It's been a litle over 19 months since my liver transplant. You didn't say when you had your transplant, but some of the symptoms do go away. I am on cyclosporin instead of prograf. In the beginning, when I was still on prednisone, I had more symptoms. I was eased off of that pretty quickly and also was finally taken off cellcept.
I lost weight and muscle mass, and it's not coming back much at all. I'm very thin except for my abdomen, which is bloated at times. Walk when you can eat the right things.
I'd like to know what kind of transplant you had. God bless and keep you.

They have switched my meds several times. I'm 5 years out of transplant of the heart. My experience is that once I changed I was good for awhile then slowly back to the "I dont feel well "thing. Then we start all over again

I had an issue with Neoral post transplant and then was switched to Prograf. I love my Prograf. Just remember to report any fevers to your transplant team. I have had my transplant for 15.5 yeras and will be needing another kidney soon. I am dreading the begining again because it took me 1 year to feel normal post transplant. Wishing you the best!

It is all about finding the right combination of medications. I had my kidney for 11 years before it went kaput. In that time I had my meds changed a bit. Sometimes I would have to go on a medication to counter act a side effect. Talk to your doctors. I could only do 500mg of cellcept twice a day or it made me ill. Unfortunately since everyone is different there is no pill that will work the same for everyone. It will get better, your body will adjust to the medication but again talk to your doctors. They might need to tweek your meds a bit.

I had a liver transplant 2 years ago and I would say it took more than a year untill i started feeling "more" normal. any transplant is a big shock to your body. the med's can be a bitch too. talk to your doc. I think mine got tiered hearing me bitch, but tell them everything. mine caught a fungus infection because of my complaining. my prayers are with you. Terry

I have had my new kidney for 11 months and I have had issues with my prograf my trans center is so busy they had been over looking the levels and my neuro doc caught the overdose and i am feeling better but it has been a battle. My best thought is find out your levels and see where the docs want your levels to be and kinda watch your lab reports to make sure your staying in range also my doc has put me on a stomach med to help because they will upset your stomach....I pray for things to get better

Hi TexasMary!

Could you tell us how often do you get tested for your FK levels?

Also, do you get your blood tests at the transplant center only?

The reason I ask this is because you can avoid the oversight in the future by getting the blood tests done @ more than one location...

I personally go to 4 or 5 different locations sometimes to get my blood tests done so that I do not miss the frequency level required by my transplant team as well as my PCP (Primary Care Physician). So this is just a suggestion if you haven't thought about this already.

I totally agree with your best thoughts also because one must be proactive with their healthcare in order to avoid this as well as other oversights which more common than we all would like to think.

Respectfully,
Henry

I wish I had better advise. I had my transplane when I was3 and was on cyclosporine for about 20 year and have gone off it about 2-3 years ago. I don't recall having any side effects that I noticed when I was on the medication.

I am on prograf now and when I first began this medication I did not experience the systoms that you have listed. I would say to talk to your transplant doctors and let them know what you are experiencing so that they can make a note of it and keep a close eye on you. I pray that these side effects stops and you feel better.

I just joined this blog & I just wanted to share that I had a HORRENDOUS time for 3.5 years after my kidney transplant. I am ultra sensitive to medications. At first I was on high doses of medications - high prednisone - etc. when they lowered my dose, I crashed & felt exhausted because I had burned out on the high of prednisone. I was on prograde & although they gave me 2 Diazepham & 2 restorable & another sleeping drug, my body would NOT sleep! I was getting hysterical after a year because this is how they torture people - they deprive them of sleep. They switched me to cyclosporine & I had SEVERE migraines & headaches & severe sinus pain & I couldn't keep my eyes awake - it slowed me down so bad. I desperately wanted help & went to a kidney transplant support group & no one would mention anything about the side effects of the drugs. I live in Hawaii & there was no transplant center here. I finally found a doctor that would let me get off cyclosporine - I developed major depression without sleep & was crying all the time. I also had SEVERE diareaha for the first 1.5 years & had to go around 10 times a day or more & had many accidents. I was getting mal nourished. I was determined to keep working. It kept me sane. To be honest, I feel like I kept my life as a recipient, but felt like I lost "myself" - because of what the drugs did to my mind & emotions. I work extremely hard - harder than most to make the best of things & am now 11.5 years out. Not everyone has had as many complications as I have, - my sister had a transplant & never went on prednisone & has done so much better. I think the high doses of prednisone did me in.
I hope I am helping in some small way - possibly a validation of what you are feeling - but I hope things have improved for you. Feel free to write & ask any questions anytime! Aloha. Ps - I got my transplant at 52 years old.

I know I'm late to this thread but I wanted to throw this out here in case anyone in the future comes looking for information.

I was in the same boat but under a different combination of medications. The transplant doctor wanted to keep the medication dosages higher after surgery and then reduce them later to reduce a chance of rejection. I could deal with that but after that time was up...

I knew going in that I had a history of being sensitive to medications of almost all kinds and their side effects. I warned my doctors. It's just the card that life dealt me. These medications were no exception. I experienced rare/unlikely side effects (unlucky me!) that were hard for my doctors to accept because it usually doesn't happen to most patients.

It was really, really, really hard to convince my doctors to either adjust my dosages or switch medications. My labs looked fine but I wasn't fine. I was suffering with up to 27 documented side effects and miserable begging to change but they didn't want to. They wouldn't tell me why. I had to first rule out that there was nothing underlying that was causing my distress before they would even look at my medication levels. And I did. I did just about every test under the sun and I'm not surprised that they didn't find any other culprit. When they did reduce dosage or even switch medication classes, there were changes towards the positive but not enough to restore a reasonable amount of quality of life. I'm coming up on just under 2 years since my transplant and I"m still really suffering but too stubborn to give up.

I'm on my 4th time switching post transplant doctors. Why so many? I've learned that every doctor has a comfort level based on their experience and it drives their range of willingness of what they will do for you and their reluctance. Maybe I'm willing to take a little risk to gain back some mobility and quality of life but maybe they aren't willing to take that risk with me. I finally ended up finding a researcher that is the most experience with these medications and making adjustments. I"m hoping this is what finally gets me back on track.

If you have a hard time understanding what the risks are of each medication and your doctor isn't discussing it with you, I found that youtube has nephrology conference sessions available for viewing for free. This particular video helped me to better understand where doctors were coming from: http://youtu.be/Iwf6e_u9NCM

In hindsight, the warning sign that my doctor was no longer in their comfort zone with adjusting medication/managing side effects, is when they started referring me back to my primary care provider to manage my care. I thought that people were playing hot potato but time and space has let me see what was really going on.

I wanted to put this out there in case someone else is experiencing this. It's definitely challenged my sanity trying to figure all of this out... but hopefully I can save someone this struggle by better understanding your options as a patient and why a doctor may not be helping.

There's hope. Don't give up. There are different medication combinations that you can try once you've passed the period of time where you know that your transplant is stable.

Straight after my kidney transplant I was feeling good and happy. Then all of a sudden, when I had to go back to school, I began noticing all of the side effects.

When I finally got to go home I did get night sweats which did go away.

Prednisolone has given me moon face - when your face becomes round - which is very obvious for me. Also excessive eating which has caused me to gain weight as before transplant I was constantly losing weight.

Prograf has given me noticeable hand tremors.

Side effects vary between people and can take time to occur. Some people are lucky enough to get none at all! But sadly yes there will be side effects but that is nothing to worry about!

Side effects do go away but some can stay and eventually you will get used to it and it will just become a part of you.

What you should think about is how strong you are to go through such a life changing experience such as a transplant. There will be ups and downs in everyones experiences but overall... YOU ARE AMAZING!!

If you can go through an ORGAN TRANSPLANT you can handle anything.

Goodluck and best wishes for your new organ!!!!