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PNH Paroxysmal nocturnal hemoglobinuria

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Old Tue Feb 19, 2013, 03:43 AM
rajeevkiit rajeevkiit is offline
Join Date: Feb 2013
Location: New Delhi,Delhi,India
Posts: 1
I want to know how long i live with current PNH Value-6.9%

My present age is 25 years.
2 months back i was recognized by PNH & blood clotting in brain.
And % was of Double Negative CD55 & CD59=6.9%
Doctor's remarks was Positive for PNH Clone.
Now if anybody has knowledge about this % value & can say me how long i live more after this PNH, then plz share.
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Old Tue Feb 19, 2013, 04:29 AM
NLJabbari NLJabbari is offline
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hello Rajeevkiit, I think the answer is Nobody knows! But there are PNH support groups that can help you to understand better than I can. Try getting in touch with-- http://www.aamds.org/about/pnh You can probably get some good support and good answers.

Please don't scare yourself. There are good medicines that can help people live a long life and the doctors are learning better ways to treat these illnesses. Please get in touch with AAMDS as soon as you can.

I'm sure there are others here who can tell you how to get in touch with a PNH group too.

Take care and be hopeful
06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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Old Wed Feb 20, 2013, 01:04 AM
Heather8773 Heather8773 is offline
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Im sorry you had a clot. That is a scary thing you experienced. Unfortunatly clots are a risk w PNH. There is preventative meds you can be given for this.
just educate yourself as much as you can and you will learn what is important to watch for. keep records of your tests. Www.pnhdiease.org is an online support group. They are very knowledgeable. We have learned so much from that site and this one.
You can order PNH information booklets or read them online at www.aamdsif.org
If you dont mind sharing, What is your clone size and counts? Do you know your LDH level?
My husbands is
LDH 237
Clone size 29
His platelets are at a new record high as of today! (w/o a transfusion that is,34 (we are literally in the hospital now)
I give thx to God for his improvement

I hope you will be filled w hope after looking over the two.
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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Old Thu Aug 22, 2013, 11:55 PM
TonyBegg TonyBegg is offline
Join Date: Jul 2013
Location: Santa Fe, NM
Posts: 25
thrombosis usually indicates Soliris treatment

Hey Ravjeevkiit. 6.9% is a small PNH clone size and these do not usually lead to clots, but PNH is a very variable disease. Here in the US, a thrombosis with PNH is usually a strong indicator for starting Soliris treatment. Could there be another cause for your clot? Good luck!
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Old Tue Dec 30, 2014, 01:27 AM
Susan Susan is offline
Join Date: Aug 2006
Location: Chicago, Il
Posts: 101
Yes, Soliris will help prevent future clots. My PNH specialist would tell you to go on it immediately if it's available in your country. It does not not affect your coagulation status or INR.
AA/PNH Dx 1998, Warfarin, Soliris
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Old Wed Dec 31, 2014, 01:36 PM
GoodDay5150 GoodDay5150 is offline
Join Date: Sep 2014
Location: Centennial, CO
Posts: 124
I am sorry to hear that you have PNH. I was dgnsd abt 3.5 yrs ago and had a succ MUD trans 3 yrs ago. I had many of the symptoms off and on for prob 8-10 yrs. I was pres blood thinners up to my trans date, and as far as I know I never had any clots. In my opinion, I would seek out a specialist who can poss assist you in getting Soliris, and or another drug for your disease. With that, I wld also advise you to inq abt a stem cell transplant in either your country or elsewhere. There are med centers/ drug companies that are seeking ppl such as yourself for research and treatments, so I wld also look into that. There is a lot of info abt PNH on the WWW, and plenty of helpful resources. That wld be my focus, not clone size, when do I die from this, etc. Good luck in your treatment.
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Old Fri Jan 2, 2015, 04:20 AM
Susan Susan is offline
Join Date: Aug 2006
Location: Chicago, Il
Posts: 101
Just make sure your doctor has put you on an anticoagulant such as warfarin.

Should you need a transplant the National Institutes of Health in Bethesda Maryland, US accepts patients free of charge from everywhere in the world.
You would have your hematologist call, then send your records. All the treatments are trials, one may be right for you. A friend of mine with PNH and clot history had his stem cell transplant there and is alive many years latter doing great!

Happy New Year!
AA/PNH Dx 1998, Warfarin, Soliris
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Old Wed Jan 21, 2015, 12:12 PM
Rea Rea is offline
Join Date: Dec 2013
Location: Columbus, OH
Posts: 11
Hello rajeevkiit, sorry to hear all that. I'll mimic these sentiments that there is a lot of support out there : ) and it's quite a variable disease, so there really isn't a good answer. I'm sorry.

I also agree seeking out a PNH specialist and Soliris. There's a private organization called PSI that helps with the medication costs (as of 2011-2013). https://www.patientservicesinc.org/

As well as with trying to not focus on the data. All of these diseases are so variable and over the years I've read a lot of people's stories. Each one is quite different. Also, there is some old data floating around out there. Soliris is a major game changer for PNH and I think it hasn't been out long enough to really see it's benefits.

A testament to it's variableness: I had a large clone size and 88% of my RBC were PNH cells. My haptoglobin never registered on the tests, even on steroids. And my LDH was 736 early in my diagnosis, after management (Soliris and steroids) it was average 270-350. Yet, I never had a blood clot (I had several scans and tests though because I also had severe migraines that caused vomiting and pain, indicators of a brain clot so it always had to be ruled out because of my PNH).

"Just make sure your doctor has put you on an anticoagulant such as warfarin." This is a common treatment for PNH patients if their platelets are in a good range and do not have Aplastic Anemia as well. Personally, I had low platelets with Moderate Aplastic Anemia, therefore I was not put on a blood thinning medication.

My low platelets may have contributed to the lack of blood clots, however PNH patients are always at risk regardless of platelet count. They still see patients with blood clots and low platelets.

Even though you are probably quite tired, light exercise like walking and leisure rides on stationary bikes (even sporadic a few minutes at a time) can help reduce a risk of blood clots.

I wish you the best of luck!
Rea, 31; PNH/AA Nov. 2011; Horse ATG Feb. 2012; RI MUD BMT Jan 2013; Overall doing very well!
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