Cyclosporine and shower issues
 

Hi All. So my son is on Cyclosporine and about once a week simple cannot stand the shower water on him. He says it burns, I checked the water and it's not hot. It's happened too when doing dishes, he says his hands burn from the water. He's 15, and it isn't that he doesn't want to take a shower, he is very genuine that it hurts. Anybody have anything similar, or suggestions on how to google it?

I mentioned it to the doc last time, he doesn't seem to think its anything major, and while I agree I'm still curious about it.

Thanks!

Yes....
 

My ability to sense cold and heat is all out of whack. An ice-cube in my hand feels just like scalding water. It seems like the more extreme the temps on either end, the more they feel the same. Weird, I know.

Anyway, they may want to check his trough levels because I can tell you that this "weirdness" is more noticeable for me at higher levels.

Can he handle ice cream?

Hi edithr,

I had the exact same symptoms when on the higher doses of cyclosporine right after ATG. This is listed as one of the drug's side effects. It would take me about 30 minutes to get into the shower every morning because of the burning pins and needles feeling. I also couldn't do dishes without gloves on. I was on much too high a dosage, although my trough didn't indicate this.

Lowering my dosage improved things significantly. Now I have a hard time getting -out- of the shower once again :)

What is your son's cyclosporine dosage per kg of his body weight?

Thank you so much for letting me know he's not alone! The doc said he never heard of that side effect, so now I feel better. And since it was a rather minor side effect, I didn't push it.

Anyway, his trough is 166 (that's the cyclosporine level just before he's due for his next dose, right?) He takes his meds at 7 am and 7 pm, and takes his shower about 8 pm, so that would explain the effect at higher doses.

I will have him take his shower at a different time and see if that helps.

Again, thank you! These boards are such a Godsend, what did people with these diseases do before the internet? I feel so alone now, I can't imagine if I had nobody to talk to. :)

Hi Hopeful,

He takes 225 mg in the morning and 250 in the evening, and he weighs 145 lbs. So I'm not sure what his dose/kg is, can you tell me?

Thanks again!

I also wanted to chime in that my skin was also super sensitive during cyclosporine. My hands would often burn from the slightest touch, even things like grasping door handles, and my feet would feel like they were getting rug burn from just walking around home in bare feet.

Luckily, I returned to feeling normal very quickly after I stopped taking it!

Hi edithr,

145 lbs = 65 mg
If he is take 475 mg/day than he is taking slightly more than 7 mg/kg/day which does not seem crazy-high. However, it is believed by some doctors that dosages above 5 mg/kg/day (or 325 mg/day for your son) only give toxicity without added benefit. Keep an eye on his trough. It could start increasing rapidly, at which time you could discuss with the doctor lowering his dosage. A lot of doctors like to try the maximum tolerable dosage right after ATG for the biggest "shock-and-awe" effect on the rogue cells.

Cyclosporine peaks about 2 hours after taking. It would be great if just changing the timing of his showers made them more tolerable. I can't remember if there was a correlation for me. I just remember it was misery until I lowered my cyclosporine dosage!

His dosage keeps getting changed. 2 weeks ago (I think. Maybe it was last week? It's becoming a blur) he was on 225 2x a day, his trough was 133.

It was last week, I got my 3 ring binder out with all the lab results. His kidneys seem to have some trouble with the higher dosage, but the doc wants his level to be closer to 200. His Urea Nitrogen at the current dosage is 28 (range is 6-23).

Thanks for the help.

I would be more concerned about his kidneys than an arbitrary trough measurement. I spent a lot of time researching this because my doctors were forever trying to increase my cyclosporine dosage to hit the upper end of the "targeted range". For me and (from what I read) for many pediatric patients, cyclosporine is cleared out of our system at a faster rate than normal. So, the trough is not a reliable indicator of determining the therapeutic range. For example, my trough measurements were always closer to 50-70. It took massive dosages to raise it to 100...more than I could tolerate. Luckily, one of my specialists doesn't believe in troughs (except to check for too much toxicity). He encouraged me to back off to 5 mg/kg/day, which I gladly did.

I've seen reports that talk about the differences in the metabolism of cyclosporine from person to person. They suggest that a 2 hour reading may be a more accurate reading to track than the trough. Unfortunately, nothing has been standardized.

In summary, I would encourage you to pay attention to his kidneys numbers and not go chasing an arbitrary "magic trough number" that was originally established for kidney transplant patients.

Hi Hopeful,

When you say pay attention to his kidney function, what am I looking for? Like I said, the only number that is high (usually it's the only number, sometimes it's others) is the Urea Nitrogen.

I am starting today to insist he drink 64 oz of water daily until his next labs (Tuesday - they're closed Monday). I'm hoping that will hope. How much water did you drink daily?

Hot hands/feet on ciclo
 

Hi, I can definitely concur with the hot hands and feet. I also get flushing during the day and something like a cold shower which runs through my body and travels down to my legs but these shudders take at least 30 seconds and travel down your body very slowly. I asked in hospital about the very hot tingly hands and they said you can get some medication. I didn't, but if it bothers him you should ask cos it seems a really common symptom. Your Doctor may be unaware of exactly how it affects him, i.e. I imagine it isn't only washing up thats difficult. Hope he feels better soon, its bad enough when you are an old fogey but being young and feeling flaked the whole time must be pretty miserable. His dose of ciclosporine seems high but he will be carefully monitored. Good luck!

Hi Edithr,

I drink at least 64 oz of water daily. It is also very important that he is well hydrated on the day of the test to avoid false readings. I would watch his creatinine and BUN. Also, you could ask for a simple urine test to check for protein in it, if you are really concerned. I consulted with a nephrologist who recommended checking urine every 6 months while on cyclosporine.

Did he still have the tingling feeling while taking 225mg twice a day? A little increase can make a big difference in side effects (and vica-versa)!