Transplant anti-rejection medications. What's your advice?
Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?
Interested in more discussions like this? Go to the Transplants Support Group.
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
Forgive the intrusion: not a transplant patient but taking Cellcept 1000mg 2x day +prednisone bursts as needed for lupus flares. Dealing with hair loss and nocturnal incontinence and some stress incontinence during the day (although I am admittedly 56 and have given birth to 9 kids). Just wanted to let you ladies know that your discussions were very helpful to me without you even knowing!
@jerrynord, Thank you Jerry, for bringing up this topic!
I know that you intended to say that you put on sunscreen.😉 Congratulations for early identification and treatment for the skin cancer.
As transplant patients, we need to be especially careful when it comes to sun protection because we are more susceptible to skin cancer.
Big rimmed hats, long sleeves, and sunscreen are among the the favorite ideas being discussed in Transplants>Anyone have tips on sun protection?
https://connect.mayoclinic.org/discussion/anyone-have-tips-on-sun-protection/
***With warmer weather coming to much of the country, I invite everyone to check out this discussion. And to share your tips there so others can benefit.
I was told to stay out of the sun as much as possible after my transplant and put on tacrolimus. Hard to do when you like to fish and disobey the suggestion. I year post transplant I developed skin cancer on my cheek that was surgically removed. Nothing in the 10 years after that but now wear a big brimmed hat, long sleeves and >30 sunblock. No other noticable effects.