What is the appropriate daily B5 dose for TDD to manage symptoms better?
Ryan is a 22 year old adult and is now taking 500mg of B5. He has great energy and no longer has spells of weakness or fatigue like he did when he was on 50 mg 4 years ago.
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Hanna is a 29 year old adult and for the past 2.5 years she has been taking her vitamin B in her mito cocktail; daily dose: B9 (folinic acid) 20 mg and B5 (pantothenic acid) 10 mg. She has not had a seizure, spells or an episode since she has been taking the vitamin B.
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Yuito is a 3-year-old boy. He has been taking 250mg of B5 a day since last month. It’s been about 3 weeks and he is walking much more distance than before.
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Thank you so much for sharing @saori1989JAPAN! I am so glad to hear Yuito is doing so much better. Please continue to keep us posted and ask questions. 
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Robin, it is very interesting that you have seen improvements with such a low dose of B5 (10mg). Ryan was on 50mg and still had many episodes of fatigue, balance and weakness issues. It wasn’t until his dose was higher than 250mg that we saw improvements.
We will be increasing Hanna’s B5 dosage from 10mg per day to 50mg per day starting about 1 month from now. This is the first “easy” increment that can be added to her mito cocktail. Although she is doing well (no episodes) on 10mg, we are very curious to see if she can do better (increased energy, speech improvement, etc.) with a higher dose.
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@Bob_Mitchell, please keep us posted if you plan to increase it more and how she does it on!
Robin, I have one other thought. Hanna is on a much lower dose of b5 than Ryan is. Bob reported that her speech has declined some over the years. Ryan’s has actually gotten clearer over the past 4 years once on an increased dose of b vitamins (b50 complex) and then b5 specifically which is now at 500mg. It makes me wonder if there is a connection.
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Thanks for the note, Kasha. We get her B vitamins in her mito cocktail which comes from a special compounding pharmacy in PA and via UPS shipped once a month. September’s script will include a larger dose of B5 - 50 mg rather than her current 10mg. We will monitor/observe her speech and a few other attributes (e.g., energy level, activity level, sleep, weight) to see if any changes. Also she is going to have a formal speech and language evaluation in early September to give us a current baseline. We have another visit scheduled with her geneticist in a few months to review the “results” of the increase and decide if we want to increase even more. Should be interesting…we are happy to share our observations with others!
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Hello! We have seen significant and immediate improvements from switching Cole from the RDA of 2mg of b5 to100mg of b5. Cole is 2.5 years old. Thanks!
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Hello. We use B vitamin complex product which contains B5 100mg, B9 400microg, B1 25mg, B2 25mg, B3 25mg, B6 10mg, B7 300microg, B12 100microg for our 3 patients. One of them was in acute metabolic crises when we started this product. She had rhabdomyolysis, arrhythmia and encephalopathy. Her CK level dropped by half , mental status improved within 24 hours. EKG returned to normal completely after 4 days. During long-term follow-up, her motor and mental skills improved, TANGO2 spells ended.
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Thank you so much for sharing. I am so glad to hear that her EKG returned normal within 4 days and her motor and mental skills have improved and that her spells have ended. Would you be willing to share what brand the complex product is? We have families that often ask what brand to purchase.
I apologize for the delay. The brand is “Venatura”. It is a Turkish brand. We prefer it because it can be easily found in almost every pharmacy in our country Türkiye.
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Katie is just about 21 and about 105lbs. She has only been on about 13Mg of B5 for the last year, about half that since about 2015. We have just bumped that up in the last week or so to an additional 500mg a day. It has been just a short time and haven’t really seen anything yet.
@EmelYilmazGumus It is so encouraging to read this report. Many families have been sharing for awhile now how b vitamins have helped their children. It is very positive to have a medical provider also share these same findings.
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Bec is a 30 yo female who was diagnoses with TDD in April 24. Rebecca weighs 70kg. Her condition has been managed for many years with slow release glucose (cornstarch) bolus feeds and intermittent dextrose concentrate as required by metabolic circumstances. This protocol avoided major metabolic crisis. Following the Orlando Tango2 conference and the excellent papers presented by the researchers, detailing the biochemical pathways involved with the Tango2 protein deletion, Coenzyme A, Vitamin B5 and the link to Golgi Apparatus then mitochondrial function, Vitamin B5 was immediately introduced into her nutritional regime at 500mg daily over 8 doses. We immediatel noticed improvement in her strength and behaviours. She was happier and transporting herself further in her walking frame. Her physical therapists all commented on the improvement without knowing her regimen had altered. Subsequently her medical team recommended increasing B5 to 1000mg in a B complex and agreed with the importance of multple daily doses due to the water solubility of B5 and the short lifespan of CoA. We have not observed any dramatic change from the increase to 1000mg of B5 from 500mg.
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Sandy and Dave that is very interesting that there was a huge noticeable improvement when she started the 500mg of b5 but that going to 1000mg did not show a difference. It is information reported by families like this that will help our Tango2 community figure out the correct dosage of vitamins for our kids. Thank you for sharing!