2 Weeks Post Op - Trouble Sleeping

[danielleblock]

Hi all! I received my transplant on 7/29/2019. It is such an amazing gift! Everything with the kidney is looking great. However, I am experiencing an unpleasant side effect. Last Friday night and last night I have had trouble falling asleep. In fact, last night I did not fall asleep at all. I am thinking this could be a result of the new medications. I am exhausted and feel tired enough to sleep, but my body seems on edge. I was on 5 mg of prednisone, which was stopped yesterday. I was on 9 mg in AM and 8mg in PM for Prograf, but yesterday that was reduced to 6mg twice a day. Myfortic is 540mg twice a day.

Did anyone else have this issue? Will it go away as medications stabilize?

Thanks!

Danielle

[JoanC645]

Hi Danielle, Yes, I have had this and I am 6 months post transplant. I believe it is a side effect of the prednisone and, since you have stopped this med, it should resolve itself soon. I hope so!

[danielleblock in reply to JoanC645]

Thank you, Jackie! How long did it take to resolve for you? I also spoke to my coordinator this morning who said that my Prograf trough was 16 on Monday, so that could also be a factor. If your trough is greater than 10 you can see these side effects. Praying it goes away soon!

[JoanC645 in reply to danielleblock]

You are welcome Danielle. I still have this issue - it is 12.40 in the morning now in the Uk, I am wide awake and I did not sleep at all last night. But I am certain that it is the prednisone as this is my second transplant. From the UK NHS website: "Take prednisolone once a day in the morning so it doesn't keep you awake. The most common side effects of prednisolone are insomnia, weight gain, indigestion and sweating a lot." So this issue should resolve for you pretty quickly as I am sure that the half life of prednisone is quite short, so it should be out of your system very soon. I do hope so! Take care, Jackie.

[Alimesoda234]

Takes awhile I needed ambien

Good now

Horrible not to sleep

I would insist on meds

Good luck

[WYOAnne NKF Ambassador]

Oh ya, I hate to tell you this, but it is due to your medications. I am surprised they stopped your prednisone, but that is usually the cause of not sleeping. When I was 5 years out from my transplant, they stopped my prednisone. It will get better as your body adjusts to your medications. Doctors may even be able to reduce your Myfortic. However, I still have problems with sleep probably 2-3 nights out of 7. My nephrologist tells me it is still due to the immunosuppressants. I take Neoral 75mg twice a day and Myfortic 360mg twice daily. In October, I will be celebrating 20 years since my Gift of Life!

Make sure if it continues that you let your transplant team know. I was given ambien to use occasionally. Maybe it will improve for you since the prednisone was stopped.

Best of luck!

[JennieZ]

Hi! Congrats on your transplant. I had a lot of trouble sleeping for the first 6-8 mos as well. After 6 mos they cleared me to take Melotonin and that helped tremendously. Prior to that i was taking Restoril (a prescription sleep aid) but i didn't want to be on yet another med. I sleep great now (1 yr and 1 mo in). Best of luck!

[HughL]

Danielle - I don’t want to be discouraging, but it’s likely the Prograf. The nephrologist in my case didn’t want to deal with it since transplant worked so well. I am 5 years out and finally found a medication that helps me sleep without weird side effects. I went to my family doctor and she sent me to psychiatrist since insomnia leads to depression. Anyway I now take ziprasidone 40mg, temazepam 30mg & mirtazipine 45mg. After much experimentation. Hope you will fare much better, but that’s the stuff they don’t tell you!

[danielleblock in reply to HughL]

I am so glad to hear that you found a combination that is working for you! I am actually doing much better. I have been taking melatonin, and my sleep doctor believes I should be able to wean myself off of it in the next few months. His theory is that my insomnia was due to two issues: 1) prednisone 2) by the time my system was rid of the prednisone my mind had "learned" the habit. Overall feeling much better, and close to the point when they can reduce the Prograf even more.

Best wishes as you continue on this journey.

[HughL]

Great! I am happy for you.