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

Kisses...kisses...to u. It shows what a strong person u r!!!congratulations for that. We all know the hospitals we r affiliated with saved our lives. But for sure never told us the bumpy road we will go down later. Accept the good with the bad .g I d bless us all. We r a group that has been thru a lot
And we r still standing....we r amazing.....

I still take .5 mg of Tacrolimus 2x a day. Also 5mg of prednisone and 500mg of cellcept 2x a day. I have never been able to go off of all my medications. Hoping for the best for you.

Wow 38 years!!! Amazing.
I was getting g tested with CT N MRI every 3-4 months. In October I will be 5 years since my transplant..so I now have to get tested 6 months then 1 year. .I am going to a kidney dr. Keep looking at my GFR and creatinine levels...oh boy as Rosanna Danna use to say ",it's always something!!!!!.feel good. Just don't want to run out of steam!!!! Still o. My sirolimus pills two a day ..
Nx thing taking with no meds at all . Is prayers

The only problem I have had with my liver transplant is my kidneys. They are still hanging on so hoping for the best. I am 38 years post transplant.

Hi. Jackie here. My liver transplant was 10/20/20
Went thru the mill with medication.i too dropped tacrolimus I am on sirolimus 3 mg a day, just in morning my level is good I had to watch my creatine levels
But as today now I have to worry about my GFR numbers for the kidneys
I need to see a kidney Dr my last number was 43.....anyone else??? What the f....now I have to do research. I am not diabetic and b/p is under control it is ok.when I came home from my surgery I was in hospital 2 months my hair also acted up but I started taking biotin and it helped. I don't look like Farrah Faycett but it is ok not bad ..well any info someone can add always appreciate. Kisses to all

I"m a liver transplant patient 15 years out. 3 years ago my transplant doctors in NY said I could try no anti rejection meds and to this day I have not rejected and no longer have side effects of meds. Slowly weaned down. I am lucky because I was a good match." I don't recommend trying this without your Drs. approval" . The liver is the largest organ in the body and has the best chance of not rejecting after at least 10 yrs on immunosuppressive drugs!

I have been on 5mg, sometimes up to 20mg, since I was 16 years old. I understand your troubles. I have no side effect from 5 mg. I am a liver transplant patient.

@estrada53 I too am on 5 mg of prednisone. It has not caused any problems that I was aware of except for the bruising on my arms, until I discovered that it had caused my osteoporosis.
The bruising is called purpura and it can be helped by applying a topical (approved by my transplant team). The transplant dermatologist at Mass General prescribed it for me. It is often used for acne too! It toughens your skin a bit to prevent the bruising. There is also an OTC cream made especially for purpura called DerMend. That helps too.
Did your weight gain happen immediately? I am really struggling with my weight currently and have been since last summer, which would have been almost 3 years post-transplant. I suspect I will always have to take prednisone because my blood numbers (platelets especially) run low and prednisone helps with that.
If you seek the prescription cream, be aware that it is expensive and not covered by insurance, but if you use the app GoodRx you can find it priced fairly reasonably. I haven't used it for a while, I primarily didn't want those bruises limiting me in getting a dress for my son's wedding last August.
JK

It’s been 1yr and almost 2
months since my transplant. I also had a right sided stroke and my pituitary gland disappeared post transplant. The meds are crazy still!! Anti rejection, anti seizure, anti high blood sugar, and so one and so one. From stage 4 diagnosis to transplant was 7yrs 5 months. Which was a battle in itself with 50 EGD’s and 9 paracentesis , and the crazy bilirubin encephalitis trips were too numerous to count. I thank my family for seeing me through this. The entire medical professional staff for their hands on care. But mostly I thank my Lord and Savior for blessing me once again with life!

I"m a liver transplant patient 15 years out. 3 years ago my transplant doctors in NY said I could try no anti rejection meds and to this day I have not rejected and no longer have side effects of meds. Slowly weaned down. I am lucky because I was a good match." I don't recommend trying this without your Drs. approval" . The liver is the largest organ in the body and has the best chance of not rejecting after at least 10 yrs on immunosuppressive drugs!