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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Tue Jan 8, 2013, 09:53 PM
Heather8773 Heather8773 is offline
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Promacta advise? Ok for PNH?

I saw a post by Sally c that mentioned promacta (great post thank you) and when I looked into it a little it sounded like something to ask my husbands DR about as his last labs reported
Plateletts 14
Hgb5.5
Wbc3.6
It seemed back and forth about being ok for PNH but my real question is how was it for anyone that took it? Benefits over risks? What risks are there?
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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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  #2  
Old Wed Jan 9, 2013, 05:12 PM
Sally C Sally C is offline
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Hi Heather,
First of all I'm glad the post was helpful for you.
I really don't have an answer for you regarding PNH. I do know that NIH has done AA/MDS clinical trials for Promacta. I did a search for Promacta/PNH but really didn't find anything.
There was a concern for cataracts with Promacta but NIH has decided it wasn't an issue so they have stopped my husband's eye exams. There was also a concern for an increase in blasts but I don't know that it has been much of a probem. It wasn't for my husband. If I'm not mistaken Nplate, which is the same type of drug, did have a problem with increased blasts.
I'll e-mail our research nurse at NIH and ask if they have any clinical trials for Promacta/PNH and will get back to you.
I wish you and your husband well.
God Bless,
Sally
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Old Wed Jan 9, 2013, 09:44 PM
Heather8773 Heather8773 is offline
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Sally
Thank you so much for responding! That is very sweet of you to look into this for meAnd for asking about my husband

We are signed up for my husbands first blood transfusion tmrw. He is very scared because of not really coming to terms yet with being dx (totally understandable) and quote "having someone eles blood in me" he's worried about it being safe. I told him thanks to this site and another pnhdisease.org that manny people have expressed the safety, importance, and feeling better after having them. So we will see how tmrw goes!
I look forward to reading great news about your husband! do you mind if I ask how did y'all handle wrapping your mind around his diagnosis? Any advise on cheering up my husband?

Thank you again I really appreciate your kindness
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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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  #4  
Old Thu Jan 10, 2013, 08:09 AM
Sally C Sally C is offline
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Hi again Heather,
Right now my husband is doing amazingly well especially considering he needed about 55 RBC/platelet transfusions for two years in a row - and was at one time on his oncologist's "death list". The Promacta really worked miracles for him as he has been transfusion independent for about a year and a half now. It helped his RBC's as well as his platelets. And he was a very brave soul as he was the first in the MDS/Promacta clinical trial at NIH.
It took 6 months from when we found out that Don had a problem to get a firm diagnosis. He started getting transfusions about 4 months before we got his diagnosis of MDS at NIH in Bethesda.
I think with any type of disease or tragedy it takes time to get our brains around the concept. But over time you just seem to adjust to the idea - especially as you are dealing with day to day living as well as doing what needs to be done regarding the disease. It just slowly becomes part of your life and psyche. And I think your husband will get used to the idea of having someone else's life saving blood in him. They are very careful these days about transfusions. Also they have made and continue to make great strides in dealing with bone marrow diseases.
The forums are a wonderful place to go as there is so much support and knowledge - and you can see that people are going on with their lives in spite of the disease. The participants are always there with answers to any questions they may be able to help you with.
I e-mailed our research nurse last night asking about PNH/Promacta trials so I should hear from her today. Once I do I'll post what she has to say.
I don't know if you and your husband are of people of faith but if you are, putting your husband's life in the Hands of the Great Physician is about the best thing you can do.
I hope all this helps. Give your husband my very best wishes and you take care of yourself too. I don't know who it's harder on - the patient or the caregiver.
God Bless,
Sally
Heather, I just heard from NIH. Our research nurse said there were no PNH/Promacta trials that she knew of. But there could be trials for PNH. She suggested to always check out clinicaltrials.gov.
Please keep us posted!

Last edited by Sally C : Thu Jan 10, 2013 at 11:26 AM. Reason: Additional information
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Old Sat Jan 12, 2013, 01:30 AM
Heather8773 Heather8773 is offline
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Sally I am sorry it has taken me so long to respond. I was very emotionally drained yesterday. I think seeing my husband in a hospital bed and realizing the seriousness hit me like a Mac truck. this is real. This is serious. This is forever.

I am a believer. I have been able to stay mostly positive because I can see the blessings in disguise and thank God for them. Like our marriage being stronger then ever and the people he knew we would need around us

Thank you for sharing your experience. I really appreciate it!
I am so happy to hear your husband is doing well! I am happy he is transfusion free! It was very kind to look into promacta for me. I talked to my husbands Dr after his transfusion yesterday about promacta or epo. He said he prefers epo. He is having more test Monday then we can talk more about that. He said he worried about scarring in the bone marrow with promacta. But I worry about 14 platelets and 5.5 hgb also. Who knows. I do know my husband has a blue collar job that could have him one accident away from bleeding to death at 14 platelets that were trending down quickly.

His blood transfusion went well. Very good nurses took care of us all day he had 2 pints of rbcs and is now 6.7 he also had one bag of platelets that took him from 14 to 47 platelets. Better is better he had body aches this morning but that was his only symptom I was wondering if that could be from laying still all day then a long nights sleep? Did your husband ever experience this?

we had a talk about the life saving blood. He now realizes the importance. I had to get very real with him. Until now he wasnt ready to hear somethings or hed shut down. He went from being a heathly 30yr old man looking forward to kids to a life changing dx w possibility of some of those dreams not happening. It has just taken him awhile to realize the importance of not running from this but he's getting there thanks to people like you that have been kind enough to reach out and share experiences.
__________________
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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  #6  
Old Sat Jan 12, 2013, 08:38 AM
Sally C Sally C is offline
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Hey Heather,
Don never had any kind of body pain but he doesn't feel much pain anyway. The only person in the world who had shingles and no pain!
As to the scarring of the marrow with Promacta - Don gets bone marrow biopsies every 6 months at NIH - and is due for one at the end of this month.
Their research hasn't been published for the most part, but Don has shown no signs of marrow damage during or after taking Promacta.
Ronald is young and that is a plus. There are so many different treatments out there. They are bound to find one that will turn things around.
I wish you both the best.
God Bless,
Sally
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