Cyclosporine and nausea

[Taralv]

Hi, I'm new to the forums. I am a 41 year old women, and I received ATG/cyclosporine about 6 weeks ago. I'm currently on 200mg of cyclosporine twice daily, and I have really terrible nausea. They have given me zofran, but it doesn't help much. Also, they monitoring my cyclosporine levels and say that they are okay. Is this normal? Not just mild nausea, but dry heaving and not able to eat or drink? Any feedback would really help. Thanks!

Tara

[Taralv]

Any experience at all? I have had an encouraging response to the ATG, and I want to continue to recover but I just can't survive if I can't eat or drink! Did anyone switch to prograf, and if so, did that help?

[Hopeful]

Hi Taralv,

I have never heard of this side effect from cyclosporine. If it is happening every time that you take the drug, perhaps you are on too high a dosage or are having an allergic reaction???

It took about 4-6 weeks after ATG for my cyclosporine level to build up to a pretty toxic level while I was taking the higher dosage. Make sure that they are still checking your 12 hour trough level and that it is below 400.

Sorry that I can't be of more help.

[Taralv]

Thank you for the feedback. My doctor has me seeing a GI doctor because they don't think it's the cyclosporine. They have been monitoring the levels in my blood and they are all within the target range. Hopefully they find something because this is really hard to live with!

[Taralv]

Hopeful, can I ask what dosage of cyclosporine you are on? I asked to have my dosage lowered, but they want to keep me at 400 mg daily. I weigh 122 lbs and based on a 5-6 mg per kg of body weight scale, I think I should be closer to 300 mg daily. Anyway, I am just desperate to feel better and be able to eat. I am miserable. Sorry to keep asking the same question.

[SLB]

My story is a bit different so am on cyclosporine after transplant. I know if I take it and don't force myself to eat then I get nauseous. After transplant was particularly bad because you already feel awful and the tablets are huge and they smell so bad!! I gag half the time even when I feel ok. My cyclosporine levels were always on the low side and my kidneys & liver never liked the high doses so much. I was put on steroids shortly after transplant & I went from forcing myself to eat, to forcing myself to stop eating..

Sorry I am not more helpful but good luck finding out what is going on..

[Hopeful]

Hi Tara,

When cyclosporine was working for me, I was at 5.5 mg/kg/day. Currently, I am at a dosage that is below therapeutic levels ( 2 mg/kg/day), and my platelets are just slowly decreasing.

Your dosage does seem a little on the high level at 7 mg/kg/day. I know some doctors like to start at a high level to build up the cyclosporine level in your blood.

You could always have the discussion with your doctor about lowering your dosage to 300 mg/day for a few weeks just to see if it makes a difference in your nausea level. I use to have these discussion/trials all the time when I was at higher dosages

I think following up with a GI doctor is wise advice. I know it is overwhelming to have another yet doctor's appointments and procedure, but I am recently learning that there can be some GI conditions that cause hematologic disorders as well as some hematologic conditions/treatments that may cause autoimmune GI disorders. An endoscopy/biopsy is a quick, relatively painless, procedure that can give you insight into other potential causes of your nausea.

Hope they can find the cause!

[Taralv]

Thank you both for your help. I am also finding out that GI issues can be linked to blood disorders, or anything autoimmune really. In my case it looks like an h. Pylori infection, which makes sense with my history. It also explains the misery I experienced when pregnant. Now I am trying to figure out how to deal with it while taking cyclosporine. And I have spoken to my doctor about lowering the dosage slightly - to 325 mg daily - so we'll see. Thanks again for your help.