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

I take 1 mg Tacrolimus 2x a day; Myfortic 2x a day; and because I am only 11 weeks post-transplant, I am still taking Valcyte 1xdy and NebuPent 1xmonth (because I am allergic to Bactrim). I have had some stomach issues post-transplant, which I am attributing to Myfortic - not on an ongoing basis but about once a week. I'm not sure a lot can be done about that but will raise the issue with my doctor on our video chat tomorrow:) I take my medicines with food morning and night, but find I can be off half an hour to an hour, so I may need to rearrange my schedule a bit to be more consistent. Jolinda, I might try your idea of waking up early to take meds and then going back to bed!

The NebuPent nebulizer treatments are very rough! It burns the esophagus on the way down- like a chemical burn - and then causes asthmatic reactions for me for up to a week. Because of this, my doctor is switching me over to a drug called Dapsone. I only need to take the Valcyte for a total of 3-5 months and the Dapsone for a total of 6 months, so it is short-term stuff. And I can handle most things, for short periods of time.

I am interested in the research on Tacrolimus vs Sirolimus, in terms of long term challenges.

Thank you so much for your kind words and the link!

@kidsmomof9, I am happy that you have joined this discussion. We are all patients and we are all learning together and supporting each other when we share our experiences. Thank you for sharing. I hope that the biotin will be something you can try. I was told 2500 would be okay for me to take after transplant and my hair and my nails improved (My finger and toe nails, suffered miserably during my months with critical liver failure.)

Did you know that on Connect there is an entire discussion group for Autoimmune Diseases? I invite you to take a look; to join in; and share with your family.
https://connect.mayoclinic.org/group/autoimmune-diseases/

Thank you so much for your input!

A after my transplant two years ago, I was losing a lot of hair, I contacted my transplant team at Mayo and they referred me to the specialty pharmacy. I was told by them to take 1000 mcg of biotin a day. It really helped. I no longer take it. My hair seems to be back to normal.

@kidsmomof9 I guess if your incontinence didn't start until recently we can't blame giving birth!
I take 2500 mcg of Biotin, twice a day. I believe that amount was what my transplant team recommended, I always try to follow their recommendations.
The transplant dermatologist I go to has said that anything over 30 SPF is a waste, and if it costs more to not bother! I have seen this mentioned in other writings also. If it's not more costly of course, it can't hurt.
I don't know anything about autoimmune conditions but it must be troublesome to have it widespread in your family. So far, we have not had any of those situations.
JK

Thanks JK ! My youngest kids (twins) are 23 so I would have to say meds, but then I take a lot of other meds as well. I like the advice about the sunscreen and have found the neutrogena 100spf to be almost impossible to detect on my skin and the price is reasonable. As far as hair loss goes, I will have to try biotin. Does anyone have a dosage recommendation? I do not absorb many vitamins and such well if at all. I have to get thiamine & iron infused and B12 injections as well as my Benlysta infusions. It makes life kinda crazy! My family is an insane example of an autoimmune cluster. I would be happy to elaborate if anyone is interested! Thanks again for allowing me to jump in here!

@jerrynord I also contracted skin cancer but at about 8 months post transplant. It was a lesion on my upper arm. I too had it surgically removed (yet another scar). I was being careful though. Sunscreen and stayed in the shade.

@donnabalive, Welcome you to Mayo Connect. It is a joy to hear from you and that you are a transplant recipient. Congratulations on 4 years with your organ. Would you tell us a little about yourself? What organ did you receive?

@jerrynord You really learned the hard way that using sunscreen is imperative for us post-transplant patients on immunosuppressants. I really hate the feel of sunscreen on my skin so I just try to avoid the sun whenever possible, but do use sunscreen if I cannot avoid it. I'm glad you are now using sunscreen.
People often forget about their hands, but they are in the sun very frequently and there are hand creams with SPFs specifically for that reason. When we are driving our hands are in the sun, and in these days of frequent handwashing, it's more important than ever to reapply a hand cream with an SPF of at least 30. Supergoop and Eucerin both make good hand creams with SPFs of 40 and 30 respectively, and they do not have a feminine scent to them.

@kidsmomof9 I notice you have been on Connect for a while but I do not recall welcoming you before. If I didn't, please let me now.
I'm glad you are finding this discussion helpful. Do you think your incontinence is from childbirth or from your medications? Did you have it prior to being prescribed Cellcept and prednisone? That's one of the things I am trying to figure out, if the medications are contributing to my incontinence, or if it is just due to other factors.
JK