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

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.

@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

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

@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 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!!

Also stay healthy and eat right. Exercise very important

Shortly after my kidney transplant in 1981 Cyclosporine was just starting to be used. I am on still on 5mg of prednisone and 125mg of immuran. I know the side affects of both drugs but 39 extra years of life and hoping for many morr out weighs there side affects.

My experience is not long term; I am only eight months out from my heart transplant. Still my only side effect has been indirect from tacrolimus which leeches key electrolytes from the body. So we adjust my tac balance with regularity and use a few supplements such as magnesium to balance my electrolytes. I have never been a sleeper as I was averaging abut 3.5 hours a night prior to surgery and I am up to a whopping five hours now. My philosophy of dealing with side effects is to note that I am alive to bitch about it.

Good morning, @scottij. Congratulations on your new heart transplant!
On Connect, we value and we welcome all transplant experiences. At 8 months you are already an 'expert by experience' and by sharing with others, we can support others from the patients' perspective. I got a liver and kidney transplant in 2009, at Mayo Rochester. I had a difficult pre-transplant journey with a fantastic recovery. I came to Connect when I wanted to meet other transplant recipients.

I appreciate, (but have used different language) and I agree that some side effects are tolerable when considering the benefit. I felt more discomfort/side effects during my early post transplant period, however as time passes, and I have reached a stable dosage level and my side affects are a non-issue for me. My Mayo team keeps close watch on potential internal side effects. It looks like your team is on top of your body's reaction, and are being proactive in making adjustments that are going to benefit you.

Scottj, As a mentor, and fellow recipient, I invite you to scroll thru the many discussions in the transplant group. Know that as a member, you are welcome anywhere, any time to lend a word of support to someone, ask a question, or simply drop in and say 'hi'. Here are two to get you started and where you can meet som other members(@glinda, @danab, @dennisprater, @estrada53, @chugly11) who have also received heart transplants.
https://connect.mayoclinic.org/discussion/heart-transplant-231a15/
https://connect.mayoclinic.org/discussion/heart-transplant-recovery/

@scottij Hi and Welcome to connect. Congratulations on your Heart Transplant. Sounds like things are going well. I too am a Heart Transplant receipiant and I also live in Arizona. We have a few things in common we both got our hearts rather quickly mine was 5 days and it put me into early retirement. My transplant was in Jan 2018 and i had a few bumps in the road but not Heart associated. I seem to get virus rather easily but we got that under control now. I would guess you had your transplant at Mayo Phoenix? So its great to have another Heart Transplant patient there are not as many of use here on connect as with other organs.
Have a Blessed Day
Dana