Transplant anti-rejection medications. What's your advice?

@jackiez, I want to extend my welcome to Connect. Congratulations on your 8 month/almost 1st year with your new heart/lung transplant.
I had a liver/kidney transplant in 2009. I was able to take biotin when I asked about my thinning/wirey/dry hair and my discolored thinning fingernails. I also was told to be sure to get enough calcium.
Jackie, I asked my hairdresser, who caters to cancer patients, about hair products. She recommended that I use gentle shampoo and conditioners that were on the market for cancer/chemo patients. I don't remember the brands, but she got them for me from her suppliers. You might try looking around for someone trained and experienced in the cancer cosmetics for some suggestions.

I am still doing well on Tacrolimus and Cellcept. My dose has been lowered over time and I have been at a stable trough level with an established recommended dose that works for me. I do still experience trembling on occasion, usually within 2 hrs of taking my morning dose. For me it is only bothersome when my husband will notice it and say, "Your hands are trembling". (as if I didn't know it)

@jackiez Have your transplant told you that they want to change from Tacrolimus? or is this something that you are going to suggest to them?

Thanks Athena and congrats on your continued success with your new liver! I’ll try the argon oil. My Transplant coordinator and team suggested only external applications because a biotin supplement can mess with my Tacro level. So I’ll deal with the shedding for now and try the argon oil. The med change in Feb should help too!

Hi Jackie, I'd like to add my welcome. So glad you could join the Transplants group and add your experience, tips and questions. Allow me to introduce you to a few discussions that you may wish to contribute to:
- Heart-Lung Transplant Journey https://connect.mayoclinic.org/discussion/heart-lung-transplant-journey/
- Anyone had a lung transplant? I have questions https://connect.mayoclinic.org/discussion/lung-transplant-1/
- Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

@jackiez, I had a liver transplant in August 2020. My hair was falling out big time. Someone on Connect recommended Biotin. I cleared it with my transplant team and it has stopped the hair hemorrhage! My hair is still thin, but growing back well. I started with 10,000 mcg and reduced to I 5,000 mcg daily. I also dab a small amount of Argon Oil along the roots of my hair before I shower and massage it in. I read that it helps make hair healthy. Perhaps check with your transplant team. Biotin does interfere with some labs however. I have osteoporosis (which BTW is certainly made worse by Tac) and before I do labs for my endocrinologist, I stop the biotin for five days prior.

It’s definitely a life of adjustment to our new organ and meds. I’ve found a healthy diet and exercise help. Glad your otherwise doing well!

Athena

Hi-congrats on your transplant! I am 8 months post heart/lung transplant. The shakiness with Tacro will go down as your strength builds back too. I worked hard on my arm and hand strength and I’m back to normal. I shed hair like a golden retriever (you have to laugh or you cry 😊). So it’s thin and not showing signs of improving. I will likely go from Tacro to another med in Feb, if all goes according to plan. That should help the hair loss. I had some nausea and sleeplessness but that was associated with a BP med that I’m no longer on and the symptoms went away. On prednisone and have much thinner skin now and bruise/bleed a lot easier. Just have to adapt as best I can. In the beginning lots of med tweaks and now pretty stable. Overall doing great!

Hi Jane and Congratulations on your new Kidney. I am a Heart Transplant patient so I won't be able to know a lot about you particular organ but am quite familiar with the 3 Medications you mentioned. Right off the bat the shaking is Tacrolimus that will get better as they lower the dose but it sounds like your at a low level now.That's the only one I'm on anymore and at the beginning it gave me a problem but not anymore . I take 1.5 twice a day and I'm 4 years post but due to blood issues they took me off Cellcept.
The itching tho I don't remember an issue with that. As for the upset stomach and vomiting they did have to put me on another med to help with that it seemed every morning I had a problem and was concerned about loosing the meds I just took, so food was also a necessity. But overall it's mainly getting used to them and I am sure time will help with most of it. I think our bodies are just getting used to so many meds at once it's a bit of an adjustment. By 6 months or so I was pretty much back to normal except for me I caught a virus called CMV from my donor but that's not really a big deal of compromise for the benefits of the new organ. I hope things improve soon , let me know if I can help.
Blessings

Since my liver transplant in 2008 I have not had any reaction to Tacrolimus and still on 1mg twice a day. Just wondering if your reaction may be due to something else but I am sure Mayo will do blood tests to find out.

Hi Jane and welcome. Congratulations on your new transplanted organ. I'm sorry to hear that the side effects of Tacrolimus are making you not feel as well as you'd like to be. I'm tagging fellow members @rosemarya @gaylea1 @jerrynord @contentandwell @danab @estrada53 @webiondev @cmael and others into this discussion to offer their tips and experiences.

While we wait for others to join in, you may also be interested in this related discussion:
- Cellcept and Tacrolimus Co-administration https://connect.mayoclinic.org/discussion/cellcept-and-tacrolimus-co-administration/

Jane, have you talked to your transplant team about the side effects you're experiencing?

@nimalw, I suggest that you start a new discussion in the Transplants group (https://connect.mayoclinic.org/group/transplants/) about getting better sleep after transplant. It's a great topic to focus on.

I am on week 3 post transplant. The Tacrolomus has been hard to deal with. My extremities felt like they were on fire, my feet hands and ears, I was itchy everywhere, I was shaky, my lips were numb and I was so sick to my stomach with diarrhea. They lowered my dose to 2 mega in am and 1 in pm. I still have the on the fire sensation in my feet, but the rest have subsided. I do have to eat something at least 30 minutes before taking my meds otherwise I am sick to my stomach. They just lowered my cellcept to 3 and 3 in am and pm respectively. My hair didn’t fall out and I was taken off prednisone on day 4 post transplant. Still waiting for the swelling to go down. I can see right where they placed the kidney. I hope it does t stay like that long term.