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

Also stay healthy and eat right. Exercise very important

I can only speak about my LIVER TX.-2010.. These rejection meds are very powerfull! What I did was I constantly hounded my transplant dr to get me off Cyclpsorine as is it was ruining my kidneys among many skin cancers . Depending on how long your post transplant and how good a match you were I would talk to my transplant team and ask them to start to slowly ween off these meds to a level where you dont reject but your not gonna ruin the rest of your body or get cancer. Right now after 10 yrs Im only on cellcept 500mg-day 250mg-nite. For those of you who take Statins --these meds like cyclosporine interact with statins and cause renal problems.That was another reason they finally bowed their heads and took me off cyclosporine. Remember most Drs only go by PROTOCOL!!

@jodeej I worry too because they are in your system for a long time, but Reclast seems to be the medication of choice. I want to speak to my endocrinologist about Tymlos because that builds bones, vs the others that just maintain. Your gains were probably from the other things you are doing along with the medications. Being on prednisone is what has caused my osteoporosis probably. That's what my endocrinologist felt.
JK

I know there are some meds that are intravenous, but I would worry that those would cause a worse reaction.

@jodeej Thanks. After writing my previous post, I remember that Fosomax is oral. I don't think they would want me to take the oral ones because I have a history of Barrett's Esophagus. It is currently in remission but they don't say it is cured.

That's great that your bones have improved. I know I need to get on something but frankly, with the side-effects, I am sort of leery. I am one of those people who have side-effects frequently. When a number of years ago I was put on lisinopril for high blood pressure I had no idea that cough was a side effect. I went to my then PCP and she immediately knew it was from lisinopril and changed me to a different BP medication. More recently I was put on cholesterol medication. I had no idea that it could cause muscle aches but I happened to mention to a friend who is very medically savvy that my legs were always hurting. She immediately asked if I was on cholesterol medication! So I am off that for now too. I have trouble with a number of other medications also, I just seem to be one of those people who is sensitive to many medications. Of course I had to come off tacrolimus also because of a reaction. 😟
JK

Kind of off topic but I would suggest getting a 7 day 4 time a day pill organizer that you can remove each day, it makes it a lot easier to put your pills in your pocket.

@jeanene
Congrats on your successful surgery!!! I'm so glad you made it through everything ok, that's a big surgery. I met Scott the first patient to have the combo surgery like you did, I also met his surgeon who was so compassionate and brilliant. Isn't it great that they can do both procedures now. I'm sorry you've experienced hair loss after surgery, what do the docs say about it?

@jeanene several of us have had the same problem. I was advised to take Biotin and I did for a few months. My hair is now thicker and softer than it ever was before.

I have a misspelled word that should read Prolia.

That’s encouraging!