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Old Tue Mar 15, 2011, 11:35 PM
Ryan Jay Ryan Jay is offline
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Location: Massachusetts
Posts: 106
Cyclosporine "see-saw" effect

Hey everyone,

I'm back to work now. Yay! I feel pretty good, but I have a question for you guys. It seems like my therapeutic level of cyclosporine is above the toxicity levels that are acceptable to my doctors.

For example:

Lab 1. (With 300 mgs of CSA daily)

Trough: 130
Billirubin: 1.8
Creatinine: 1.2

CBCs

HGB: 10.8
HCT: 31
PLT: 67
WBC: 3.3
ANCs: 1600

(This with all lines having dropped slightly after my labs two weeks prior)


Lab 2. Two weeks later (After my doctor boosted the CSA to 400 mgs daily)

Trough: 280
Billirubin: 2.3
Creatinine: 1.5

CBCs

HGB: 11.8
HCT: 34
PLT: 76
WBC: 3.8
ANCs: 2200

Anyway, we've gone back and forth splitting the difference between 300-400 mgs. and we are still teetertottering. Closer to 400, the counts go up, but the toxicity gets too high...closer to 300, the toxicity drops but the counts drift down, albeit slightly. I'm drinking water and everything, but has anyone else experienced this? I feel like I am tacking into the wind.
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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Old Wed Mar 16, 2011, 01:56 AM
Hopeful Hopeful is offline
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Hi Ryan,

My doctor ignores troughs (except for toxicity when I was on the higher dosages). I've read papers that also question whether too much emphasis is placed on trough measurements vs 2 hour readings.

Are you *sure* that your counts wouldn't have gone up at the lower dosage as well?

I've been told that trough levels will increase when the kidneys are struggling to clear it out, which may be why you are seeing such a big increase in troughs between the two dosages.

Just for a data point, my trough is typically 50-70.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Wed Mar 16, 2011, 09:46 AM
Ryan Jay Ryan Jay is offline
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Join Date: Aug 2010
Location: Massachusetts
Posts: 106
Hi,

It's been back and forth now a few times, and every increase in cyclosporine has lead to an increase in blood counts. I could be falling under the spell of "cum hoc ergo propter hoc," but I don't know.

Ryan
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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Old Wed Mar 16, 2011, 01:08 PM
Hopeful Hopeful is offline
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If not for google, I would have had no idea what you just said

You have your labs done quite frequently. I only have them done once a month, now that I'm stable-ish. I think my doctor suggested this so that I wouldn't panic as much about the little variations. We look at month-to-month trends only.

Perhaps you have had such a quick response because you were able to get your cyclosporine levels up to "therapeutic levels". It is tough on your kidneys though.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Wed Mar 16, 2011, 09:10 PM
Lisa V Lisa V is offline
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Location: Waimanalo, Hawaii
Posts: 401
Yes, Google is a wonderful thing, isn't it? I had to look it up too!

I'm with Hopeful. I'm not sure why your doctor felt the need to raise the dosage from 300 mg. When you consider how much fluctuation there can be from peak to trough levels, it's really hard to get an exact or consistant reading. Ken once accidentally did a peak reading, and it was 600 points above his average trough. In addition, there really isn't a well established target number for AA patients. Our lab uses the recommended level for kidney transplant patients, which is 56-266. That's quite a range, and your earlier readings would fall neatly into that, Ryan.

I think your suspicion that you may be seeing cause and effect where it doesn't necessarily exist is probably true. Now, if your counts rose and fell every time you increased or decreased the dosage, then I'd say you had a good reason to try to keep it as high as possible, but otherwise I'd try to find a median level where you can allow your counts to recover at their own pace while avoiding overtaxing your kidneys. Cyclo comes in 25 mg capsules too, so you can fine tune it rather than having to go with 300 or 400.

I once asked Ken's doctor how important it was to maintain a therapeutic CsA level. His answer: "Not important at all if you end up losing your kidneys." It helps to keep things in perspective.
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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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Old Thu Mar 17, 2011, 01:02 AM
triumphe64 triumphe64 is offline
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Location: Dallas, Texas
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My understanding is that a true trough would be 12 hours after your last dose. Make sure any variation in time is taken into account.
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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