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Work arounds for the bitter taste of phenylbutryate?
hi So here I am, a new ALS (bulbar) patient not likely to do well with capsules and tablets for much longer. And I am now facing the challenge of dissolving and ingesting my PB cocktail twice daily. Please tell me successful tactics for overcoming the challenge of its very bitter taste. Thanks DavidW
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3 Replies
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David, I’m not familiar with taking phenylbutyrate – – but with my own swallowing issues, capsules and pills are difficult to swallow alone. I’ve found that taking a bite of soft cheese, chewing, and then, just before swallowing pop the capsule in my mouth and swallow the whole lot. The chewing motion gives my throat time plus signaling that a swallow is coming. And, the cheese adds the right amount of “slip” so my throat doesn’t know any better.
Hopes this helps you.
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David,
I’ve been taking the sodium pb and tudca capsules for almost a month now. The tudca is in capsules so no problem with the taste of those but the powdered sodium pb is awful. It has a very strong salty metallic taste and leaves a mild burn in the back of my throat. I tried mixing with a couple different fruit juices but these didn’t mask the taste enough, barely able to drink it. My wife got to work using her blender and I’m happy to report success. Using a combination of banana, Nutella, ice cream, creamy peanut butter and either milk or ensure she has been able to whip up very palatable if not downright tasty drinks. Sometimes I pick up a faint after taste of the sodium pb but it is easily drinkable. Just experiment with ratios of whatever above ingredients you prefer the taste of and you’ll be fine. In a few days I’ll be doubling dosage and reaching the final dose strength and that’ll mean two drinks a day. As a nice side effect these drinks also maintains if not increases my body weight which is what my dietician encourages me to do anyway. So don’t panic, it’s doable. Good luck my friend on your journey.
Len S.
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As a follow-up, I found a less burdensome recipe: small curd cottage cheese. I mix the 3 gm PB with 1/2 of a small carton of cottage cheese (~135 ml). The nice benefit of this monotonous regimen is that you get 13 gram protein twice daily, which makes achieving the protein intake goals easier to achieve. As to the Tudca, maple syrup is the easiest vehicle: two scoops of Tudca into ~10 ml water ( 2 tspn) dissolves the powder (a little smashing of tiny clumps speeds the process), then add ~5 ml of maple syrup (or more to taste) and mix again. Take a sip of water when done or even while drinking.
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Where did get your phenylbutryate and tudca? I have Tudca pills from Amazon but not the sodium PB.
Thanks
Laurel
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