Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > PNH
Register FAQ Search Today's Posts Mark Forums Read

PNH Paroxysmal nocturnal hemoglobinuria

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Jan 9, 2014, 11:13 PM
NLJabbari NLJabbari is offline
Member
 
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Need Recommendation Folic Acid Brands

Wondering if anyone can recommend a good "Folic Acid" brand.

Thanks
__________________
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...
Reply With Quote
  #2  
Old Fri Jan 10, 2014, 09:01 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
Look into Thorne products. They have use the bioactive forms of the B vitamins. Consider taking a B complex too. The B vitamins need each other to be most effective. Taking folate alone can mask a B12 deficiency in the future.

I like Thorne and Jarrow. You can get both from iherb.com
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
  #3  
Old Fri Jan 10, 2014, 11:12 PM
NLJabbari NLJabbari is offline
Member
 
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Thanks Marlene! Currently my son is taking Nature Made Folic Acid w/DHA. It's a softgel that also has B-12 and Omega-3(DHA).

I was just wondering if there was perhaps a better product out there. I tried looking on Consumer Reports, but didn't really find anything.
I remember an MF member, Marla Brown. She was really on top of the best natural products available. She did really well "au natural" with beating AA

I will look into the product you mention.

Thanks again
__________________
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...
Reply With Quote
  #4  
Old Sat Jan 11, 2014, 12:18 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
In the past, Thorne was only available to healthcare professionals so they are very reliable. You really want to use the active folate vs the folic acid. There are a couple of threads discussing the reasons for this. If you want me to find them for you, let me know. Folate does need the B12 in order to be utilized so it's good he's taking that too.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
  #5  
Old Sun Jan 12, 2014, 12:34 AM
tom30 tom30 is offline
Member
 
Join Date: Sep 2010
Location: Brooklyn, New York
Posts: 108
I tried folate a while ago for some reason I was fatigued while taking it so I stopped. My folic acid had always tested in range, I had the same reaction to B12 injections. I do not have any issue with methyl B12 (Jarrow Formulas Methyl-B12, 1000mcg) pills I take and they keep my B12 levels where I want them. My guess is that I had some kind of reaction to the Methyl component of the Folate and the B12 injections. But its just my guess.

The brand I was taking was Jarrow Formulas Methyl Folate according to the description - Methyl folate ((6S)-5-methyl tetrahydrofolate or 5-MTHF) is the most biologically active form of folic acid. Quatrefolic is the 4th generation development in folate delivery. With certain inherited errors in metabolism and under a variety of physiologic stresses, the transformation of folic acid into the active form of folate either does not properly take place or is inadequate. Unlike folic acid, this form of folate can cross the blood-brain barrier. Methyl folate is needed to support cardiovascular and neurologic health and proper cell division. folate supplementation during pregnancy has been shown to reduce the risk of neural tube birth defects.
__________________
Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
Reply With Quote
  #6  
Old Mon Jan 13, 2014, 12:13 AM
NLJabbari NLJabbari is offline
Member
 
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Thank you Marlene and Tom30. I will look for these forums or do a little research. I greatly appreciate the feedback
__________________
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...
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Advice for new dx MDS Jen2012 MDS 6 Wed Oct 24, 2012 07:01 PM
Epival LynnI Drugs and Drug Treatments 18 Sat Sep 13, 2008 06:18 AM


All times are GMT -4. The time now is 01:31 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org