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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Mon Nov 19, 2007, 08:30 PM
Splitz Splitz is offline
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Join Date: Nov 2007
Location: Central coast of CA, USA
Posts: 4
Beginning Soliris

My name is Lee.
I was recently diagnosed with PNH, and am in the process of educating myself and looking for others to interact with and learn from.

As it is such a rare disease, I am very pleasantly surprised to see any groups at all online, although I should not be:-)

I will begin Solaris as soon as I can be vaccinated for meningitis, but I am not at all sure what the best course of treatment is. Fortunately, my hemo is not sure either!

There is so much conflicting information, even among medical professionals....it IS cancer, it is NOT cancer, for instance. Does it matter? LOL, mortality rates don't look too good however it is defined.

I look forward to meeting everyone here,

talk soon,

Lee
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  #2  
Old Mon Nov 19, 2007, 11:33 PM
marc marc is offline
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Join Date: Apr 2006
Location: Aurora, IL
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Hi Lee,
I'm sorry to hear you also have PNH.

I have had PNH and Aplastic Anemia for two years now. I average blood/platelet transfusions every two weeks and am also taking Soliris.

I have been on Soliris for many months now and it has been very helpful. I would recommend getting a port inplanted if you don't have one as it makes it easier to get both Soliris and transfusions.

I also would recommend seeking out a PNH specialist in conjunction with your hemo doc. They can give you a great deal of information regarding PNH that a hemo can't if they aren't familiar with the disease. Depending on where you live and insurance there are several around the country. Dr. Araten in NYC & Dr. Maciejewski at the Cleveland Clinic are two I've seen. I know there are some on the west coast, at the NIH in Maryland and I believe Florida. I am sure there are others spreadout throughout the country, but not that many.

Don't believe the data on mortality rates, especially with Soliris now available. A lot of the data on the web is old. I have met people who have had PNH for over 25 years.

Not to say anything negative about this website as it is full of great information, but you may want to check out http://www.pnhdisease.org
This site is THE major PNH support group website with hundreds of users, tons of info, links to many subjects, discussion and posting sections similar to this site. The people who are the main movers and shakers on the support site also are heavily involved with the PNH Foundation, a non-profit org that offers financial assistance to PNHer's.

Again, I don't wish to downplay this site at all, I have used and viewed it many times, but it may be worth your while to check out the other one as well. You will need to register on it like this one.

I wish you luck as you start Soliris and please feel free to post any questions you may have. If I can help answer any, I will be happy to.

Marc
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Marc, Severe AA and PNH; diagnosed April 2006; Treated with ATG, currently taking Soliris
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  #3  
Old Tue Nov 20, 2007, 08:57 AM
Splitz Splitz is offline
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Join Date: Nov 2007
Location: Central coast of CA, USA
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thanks Marc!

For both the welcome and the information!

I visited the site you suggested earlier yesterday, I am still waiting for an activation link. I tried registering a second time, but it says I have already submitted my email addy, LOL!

I certainly do plan to seek out a doc with far more experience with PNH. Mine readily admits he has seen only 2 patients in his career (and by "seen", I am not sure he TREATED them, heh:-) my primary care guy says the same.

I have an appointment with a young guy out of Stanford for a 2nd opinion/better explanation, but I am leaning toward UCLA after I see him.

When were you diagnosed? I have only had to blood transfusions and many, many iron infusions since February. I would still be having them (and would still have no diagnosis aside from anemia) if I had not pitched a fit and demanded to have my marrow tested. Doc did not feel it was necessary. I disagreed. He got huffy. I stood my ground. Glad I am such an obnoxious beast.

Do you have nausea? I have really been struggling with this, I think it is the iron, but I have no real idea. I am taking Procrit, folic acid and oral iron. Any clues?

Again, thanks!@

Lee
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  #4  
Old Tue Nov 20, 2007, 09:15 AM
marc marc is offline
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Join Date: Apr 2006
Location: Aurora, IL
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Hi Lee,
I'm glad you are going to see a PNH specialist.

I was diagnosed two years ago. I'm on Soliris, Procrit, Folic acid and Exjade. Exjade removes the excess iron that is introduced into the blood thru a transfusion. Have not had too much nausea but certainly have had some in the past. Most of it due to certain meds.

As for demanding treatments, always stand your ground! You are your own best advocate. No one else is going to fight as hard for you. If you feel something isn't right, get another doctor.

Anyway, got to run, but have a great Thanksgiving!
Marc
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Marc, Severe AA and PNH; diagnosed April 2006; Treated with ATG, currently taking Soliris
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  #5  
Old Sat Nov 5, 2011, 07:58 PM
Mike LeVart Mike LeVart is offline
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Join Date: Oct 2011
Location: United States
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Soliris

Lee,
I am sorry to hear about your diagnosis. Lee My name is Mike and I was diagnosed with A plastic anemia when I was 15 and there was no A plastic anemia research facility. I was given 6mths at best. A drug that does not work for most aa patients worked for me. I take 200mg of Anadrol per day just to keep my platelets and white cell counts up to a safer level. I just turned 40 in August. I was diagnosed with PNH in 2007 however I believe from looking back that I was not diagnosed until very late in the progression of the disorder. What I am trying to say also is listen to the specialist in the field of PNH. Even my Oncologist who specializes in aplastic has limited knowledge of the current treatments for this disorder. Not only that, some doctors still aren't sure about the success of Soliris and will not suggest it. They obviously aren't the ones dying though are they. Since I started Soliris in January, I have been a new man. I have more energy than I know what to do with. No blood transfusions since and my LDH counts have gotten as low as 220. Before they had gotten as high as 865+. Make sure and have your doctor check your hormone levels becuase if they are very low you can qualify for some great meds that help produce testosterone which also really stimulates Oxygenated red blood cell growth. Please let me know if I can help in any way. Good luck in the future
Mike
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  #6  
Old Tue Dec 18, 2012, 01:42 PM
Rich91 Rich91 is offline
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Join Date: Dec 2012
Location: USA
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Question vaccine before soliris

Hi,
I am new to the forum, but not new to marrow issues. Diagnosed in 1991 with SAA, treated with ATG, cyclosporine and steroids. I became transfusion independent, then developed PNH. Have been in the holding pattern, circling Soliris for a few years (glad that I could hang on long enough for it to be approved!).
Now my hemolysis has become unmanageable, LDH off the chart, they couldn't give me a count when I passed 1800 or so.
I will be starting Soliris as soon as the meningicoccal vaccine takes affect.
Question: which vaccine have you Soliris patients received? Menactra?
One clinic recommended polyvalent, another conjugated vaccine.
Thanks in advance for any tips or advice you seasoned Soliris patients may have!
Rich
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  #7  
Old Fri Jan 4, 2013, 12:21 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Lee I wish you luck w eculizumab! My husband was dx Halloween 2012 (trick or treat right?) he has had 6 treatments. He experiences head aches and a lot of drainage. He seems to feel more energy after treatments. Still waiting to see what everything looks like on paper after next blood test results but after 2 treatments LDH came down almost 200 pts! We are looking to be informed and connect w others as well! If you have any questions for us please feel free to ask!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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