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Immunosuppression: Watching For and Managing Side Effects Jul 1, 2024 | By Kristin Eggebraaten (@keggebraaten)
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@athenalee

Well, I had terrible hallucinations and just slept for about two weeks after surgery until they felt they could take me off prednisone. So, not pleasant. But, I’m definitely glad I’m not on it. And, it certainly hasn’t effected my ALT or ASP. ALP is high, due to PBC, but even it has gone down. Have you found research on transplant recipients and prednisone vs. those not on it? Perhaps there’s a natural way to reduce swelling if you lower or eliminate prednisone? I’m a liver transplant recipient, so might make a difference too.

I’m with you…I’m so glad I’ve been able to cut my meds in half in a year. I hope to reduce them more. That’s great your Mycophenolate dosage is so low. I have hand tremors, which seem to relate to neuropathy I have due to an autoimmune disease. But, my liver doctor agreed to see how I’d due lowering Tac, to see if it might be causing or worsening the tremors. I’m now at 3 mg am/pm. The tremors are better, but I’ve also been taking supplements and eating well. So, who knows, but I’ll take it!

The attached article is similar to yours, putting the trough level range at 4.6–10.2 ng/mL. You only take 1 mg, am/pm of Tac? Do they make a lower dose?

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Replies to "Well, I had terrible hallucinations and just slept for about two weeks after surgery until they..."
stan1357 | @stan1357 | Sep 29, 2021

Its said that if you are on pred. You can get mood swings and frustration and anger. Its in the literature but could also be psychological effect of having the disease and treatment which is not so pleasant. I've not heard of hallucinations though. You are second liver tx patient on this forum who takes no pred and has no rejection. I'm not sure there would be any studies as it might be considered dangerous or unethical. Immunosuppressive is advised 3 drugs, steroid -pred, calibration -tac and MMF, this is what they give here for kidney tx but other substitutes like azathioprine, baxiliximab.
The problem with swelling in kidney is steroids can cause water retention but also a sign of kidney failure or rejection if post transplant. I found exercise walking helps the circulation especially if I sit by the computer my feet swell up which doesn't help when I am on blood pressure tabs.
I take 1mg twice a day morning and evening without food. You are right to watch the blood levels of your tac one of the reasons I reduced was because I started getting tinnitus which is a side effect and as trough level was high I could see no reason not to reduce. As it happened going to lower does made no difference to my levels which are about the same 8.7my/no but I haven't reduced further even though my tinnitus seemed to get better. On line there are about 136 drugs that can cause tinnitus and many potential causes including advice about supplements.

Its a bit of a problem mixing up causation and treatment. If you have tremors did you have it before MMF? Or less intensely?
Anyway good luck with it all. Nice to talk to you, Can you pm on this site?

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