high creatinine levels

[amberb]

Has anyone else had problems with increased creatinine levels while on Cyclosporine and/or Desferal?
My creatinine had stayed around 1.1 or 1.2, I've been on Cyclosporine for a little over a year. Last month I started Desferal infusion and since then my creatinine has gone up to 1.5. My Dr lowered my dose of Cyclo and is having me skip weeks here and there of the Desferal. Also, this past week my Cyclo level was much higher than normal at 475.
Has anyone had these complications? My Drs have always been very cautious, is 1.5 even that high?

[donna j.]

Hi Amber,

Yes. My cyclosporine is montored weekly and the dr. likes me to stay between 200-400. It is adjusted weekly for any changes. I have been at 1.3 2x a day, equaling 260 mg. My creatinine is between 1.4-1.6, high but I am older, and kidneys don't function at 100% as you age and get frequent transfusions. Last week my cylco #s were high and I was adjusted down to 1.2 twice a day, at the same time my creatinine had jumped up.
The dr. Instructed me to reduce my cyclosporine because my creatinine levels had gone up

I had recently begun a steroid, budesonide, which I believe contributed to the jump in creatininee and cyclosporine levels.

All along my dr. keeps telling me to flush with plenty of fluids to get the cyclosporine out and keep the creatine levels low. I do, I always drink 64 oz of water daily, and then have milk or juice to supplement.

So, in response (I do take other medications which may impact creatinine levels too), I do believe there is a relationship between the creatinine and the cyclosporine levels.

donna

[Lisa V]

Amber, high creatinine readings while on Cyclosporine is really common. You can do a forum search using "creatinine" as a key word and pull up all kinds of threads. Ken's had to adjust his cyclo dosage several times for that reason. He has also gotten into the habit of drinking lots of water, which helps. It's a nuisance, but water is cheap and non-toxic, so having to carry a bottle with you and use the bathroom more often is a small price to pay.

A one time reading of 1.5 is not a huge deal, but if it stays at that level or higher, it's not a good thing. Our doctor said that at 1.4 you've lost about 25% of your kidney function. He wants to see it stay at 1.3 or below. I remember asking him how important it was to keep his CsA at the therapeutic level, and he said "It won't be important at all if you end up losing your kidneys." It's all relative, you have to weigh which is the greater danger.

If you've been on cyclo for over a year, you could probably stand to lower the dose a bit. I'd try the water first, but if that doesn't help, then I'd have a talk with the doctor about tinkering with your meds. How much are you currently taking? The same dosage that works for a while may become toxic over time. I don't have any experience with Desferal, but I understand that can make it worse too. You just have to keep monitoring it and figure out a way to balance the good and harmful effects of the medications.

[dfantle]

Hi Amber, I had the horse ATG in March of this year, and my team in Seattle likes my cyclosporine readings to stay in the 200 range, I started out taking 750mg/day of cyclosporine immediately after the ATG and am now down to 425/ day, divided between AM and PM 12 hours apart. My creatinine rose into the 1.2 range when I started taking the cyclosporine but since starting Exjade about a month ago has ranged up to 1.4 so we're watching it carefully. My cyclosporine and kidney levels have been checked weekly since the ATG to closely monitor them. My team has never suggested I skip a dose because they want me to maintain the levels in my system for the best result.

I'm supposed to drink around 80 oz of fluid per day, divided among water, juice and tea. I also drink coconut water which is a great source of potassium and electrolytes.

Best.

Sent from mobile phone-excuse typos