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Has anyone else been reading up on this? I’d like to know more
B3 Nicotinamide Riboside studies - Multiple System A...
B3 Nicotinamide Riboside studies
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Tbird0112
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Hello Tbird. This is completely new to us. Are you a member of the UK's MSA Trust - it could well be worth asking them and reporting back here as I'm sure we would all love to know if it makes a difference. Even if you live outside the UK you can email to them - the link can be found in an earlier post of mine on this site.
Good luck, Take care, Ian
My husband was prescribed nicotinamide for his Bullous Pemphygoid which started 3 years after his MSA. The best effect it has had was the initial total resolving of his leg swelling. Stopped taking the diuretics completely. Sadly it didn’t really contain the skin problem so the dermatologist stopped prescribing it so I have bought it from the internet. He takes 500mg daily. His MSA is progressing but slowly except for those bad patches caused by infections which always cause a drop in ability but then he gets back to a steady plateau. I don’t know what overall effect is but I just know that we don’t want to try without it!!!
Diane
Thank you for responding Diane! I know we can only try to treat the symptoms of this aweful desease one by one. But if it has an effect on one symptom, that’s a start and a relief. I’m still waiting to hear back from the neurologist before going ahead. Swelling, slowing of cell degeneration, lower sugar any of these would be nice. 🤞even if temporary.
Spoke with the neurologist and she says that it’s too early to know how this will work long term. But she says there’s no information that indicates it would hurt him. She wants us to make the call. Discuss it and decide if we want to add this supplement. We will. And the doctors will need to know if the addition to his meds, just in case contraindications begin to manifest.
Hello Tbird. I wonder if your husband has started this supplement yet and what your findings have been. Jackie has started to take some sourced from Amazon (less than £9 and so very reasonable). When Jax was first diagnosed we said we wouldn't 'chase rainbows' and yet when there is a supplement which appears to be doing some good for some people, it's probably worth a try. We will let you know if it appears to help but I suspect as with so many things with MSA, one doesn't know if it's slowing down the pace of the condition or not as everyone has a journey of their own.
Take care, Ian
