ATG, one week out...Yuck! Liver function question.

[Ryan Jay]

Hi everyone,

Well, it's been one week since my ATG treatment last week, and the procedure went very well. No serum sickness whatsoever and I was out of the hospital in 5 days.

I've just felt really weak the past couple of days. I crash on the couch at 9 AM after breakfast and wake up around 1PM in a complete fog with no ability to concentrate. Evenings are a little better, but I just feel really weird. I guess the stock question is: Is this normal?

My doctor also really whacked me with high-dose cyclosporin at the outset and has cut me off of it until Monday because my liver wasn't tolerating it. Has anyone else had liver issues with cyclosporin?

I just feel like my body is so beaten down right now.

[Susan L]

Hi - I remember the liver levels going very high after taking the cyclosporin for awhile. That is something they watch for. The tiredness and fog you are feeling is normal course. Sounds like you are doing good with no serum sickness. Are you on Prednisone? I remember taking the prednisone for awhile after discharge. Get all the rest you need, dont worry about that. Do you see the doctor soon, ask about the prednisone. Take care.

[Ryan Jay]

Yes,

I have been on steroids since the start. I just started the taper yesterday and I should be off of them by the first week of September. They make me feel so bizarre after I take them.

They're testing me on Monday at the hospital for my liver levels and cyclosporin trough...probably some sort of transfusion too.

Thanks for responding.

[Laura]

Not sure on the CSA and liver enzymes...but they could try switching to Prograf if they do think you can't tolerate CSA. I would be careful about cutting it cold turkery as this could cause the ATG to not work as efficiently.

Laura

[Ryan Jay]

The doctor started me at 1400 mg of cyclo. He gave me the weekend off and will reset my dosage on Monday after they re-check all of the levels. He told me that three days off after two weeks won't make that much of a difference. So, I think it was just a high dose to begin with.

[Lisa V]

Ryan, 1400 mg is really REALLY high! I'm sure you'll feel better and your liver and kidneys will function better if they lower the dose.

[Lbrown]

20 yrs ago I had to quit cyclosporine because of liver problems. I tolerated it ok in 2009 but had side effects. I was on 450mg a day. 1400mg sounds very high.

You are lucky to not get any serum sickness!

Deb

[Ryan Jay]

Looks like my bilirubin levels have come back down to normal. The doctor has reset the the cyclosporin to 200 mg twice daily and wants to do a trough check Thursday.

No serum sickness, but MAN! I still get that "ick" feeling at times.

Everything else went well. My hemoglobin held its ground for the entire week at 8.7. Over the last month and a half, I would lose at least an average of 0.1 to 0.2 per day after a transfusion.

My WBC is at 2.3, up from 0.5 when I was released last week, with an ANC of 800. Should I take the mask off in public places? I was taken off the anti-fungals today too.

My platelets still have a ways to go. Seems like these can be stubborn for a lot of us.

Well, thanks for your feedback guys.

[paulaespada]

What you're feeling is the same my husband does - 7 weeks after ATG he is start to feel a little better.
But indeed your cyclosporine dosis was too high. My husband never took more than 300 mg. But each person is different.

Your liver function is to be monitorized but it will be much better now.

Keep us posted!

Wishing you the best. This is not an easy road, but you'll achieve your goal of a fulfilling and meaningful life.