Questions about dad

[Missy D.]

My dad was diagnosed with AA in September 2014. He's been getting blood and platelet transfusions every week since June. Took them awhile to figure it out and to get a knowledgeable doc. His counts are WBC 1.4, hgb 8.1, platelets 3, ANC .70. He's been taking cyclosporine since he was dx. Started at 200mg/day then switched him to modified cyclosporine and increased to 600mg/day. His kidney levels went up a little so they dropped him to 500mg/day and they went back down. He still gets blood, platelet and now magnesium transfusions every week.

Brief history on my dad: age 66. Had a heart attack and massive stroke at 35. Quadruple bypass surgery at 48. Has a seizure disorder and is now on Keppra. Was on dilantin for years which the docs think is what caused the AA.

I have been trying to research as much as possible and this site has been amazing but I still have a few questions.

My dad is being treated with cyclosporine only and his doc wants to hold off for now on the atg. Is it because of his other health issues? Do people usually respond to only cyclosporine? All my research shows standard treatment is atg plus cyc.

Also for the past few days he's been extremely tired(only awake a few hours a day), and very confused. Are these side effects to the cyc?

Has anyone experienced good response while also taking Keppra? I worry about this since the dilantin is what they think caused all this in the first place.

I would really appreciate any help. I don't live in the same city as my parents and my mom doesn't question anything. I know she is very overwhelmed by everything and wish I could help. Thank you!

[Hopeful]

Hi Missy,

It is interesting that your dad is taking Keppra as there is another person on this forum who is thinking that this drug may be linked to their wife's AA. (clairekim)

How much does your dad weigh? When I was on a very high dose of cyclosporine, I also was extremely tired and confused. The typical dosage these days is 5mg/kg-of-body-weight/day.

The fact that they didn't start your dad on modified cyclosporine has me a little concerned that his doctor may not have a lot of experience treating AA patients. If this is the case, you need to seek a second opinion from someone with experience ASAP!

[Missy D.]

Thank you for the response. My dad weighs 120lbs. He went to the doc yesterday and he does feel he's having side effects from the cyc. His kidney levels have gone up again so they told him to not take the cyc until Saturday and then to drop to 400mg/day. He goes back on Tuesday to see the doc again and recheck blood work. His hgb was 11 so for the first time in awhile he didn't have to get blood. Just platelets and fluid. Everything else was the same, WBC dropped to 1.1. Does this mean the cyc is working? As far as the doc goes, this is his second hematologist he's seen. The first one who did the BMB in July, couldn't figure out what was the problem and referred him to this doc. His new doc is the one to diagnose him with AA and definitely knows more than the last but I don't know how much experience he has with AA. I told my mom to ask him how mant patients he's treated with AA and she wouldn't. She's very old school, do whatever your doc says and don't question. I just want to make sure he's getting the best treatment possible.

[Hopeful]

Hi Missy,

If he is only 120 lbs, he is on a very high dosage of cyclosporine. The literature shows that more is not better with cyclosporine. Beyond 6 mg/kg/day, you are just adding toxicity. Is his doctor measuring the 12 hour trough to make sure that he is not at toxic levels? A more saner maximum dosage for him would be about 150mg twice a day (300mg/day total).

It would be good to ask how many AA patients this doctor has treated and why he is recommending cyclosporine alone vs ATG/CyA. It could be because of his age or comorbities, but it would be nice to hear this from the doctor.

It will be great if his next blood test shows the same improvement in his HGB! You need to look for the trend. Some people do respond to cyclosporine alone, but the percentage that do is lower.

Best of luck!

[clairekim]

Hi Hopeful,

I am sorry to hear about your dad. We all know what you are going through. We will help!!

My wife is also epileptic. She is taking 750mg of Keppra XR once daily. She was initially on Dilantin, but we got off it right away after she was showing immediate side effects (rashes). After about 2~3 years of taking Keppra, she was diagnosed of SAA.

I had a question. You mentioned that your father was on Dilantin and the doctors thought it was Dilantin which may have started his SAA. So was your father on Dilantin when he was first diagnosed with AA?

My wife just had her morning pills and is feeling very fatigue. She fell asleep. This is natural(?) for her after her morning medication. It hurts so much that she is taking so many pills.....

Have you asked your doctor about eltrombopeg (Promecta)? This is a new medication which is now FDA approved for AA patients who are refractory (no response) to ATG or had a relapse (e.g. - my wife). They say this medication is a medical breakthrough for SAA patients. They are quite expensive ($6k/month at minimal dosage) if you don't have full insurance coverage.

Good luck. Please do let me know if your father was on Dilantin when he was diagnosed with AA. These anti-convulsant medications must be really bad... we should have not started taking them as my wife's seizure wasn't that frequent (once per month or less).

David Kim

[Missy D.]

My dad was on dilantin when all of his numbers dropped. He had been switched to Keppra by the time he was diagnosed although it took a long time to get a diagnosis. I've been trying to get my mom to talk to the doc about promecta but so far hasn't. They meet with the doc on Tuesday and I've given her a bunch of questions to ask and hopefully she will. She's been more worried about him, as he literally is only awake a couple of hours in the morning and evening. So she seems more willing to ask questions. Thanks for your response!

[clairekim]

Hopeful,

Dilentin is one of the anti-convulsant medications known to cause Aplastic Anemia. But they say the AA should be transient and should improve when the medication is stopped. But I don't think that is 100% true.

Good luck!