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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Tue Jan 9, 2018, 03:48 AM
masa masa is offline
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Location: tokyo
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Regarding PNH treatment at a moment

Hello all,

This is Masa from Japan and first time to post.

I am told that I am PNH since last month and I would like to know if there is a good treatment for PNH in America.

I am married and have a 2 years old kid and intending to have another kid too.

So, I am very so worry about it.

Best regards,
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  #2  
Old Tue Jan 9, 2018, 12:46 PM
Neil Cuadra Neil Cuadra is offline
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Welcome to the forums. I'm sorry that you're gotten a diagnosis of PNH. It's important to learn about the disease and its treatment choices.

There is a good summary of PNH treatments at www.aamds.org/diseases/pnh/treatments.

You can read other information about the disease starting at www.aamds.org/diseases/pnh.

The PNH treatment drug called eculizumab is available in Japan (see press release) although I'm not sure if it's approved in Japan for treatment of PNH.
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  #3  
Old Tue Jan 9, 2018, 02:21 PM
GoodDay5150 GoodDay5150 is offline
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Hi Masa. We are sorry to hear you have been diagnosed w/ PNH, but there are many good resources available. In addition to what Neil has referenced, NORD is also a great resource for those or us affected by PNH. I will post the link below. I was transplanted in 2011, and if you search my posts you can read about my experiences w/ PNH.

Mario

https://rarediseases.org/organizatio...support-group/
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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  #4  
Old Tue Jan 9, 2018, 08:59 PM
masa masa is offline
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Hello there,

Thank you very much for your information.

I will read it though today so that I can learn about the disease.

Then, my doctor said eculizumab can be used in Japan.

But, this treatment is second last option for me like if LDH is extremely high.
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  #5  
Old Thu Jan 11, 2018, 05:45 AM
masa masa is offline
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Join Date: Jan 2018
Location: tokyo
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Hello there,

I have read the one you shared and thank you very much for that.

I will meet PNH patient next week.

Hopefully, they can help me understand more about PNH.

One good thing I found is that there are some researchers who are trying to cure PNH from very long time ago.

I hope new treatment is coming soon.

Best regards,
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  #6  
Old Fri Jan 19, 2018, 04:34 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
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Treatment in Japan

Masa,
I recommend Toranomon Hospital.
And I highly recommend Yuasa Mitsuhiro sensei. He explains every questions that you might have in a very straightforward manner. He gives patients time to air their worries and help them make choices too. Yuasa sensei is on schedule Monday mornings and Thursday afternoons. Anyone can get in. If you have a referral better still, if not, you just pay a referral fee.

Japanese National Health Insurance covers PNH and some more too. In my humble opinion, the quality of care at Toranomon for blood diseases is excellent.

Like you, when I discovered I was ill, I was tempted to try either Stanford or MD Anderson, in other words, the US. However, the reason I did my treatment here was first of all my worries that I might not survive using Medicare over there. I have no regrets that I did my transplant here in Toranomon, Tokyo.

Though I am MDS, not PNH, if you have any questions about the hospital here, please don't hesitate to ask.
Meri
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017.
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