Riluzole and urine

MupstateNY

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Does Riluzole give anyone smelly urine? I'm trying to figure out what's causing the unpleasant smell and what to do about it. By the way I drink a lot of water because my BUN was a little high in several blood tests, so I made a successful effort to increase my water intake.
 

Smjacobsdmd

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You could be right. Not as bad as asparagus but I was wondering, but I have so many new Rx and OTC meds, many new in the last 3 months like the Riluzole: Tamsulosin, dutesteride, for BPH, acetyl l-carnitine and TUDCA and curcurmin plus vitamin D, B2 and magnesium and probiotics. So figuring an odd smell or upset stomach is not easy.
 

Nikki J

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I think some people get it from tudca and also curcurmin. my friend whp took compounded amx0035 said there was a definite smell I haven’t heard of it from riluzole alone but who knows? Everyone is different

re the curcurmin theracurmin was used in Bedlack’s trial and also in an AD one. It is a more bioavailable form and what my clinic recommended
 

KevinM

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I couldn’t tell one way or the other about changes in the smell, since I have a bowl-bladder fistula that makes my pee, well let’s just say exceedingly unpleasant. I had decided against a very major, complicated surgery to close it given my ALS diagnosis and after consulting with one of the the best GI surgeons in the state. Thankfully I’ve been able to manage it just fine with little inconvenience or infections, but normal smelling pee, especially in the morning, is not in the cards.

On the more general topic of supplements, I was like most of us in that I loaded up on every supplement possible for the first year or so after diagnosis, mainly because we need to feel like we are doing something and this seems at first glance to be a “can’t hurt, might help” kind of issue. Plus certain supplements might be needed if your blood work shows deficiencies. I have read about some pALS taking as many as fifty types each day.

But as Laurie, Nikki, and others have said, any decisions about the type and number need to be carefully considered because of the metabolic energy needed to absorb and process them and the possible side effects/interactions. I went from taking a dozen or so different types at first to 3-4 now.

Theracurmin is still one of them, and my neurologist also agreed that it is worth taking. Acetyl L-carnitine and maybe a couple of others are also suggested by some neurologists.

I now have a paper grocery bag full of supplements I no longer use, and I don’t notice any changes In my progression.
 

MupstateNY

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Thanks, all.

Kevin, I'm about 10 days into my dx now, and yesterday and today I actually thinned out my supplements. I'm still taking Calcium, Magnesium and vit D, because I have osteoporosis and severe inability to digest dairy. Also, I'm still taking a lightweight multivitamin. That's it! I have tentatively eliminated my fish oil (for heart health -- but my heart is fine), and my vitamin B12, which I've been taking because I read that a B12 deficiency can mimic ALS. (It didn't help me.)

I looked online at special underwear for catching dribbles and eliminating odor, and various articles that compare the different brands, but they were pretty expensive, and with my super-sensitive skin, I'm nervous about breaking out in a rash with some new garment that I'm not familiar with. For example, I don't know if I can tolerate garments made of bamboo! I have been limiting myself to cotton during the last year and that has been very helpful. So I got a crazy idea, I'd like to wrap a strip of cotton flannel around the center piece of the underwear and then if necessary, replace.

I guess later on I will need to find something for more than little dribbles, but Rome wasn't built in a day.

Where else but here could I discuss this comfortably with other people?
 

MupstateNY

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Oh, oh! I just saw something about a bidet. We lived in France for a couple years and there was a bidet in the bathroom of course. That is what I need! Too bad my bathroom is too small to fit one in. Unless we eliminate the closet... food for thought.
 

Nikki J

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You can install a bidet as part of the toilet. It doesn’t have to be a separate fixture as you had in France. Put bidet in the search bar there are lots of mentions here.
 

Tomswife

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Yes. We got our bidet on Amazon. It is an electric bidet toilet seat. You put a split on the incoming water to the toilet to bring water to the bidet hose.
I think I saw one with wifi. :)
 

lisa g

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A bidet is a lifesaver. If you also have a Costco or Sam's Club membership they have run specials on them. I bought mine through Costco that has alot of features.
 

affected

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Bidet is one of the easiest and best things you can start with.
 

MupstateNY

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I ended up buying the LUXE Bidet NEO 320 Plus. Now if I could just get my spouse to install it for me....

Thanks, all.
 
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