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Old Thu Aug 19, 2010, 10:23 AM
paulaespada paulaespada is offline
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Exclamation What is cyclosporine dosis?

Hello!



In order to help my husband I need to know what is cyclosporine dosis.

I explain:

2 years ago he had ATG and 400mg cyclosporine (200mg/twice/day).
Then it was decreased until last January when it stopped.

My husband relapsed and this June he had ATG again and cyclosporine started with 300 mg (150 mg/twice/day).

Every week cyclosporine is measured in blood to determine adjustments - have you hear about it? I tried to find something about it and I can't find.

With these "measurements and adjustments" my husband cyclosporine dosis has been decreasing, from 300mg/day to 260, 200 and today to 160.

I'm afraid that this decreasing proccess will lead to other relapse.

So, what is cyclosporine usual dosis? I need solid bases to talk with my husband doctor.

Thanks for all information you can give me.
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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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Old Thu Aug 19, 2010, 04:14 PM
Hopeful Hopeful is offline
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Hi Paula,

There are no real standards for Cyclosporine and AA patients. What are used as guidelines are the ranges for kidney transplant patients, which is a trough level between 50-400 ng/ml.

Not all doctors will monitor Cyclosporine levels regularly, as it is metabolized differently in people. I've found that doctors who do monitor levels tend to want the trough to be between 100-200 ng/ml.

A trough level is measured between 10-12 hours from that last time Cyclosporine was taken (or immediately *before* it is time for the next dose). The idea is that your measuring the lowest level in the patient's body. You should ask the doctor for your husband's latest trough level.

Cyclosporine takes a long time to build up in the body and a long time to leave (~3 months either way). That is why people who relapse generally do so after 3 months or so.

Dosage is given by the weight of the patient. My doctor states that anything more than 5 mg/kg/day is toxic without any additional benefit. However, initially with the ATG treatment, many protocols will start with a much higher dose. Maybe in the hope of building up the levels more quickly??? This dose is later reduced to the safer levels.

I would be surprised if your husband's doctor was starting the taper already. Maybe they are trying to minimize toxicity or kidney stress as seen by high trough levels or creatinine numbers?? Get these numbers from the doctor to track them yourself, along with the BUN.

I am currently taking 4 mg/kg/day but only have a trough level of 50. At one time, I was taking 3 times the dosage, which was just plain crazy in my opinion!

Lisa V., I am curious what your husband's trough levels are with his low dosage. It would be nice to be on a lower dosage some day!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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Old Thu Aug 19, 2010, 06:25 PM
paulaespada paulaespada is offline
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What we were told today was that trough level was too high. No values were told in spite that some days ago we were told by other doctor that it achieved almost 1000. I will ask it from now on during weekly consultations.

His doctor since Jorge relapse has told that this time tapping will be much slower, even keeping a low dosis for years.

That's why I was so surprised.

I hope this 160 mg/day can have therapeutic action.
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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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Old Thu Aug 19, 2010, 07:52 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by paulaespada View Post
His doctor since Jorge relapse has told that this time tapping will be much slower, even keeping a low dosis for years.
That's typical, with the cyclosporine dose reduced verrrrrrrrry gradually. I'm glad to hear it.
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Old Thu Aug 19, 2010, 08:51 PM
paulaespada paulaespada is offline
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I've been studying the concept "trough" and I think I understand better what Jorge's doctor is doing.

I believe he'll be very careful this time tapping cyclosporine.

I've been putting all Jorge's CBC values and therapeutic measures in statistical database - SPSS.
Me and my son will work on it, doing some graphs and compute, so we might find something interresting. One thing I found immediatly - when cyclosporine dose was decreased from 120mg to 50 mg. Platelets started to drop. When cyclo was off in January this year until April, it was what we know already: a relapse.

When I have graphs I'll share them here.

Thank you for your ongoing help!
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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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Old Fri Aug 20, 2010, 06:31 AM
Lisa V Lisa V is offline
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Originally Posted by Hopeful View Post
Lisa V., I am curious what your husband's trough levels are with his low dosage. It would be nice to be on a lower dosage some day!
They don't test his CSA levels that often, Hopeful. Since he's been pretty stable (and since we have lousy insurance and have to pay extra for each additional test), it seems more important to just keep an eye on his creatinine, but every so often they'll run a CSA test just to see where he's at. Since being on 175 mg/day, his trough level readings have ranged from 49 to 83 (average 65). The only two valid trough readings when he was on 200 mg/day were 114 and 145 (he accidentally got one just a few hours after taking his meds, since he didn't know they were going to do a CSA that day, and that was 188). So it seems that just a 25 mg reduction in dose actually cut his blood level in half.

We were kind of alarmed to find out that they weren't testing his blood levels at all in the beginning. It was only after I read some postings about it (on Aplastic Central) and started asking questions that we got the test. By that time, he had already reduced his dosage from 900 mg/day to 500 and been on that for a month, and he still came back with a trough reading of 885! Can you imagine what it must have been at 900 mg? No wonder he felt like death warmed over! As soon as we got that reading they told him to reduce it to 200 mg. Really, I hate to think what might have happened if I had not been comparing notes with other patients, but I'm sure glad I did!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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