Aa & Pnh

[LORETTA B]

I have had aplastic anemia for 2 years and have recently contracted PNH. I have been taking Soliris (a new drug approved by the FDA in May 2007) for 2 months now. My potassium has been creeping up ever since. Yesterday's level was 6.1. Is anyone else in this situation, and what was done for you to correct the potassium level? (I'm not sure it's related to the Soliris, but nothing else has changed with my diet or medication)

Loretta

[Susan]

Hi Loretta,

I'm sorry you have developed PNH in addition to the Aplastic Anemia. No, this is not a common complaint to my knowledge of Soliris usage. Are you seeing a PNH specialist? In any case your doctor can check with Alexion for you to see if others have seen their postassium drop.

My potassium has actually been a little low a few times but I haven't tried Soilris yet. Do you know your PNH clone size? Are you on Coumadin to prevent clots? I am but my platlelets are dipping, hope they don't go too low or I'll have to stop the Coumadin.

suz

[LORETTA B]

Suz - my doctor at MD Anderson seems to be familiar with PNH, but I'm not sure he's a specialist. My potassium is actually going too high rather than going down. I have contacted Alexion and they haven't had any complaints about rising potassium from other patients. I do not know my PNH clone size and I'm not on Coumadin. Did I read your bio correctly, that you were diagnosed in 1998? Where are you treated?

Loretta

[Susan]

Hi Loretta,

MD Anderson is certaining one of the best centers in the nation. In addition to my local AA specialist at University of Chicago I see Dr David Araten at New York University. He trained under one of the top 2 or 3 PNH specs in the world, Dr Lucio Luzzatto. If I need ATG in the future I'll have him do it. Dr Maciejewski at Cleveland Clinic is excellent too.

Loretta, it is vital you learn your clone size as that shows the degree of risk you have for developing life threatening clots. Most of us PNH patients are on aniti-coagulant unless the clone size is small or the platelets are too low.

Check the complete PNH Specialist List and contact info at www.pnhdisease.org - 600+ PNH members!! It's another great support groupforum, also with several members associated with the Aplastic Anemia and MDS Foundation. Two of our support members are on AAMDSIF Board m Many of us have AA as well, a few have MDS. PNH will be featured on Mystery Diagnosis Dec 3rd!! See site above.
Maybe someone there will give useful comment on high potassium.

Wishing you well,

suz

[Susan]

Oh, Loretta I forgot to say Dr "Mac" trained under Dr Neal Young at NIH in Bethesda, Maryland. He's head of the Bone Marrow Failure Consoruim and is great for both research and clinical treatment. Have you been to an AAMDS Patient Conference yet? Maybe we can meet there. I hope to go next year.

suz

[LORETTA B]

Suz - When I was doing some AA research last year, I came across an article written by Dr Maciejewski; I sent him an email asking if he would see me - he responded "sorry - perhaps Neal Young at NIH". I have come across Dr Young's name many times these last 2 years. I know they were both at the conference in Las Vegas. I had intended to go, but relapsed in late June and had to undergo another round of ATG in Houston. By the time of the conference, my counts were so low, I was afraid to travel.

I'm tentatively planning to see if I can get an appointment with Dr Young later this year.

My platelet count hovers around 20 - is that too low for anti-coagulants?

[Susan]

Umm, how odd Dr Mac wouldn't see you. Only possibility is he was swamped with research and patients for the time being. He has always appealed (in a suble way to those patients he knows personally) for patient referrals to keep his dedicated PNH Clinic going but especially those who will sign up for his long term PNH patient data study. patient characteristics, history, meds and long term outcomes.

Yes, Dr Young is the best. Appointments through Olga, last info I have, 301-496-4462. I'm afraid platelets of 20 are too low for anticoagulants. However if you don't often have dark urine (probably smaller clone size) your risk for clots may be reasonably low. Many PNH/AA patients never have visible hemolysis or it is pretty mild. Drink tons of water to clear your liver in any case. Hemolysis is going on even when you don't see it.

Great to find a buddy here, let's keep in touch now and then.

suz