it often enough.
Hope it helps! 
Drink a ton of water, too! I’ve had good results with Nivea skin firming body lotion. When the weather gets drier and colder, I use a thicker body lotion for eczema (I don’t have eczema). I also only use Dove Sensitive Skin bar soap. It doesn’t strip my skin and make it dry. Last thing - sunscreen, sunscreen, sunscreen. 😊
Hi and thanks so much for shareing!
I can definitely relate! And Doctors really dont know everything. I have joined a support group based in Arizona Mayo Clinic for all transplants, and I have learned so much form other patients! It really speeds up my questions, my worrying, and my mental health from worrying so much.
Anyway, I too am a 45 year old female, who has just reached year 3 from a deceased donor kidney transplant. I was on hemodialysis a looooong time, 9 years, probably bc I live in CA. So dialysis I know caused dammage to me, but also transplant drugs have really changed everything. Trust me, I am NOT complaining! I will take the side effects way over dialysis, any day!
So skin issues… i can relate to everyone who has commented. My old skin, my wrinkly old hands, my arm and hand scars are coming back from my childhood! Like old gardening scars and my kitten scratching scars. I am freckley, and some freckles turn into raised blisters or slight skin color bumps. I stay out of the sun, and sadly never go to the beach. Also I learned from my support group that yes Prednisone thins your blood! And it changes your skin. If Ive done heavy houswok and banged my arms, I get large blood blisters under my skin, like an 80 year old would. My support team says that is definitely from Prednisone, and someone suggested topical Arnica gel, twice a day, to promote healing. They did go away slowly. I am on 5 mg of prednisone a day. I am a 45 yo female, and I went into early menopause, about 6 years ago! My OBGYN said, my body was probably in so much stress from hemodialysis, Covid-19( I never had covid but I suffered through financial stress, constant stress and worry, moving back to live with an elderly parent, job loss, my father got Covid at a nursing home and died quickly, family stress, and all the associated covid problems), plus I got my transplant in 2021, during the height of Covid, and no family member could come stay with me to be my caregiver for the 4-6 weeks of required aftercare. They were afraid of getting Covid themselves. It was a lot of stress for me to find a caregiver for whenever the call came in. Long story short, my Gyno said I went into “ovarian failure”, and my body stopped producing estrogen. I didnt know what to expect or look for. So When I started a heavy beggining dose of transplant meds, I was in full blown menopause!! I did finally get my blood tested, and my estrogen was at 0!. Zero, Zip, Zilch! For men, It would be like your body stopped producing testosterone completely.
Anyway, i did notice in your post that you are a female in your early 50’s, which is the average starting age of menopause. I only mention menopause, because having no estrogen, greatly mimics the same symptoms and signs as transplant drug side effects!! To summarize, I was completely miserable, and mentally miserable for 3 years! Until I figured it out. I had to research a lot about menopause, and talk to other women who were suffering too. So menopause greatly changes your skin. It also thins it out. Its dry and prone to acne, and gets those red blood blisters. It darkens your skin color in the extremities, different rashes appear, skin is more likely to tear, lips get thinner, skin freckles and moles change, scars get thicker, skin heals slower, you sweat more, your core body temp rises, you even smell differently! Thats just regular menopause without the side effects of Tacrolimus, prednisone, and Myfortic. So then add menopause skin symptoms to transplant drug symptoms, and all of a normal persons symptoms, doubles or triples. Remember to keep in mind that everyones body is different.
So in summary, if you are a woman who is ages 30-60, who has been put on transplant drugs, I would definitely go get your hormones tested. I suffered so much, needlessly, and once I was put on the transdermal estrogen patch with dayly progesterone, my bones didnt ache, my skin healed up and looked younger, and more supple my inflammation healed, my digestion and weight gain reversed, I had more energy and stamina, i became happier- not so anxious and depressed, and this is a big one… my brain fog cleared up! Wow! I could function! I am sharper and much more clear headed and focused. Transplant Doctors couldnt tell me this, they didn't know. I suffered for 3 years in silence when all I needed was estrogen. For men, I would greatly suggest to also check your testosterone levels.
These Transplant drugs have lots of side effects, but we cant always change them. But we can take care of everything else, like eat healthy, diet, exercize, and check out our health. Hormones play a big role. And most definitely changes our skin health.
Thank you for reading my post. I share my health experiences in hopes of helping others.
PS, my Transplant drugs are Tacrolimus, 5mg 2x a day, Myfortic. (Cell Cep) 500 mg, 2x a day, and Prednisone-5mg, 1x a day
Thank you so very much. I also am going to show it to my doc. I take estrogen but not progesterone and idk why they seem hesitant to prescribe progesterone. Your reply gives me hope!!!
Hi Blessed06!
Oh, I am so happy and grateful that I could shed some light and help in any way I can!
It is not easy, I know. Every day is like something new to figure out.
I am there with you and every other transplant patient going through the same things. I find this support forum to be very helpful
As far as progesterone, it is prescribed 100mg to 200 mg every day. It is for women with a uterus. The reason is, is because Estrogen will make the lining of a menopausal womens uterus thicker. The progesterone counterbalances it. If you dont have a uterus, then no need to take progesterone. I hope I explained that right.
I also take 10 mcg’s of an estrogen pill that is pre-loaded on an applicator, and is placed in the vagina, 2x a week, where many estrogen receptors are. I found that it makes a lot of difference.
As far as the darkening and thickening of skin on your arms, that could be the prednisone. I am no expert. I have been reading other peoples comments. They also say the same things.
If you find a solution, it would be great to know.
Thank you so much for your share!
Best wishes,
Margaret
Thank you SO much!!! I’m printing your post and bringing it to my OB/GYN. I’m 47 and I have so many of the side effects of peri-menopause/menopause that you noted. I chalked it up to the meds, but I’m going to have my hormone levels checked to see if I could benefit from some added estrogen. Thank you, thank you, thank you!
jespos! Your so welcome! I wish I could help other women going into pre- post menopause, who are also transplant patients.
My sister lent me a small purple book, thats on Amazon, called “ Menopause: 50 Things You Need To Know- what to expect during the 3 stages of menopause. By Felice Gersch, and Alexis Perella. It is an easy to read book that explains everything! I definitely recommend it.
When my mom got a hysterectomy in 1985, her OB put a hormone patch on her, during the actual surgery!
But in 2024, I have to almost beg for HRT, and only after a pap smear- to prove I don't have HPV, or cervical cancer. I also had to get a complex blood test, to prove that yes, I wasnt producing any estrogen. It was silly in my opinion. I also had to wait 9 months for an appointment to see a Gyno, at UCSD. Many left after the pandemic.
Another really good source is to watch Dr. Marie Haver, on utube. She is amazing! She says women come from out of state to see her, because they arent getting taken seriously in their local OB/GYN clinics.
I have hearned so much from Dr. Haver. She also does podcasts.
If you like what she says, please share with your friends most women start at 100 mg Progestin 1x at night, and .0500 mg patch, 2x a week. You may need to get an insurence pre-authorization. I know, it is silly! But I do think we kidney people who struggle with sleep, once on a regular dose of estrogen, we will sleep and feel so much better. Including our skin.
All the best! And good Idea to come prepared with information to your doctors office.
I hope you feel better!
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