creatine levels

[rschem]

Hi everyone,
I have been DX 08/2008 ATG Setp.2008 TX free since Nov/2008. Ihave been on 350 mg. cyclosporne since atg ,but have been cut back to 300 mg./day . DRs are concerned about my creatine levels which have been climbing. Now at 186 apparently 300 is really high.Has anyone gone up to 300 levels creatine? If so what are the side efects?

[CDChilds]

Creatine is a waste product that is released through your kidneys. You natural release creatine from your muscels all the time. However, when you take a medication like cyclosporine your levels can become high. This can be a sign of kidney problems.

My son has had AA for 10 years now and sometimes his creatine level elevate along with his bun levels. We have been advised by his doctor to drink, drink, drink lots of water to try to flush out the kidneys.

[Hopeful]

Hi Rschem,

You should compare your current creatinine level to your baseline (ideally pre-ATG). The literature from the drug manufactures along with a number of research papers say that the creatinine rise should be kept below 30% of your baseline to prevent kidney damage.

I don't think you'd want to see your creatinine level get up to 300, as that could be a symptom of kidney failure!

I consulted with a nephrologist and was told to also have my urine checked every 6 months to look for protein - another sign that the kidneys are struggling.

If the signs point to kidney distress, I would discuss with my doctors either lowering cyclosporine dosage or switching to something else.

[Lisa V]

Rschem, I think your lab must write the numbers differently than ours. We see creatinine counts like 1.2, 1.3, 1.4 etc. Would your 186 be the same as our 1.8?

If so, it is cause for concern. Our hem/onc told us that anything over 1.2 is too high. He said that 1.4 is tolerable for a while, but it translates to roughly a loss of 25% of your normal kidney function. I can only imagine what 3.0/300 would mean! Not something you'd want to wait around and find out. Once your kidneys fail, that's it, you can't get them back (without a transplant).

Once or twice Ken's got up into the 1.6-1.8 range and the doc wanted to pull him off of cyclo altogether, but he managed to bring it back down by drinking LOTS of water, which has become a standard part of his daily regimen. It's a hassle, and it means a lot of bathroom visits, but water is cheap and non-toxic and it sure beats the alternatives. I'd recommend trying that first.

If that doesn't help, you may have to lower your cyclo dosage. Even a drop of 25 mg can make a big difference. 350 or even 300 mg/day seems a bit high to me. Ken's been on 175 mg/day for the last several years, and he weighs about 180 lbs. He may not be at the optimum therapeutic level, but since there doesn't really seem to be a consensus on what that level should be anyway, it's hard to know. It's apparently enough to keep him from relapsing and we've continued to see gradual improvements in his counts, so that's good enough for me.

[rschem]

Thanks form the replys. I would think 1.8 would be the same as our 180
I weigh 204 and have been drinking a lot of water.

[Lisa V]

I forgot to add that our doc also said there are no real noticeable symptoms if your kidneys start to fail, apart from feeling really tired, which could be a symptom of a number of other things. That's why monitoring the creatinine level is so important. That's the only way they can get an idea what's going on.

[Cindy J]

I am taking 400mg of cyclosporine with only one kidney. I found out last June that I was born with just one kidney. I have no problems as of today using the medication. I also take Cellcept.