When do immunosuppressants finally stabilize?

[Roxy]

OK, I'm curious how long it took people for their immunosuppressants to stabilize? I know I'm only four months post transplant, but the transplant team told me it should start stabilizing. It's not happening. My cyclosporin level in my blood is suppose to be 180 and if it's not we either raise the medication or lower it to get the level going in the right direction. So with me, I will have three weeks where we are constantly increasing the dosage of pills, yet the level of cyclo. in my blood keeps going lower (like right now it's around 84). Then, after a few weeks of whatever dose and my cyclo. finally being around the correct level in my blood, it will jump to around 300 in my blood, and then take a few weeks to come down after reducing it. It's just constantly up and down. Now I'm completely confused. I don't have any major changes in my diet. I know changes in my activity level will affect how quickly the medication is metabolized, but I've only had minor changes in both. The part that worries me, is that when it goes to the extreme highs, I worry about cyclosporin toxicity, and when it goes extremely low of course I worry bout rejection. I was wondering if anybody on here had any ideas or experienced anything similar???

[angela515]

I am not on cyclosprorin this time around but the meds I am on are stabalized already, and have been for months. I am on Prograf and Rapamune.

I was on cyclosporin for my first transplant and I don't remember having that problem, mine was pretty steady after the first few months.

Hope they figure it out.

[Jill D.]

I am nine months post-transplant, and it's only been in the last two months that I really feel things are at an even keel - I feel really good. I'm on prednisone, cellcept and prograf - could they switch you?

[Romona]

 Are you taking your pills the same way everyday? Empty stomache or full? This can affect levels. I hope you stabilize soon.

[stauffenberg]

Is it possible that you have gastroparesis, which causes slow and unpredictable rates of gastric emptying, so your cyclosporine levels will always be irregular?  Many patients who have suffered nerve damage from spending a long time on dialysis have this problem and they tend not to show any peak in their cyclosporine levels after transplant.

[Roxy]

Thank you all for your replies.

Jill D. - I'm on a non steroid protocol with just Cyclosporin and Cellcept and I know there is probably something else they could have me on but I don't think they're ever really willing to switch meds until I'm a lot further along...guess I'll just have to wait and see * twiddling thumbs*

Romona- Yes, I always have to eat something before I take my pills and the cyclosporin level is taken after fasting and twelve hours after my previous dose so they test is always taken on an empty stomach and with no additional pills in my system or anything.

Stauffenberg- Luckily I wasn't on dialysis for very long, but that is good information to know regardless.

Thank you all for your suggestions, I just did more labs today so hopefully it will get somewhere back to normal.

[paddbear0000]

Is it possible that you have gastroparesis, which causes slow and unpredictable rates of gastric emptying, so your cyclosporine levels will always be irregular?  Many patients who have suffered nerve damage from spending a long time on dialysis have this problem and they tend not to show any peak in their cyclosporine levels after transplant.

Gastroparesis is also a common complication for diabetics. I've got that problem. It reeks havoc with my blood sugars!

[Romona]

Roxy, i was trying to think when I finally stablized. I think it took awhile. I remember having to get a new script faxed because my insurance wouldn't cover my prograf because it had gotten low and my dose was increased, so I refilled before I was supposed to. So maybe something similiar is happening to you and you just need a little more time.

[keefer51]

When i had my transplant it didn't take long for the cyclo. to stabilize. After a couple years however they changed it to celcept. I think if i remember correctly it took around three months.