Cyclosporine Dosing

[Joseph Z.]

Hello,

I'm 12 days post-hospital treatment of ATG, Cyclosporine, and Promacta for Severe Aplastic Anemia. Neutrophils and whites have improved and HGB has bumped up a bit, but platelets still falling (down to 7 this past week).

My question concerns dosing and administration of Cyclosporine. I'm 150 lbs, so the recommended dose is 3mg per kg twice a day (400 total per day). This week my blood/Cyclo levels were .59, well below the 2-4 target, so doc wants to increase dosage to 600/day.

I'm just wondering what other AA patients have experienced with regard to taking Cyclo with or without food. I do a daily fast of 16 hours to help boost immune function, so taking it every 12 hours with food is not an option for me. But I've also heard that taking it with food may increase Cyclosporine blood levels.

Is a higher dose necessarily more toxic even if it's not showing up in the blood?

My preference is to minimize the dose, but I'd also like to maintain my eating schedule. NIH recommends spacing every 12 hours (not sure why), so this wouldn't be possible if I were to take with food.

Thanks for your feedback. Good luck to all.

Joe Starr

[Hopeful]

Hi Joe,

Be patient with this disease. It will take more time than you think to for your marrow to return to normal.

I was also a fast metabolizer of cyclosporine. Initially, my doctors were ever increasing my dosage to exceedingly toxic doses to hit that elusive target of 200-400 (your 2-4). When I was on my highest dose (12mg/kg/day), my trough barely got over 100. I consulted with a few experts and we brought my dose back down to 6 mg/kg/day and stopped measuring the trough. 12 mg/kg/day was too high for me, and I saw many side effects. This was just my experience though.

The goal of taking cyclosporine every 12 hours is to maintain an even level in your system. However, cyclosporine does not work this way. It will peak 1-2 hours after you take it and then rapidly decline. I occasionally would get my cyclosporine levels tested outside the trough, just to see what was going on. 1-2 hours after taking my dosage, I would be around 1000! So, although by trough time, you may be below 100, earlier you most certainly are not. Unfortunately, there is not a lot of research in to the dosing of cyclosporine and a lot of the current AA guidelines are based on transplant patients. You may want to check your 2 hour reading just for a sanity check, if you still have doubts.

I think the non-modified version of Cyclosporine works better when taken with fats. I can't remember if there is any difference with the newer formula.

Be sure your doctors are aware of your fasting. ATG/Cyclosporine are suppressing the immune system so that the marrow has a chance to rebuild. I don't think you want to do anything now that would strengthen it! Also, it is very important that you are getting the vital nutrients to support the making of blood. For example, my doctor advised me to add clean red meat to my diet.

Hope this helps! I am not a doctor or in the medical field. I am a long-time user of cyclosporine who did a lot of experimentation with my dosages in the early days.

[lisa3112]

Hi, completly agree wirh hopefuls comment. Maybe eat a normal diet until your levels have corrected 🙂

[Meri T.]

Joseph,
I take cyclosporin every 12 hours : 9 am and 9pm.

In the booklet I received from the hospital wrote that it should be taken on an empty stomach to absorb better. So I checked it with the nurses, they said, I could take it after breakfast together with my other meds.

I checked with 2 separate pharmacists. They both said spacing is what matters, the doctors want cyclosporin to be in your system all the time, hence 12 hours apart.

I'm 50kgs and I take one 25mg pill at 9am, and another 25mg pill at 9pm. If I go in for a blood test, then I take cyclosporin after the test so that it doesn't fake the results. The spacing should at least be 6 hours apart (according to the pharmacist).

So, just to let you know that at my hospital went with, food or without food should be OK, preferably without food, just as long as you space it for 12 hours.

Meri

[Yaz]

I have been on cyclosporin since I completed hATG in August 2017 and was advised by my nurse specialist that i should take it after a meal. On one occasion I didn't as I was in a rush and I had a terrible upset stomach with bad diarrhoea all day.
Initially my dose was 245mg twice daily which was reduced to 130mg twice a day and my level is is maintained between 145-200.

Got results of my 2nd bone marrow biopsy on Friday and it appears that ATG hasnt worked at my bone marrow cellularity remains less then 10%.

[Hopeful]

Hi Yaz,

I wouldn't assume that the ATG hasn't worked at this point. The job of ATG is to knock out all of the attacking rogue cells. ATG won't instantly rebuild your marrow though.

My AA experts told me that the first sign of a response will first show up as an increase in one of the blood cell lines, not in the marrow. They usually won't do a BMB so soon after ATG unless worried about transformation.

Have you noticed an increase yet in your counts or a longer time between transfusions? It can take 3-9 months to see that initial response.

Good luck!