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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Thu Jan 9, 2014, 10:13 PM
NLJabbari NLJabbari is offline
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Need Recommendation Folic Acid Brands

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

Thanks
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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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  #2  
Old Fri Jan 10, 2014, 08:01 AM
Marlene Marlene is offline
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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
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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.
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Old Fri Jan 10, 2014, 10:12 PM
NLJabbari NLJabbari is offline
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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
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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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  #4  
Old Sat Jan 11, 2014, 11:18 AM
Marlene Marlene is offline
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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.
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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.
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  #5  
Old Sat Jan 11, 2014, 11:34 PM
tom30 tom30 is offline
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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.
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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.
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  #6  
Old Sun Jan 12, 2014, 11:13 PM
NLJabbari NLJabbari is offline
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Thank you Marlene and Tom30. I will look for these forums or do a little research. I greatly appreciate the feedback
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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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