Cyclosporine Dose??

[prayingrbc]

Hello everyone, I am wondering if anyone has had luck on a lower dose of Cyclosporine. My father had ATG and Cyclo after diagnosis in late November 2014. He has had little response as far as hgb and plts, wbc is holding strong though! Throughout he has had issues with the Cyclo. Initially he was at 400 twice daily, then after issues and brief breaks from it so his kidneys could recover, slowly he has been lowered to 200 twice daily. I am wondering if anyone has had any luck recovering from SVAA with a dose as low as 200 or even lower ?

It seems to be very hard on his system. (He is early 60s, 6'2 and about 189 pounds.)

[Hopeful]

Hi prayingrbc,

My comments are assuming that your dad is taking the modified form of cyclosporine (like Neoral or Gengraf), not SandImmune.

200 mg twice a day seems like a safe therapeutic dosage for cyclosporine. That works out to roughly 4.5 mg/kg/day which is right in the recommended range.

I also started on too high a dosage and then went down to a saner dosage of 4 mg/kg/day. This worked for me, and ~7 months after ATG, I had a slow upward trend in my counts.

Research now suggest that too much cyclosporine does not make it work better but just adds toxicity.

So, based on my experience, 200 mg twice a day is a good dosage and should be better tolerated than his previous high dosage.

Wishing him well -

[prayingrbc]

Ok so after some seemingly very toxic side effects, my dad has been off all meds for about 2.5 weeks. Last night he started 100 mg cyclosporine (twice daily)

Has anyone had luck with a dose this low? His current state involves transfusions of platelets and blood 2-3 times a week. He is still considered SVAA status after 3.5 months of atg+varying doses of cyclosporine.

Thank you.

[Hopeful]

prayingrbc,

It may be that they are testing whether your dad can tolerate any cyclosporine. Some people can't. It is good that they are allowing his kidneys a chance to recover.

My comments below again pertain to the modified form of Cyclosporine and not SandImmune...

Your dad was previously on a dosage of 9 mg/kg/day, which is fairly high.
He currently is on 1 mg/kg/day, which is likely too low.

Cyclosporine is thought to have a fairly narrow therapeutic range: too little and it does nothing, too much and it is very toxic. Unfortunately, everyone metabolizes cyclosporine differently. So, what may work for one person, won't for another.

The papers that I have read and my AA expert had suggested a therapeutic range of 2.5mg/kg/day - 6 mg/kg/day. However, there is no formally established cyclosporine dosage for the treatment of AA.

I have experienced the toxic effects of too high a cyclosporine dosage (12 mg/kg/day).
I more recently have experienced the limited benefit of too low a cyclosporine dosage (2 mg/kg/day). My counts have continued to slowly fall while on this dosage.

While your dad is on cyclosporine, encourage him to drink a lot of water. Also discuss with his doctor whether he should take magnesium, as I have read this can be beneficial to the kidneys while taking cyclosporine.

What other medications was your dad taking?