Riluzole and itching

[Mary2]

My husband has been complaining of itching for weeks now. There are places where he does have a flat redness and there are places where he itches without redness. Now his face has this flat redness. Does Riluzole cause itchiness? Can the dose be lowered for Riluzole. I will ask Emory through the patient portal but was wondering if anyone had experience with an allergic reaction to Riluzole?

 

[lgelb]

Itching is a known side effect, and redness is fairly common for other reasons in PALS. But if he's been on the drug less than a year, his liver function should be checked every 3 months and even if it has been, I'd check in with his doc. I would also try a different cleaning routine for the itchy areas. Has the humidity changed a lot where you are? I assume you haven't switched detergent, soap, or anything like that.

 

[Tomswife]

Tom has been on Riluzole since 8.18.22. He does not have side effects. He does have the flat red areas around where his neck meets his chest. But they are not itchy.

 

[Firefighter58]

No redness or itching for 8 years

 

[affected]

My husband started noticing strange itchy patches before his bulbar symptoms started. They could not be seen. By the time he was diagnosed they were spreading and noticeably dry and could get red.
He never took riluzole for more than a couple of weeks and decided not to take it at all.

 

[MupstateNY]

I read that "Burning, crawling, itching, numbness, prickling, 'pins and needles', or tingling feelings" are one of the most common side effects of Riluzole. Now, I've always been an itchy sort of person, and here are some things that have helped me at different points in time:

• Extra rinse for my laundry
• A capful of Calgon in the rinse, to help remove soap residue
• Special laundry soap for sensitive skin (e.g. Dreft, the products marketed for babies' clothes, a liquid I find at the health food store, etc.)
• Patting dry instead of rubbing
• Unscented fabric softener when I'm not going to use the dryer, and unscented dryer sheets when I use the dryer
• Body lotion that has "eczema" on the label (also unscented) -- my favorite is Gold Bond or Aveeno as a close second, used twice a day, especially after bathing
• Avoiding the use of soap, and instead the liquid thing that's similar to soap, sometimes it has "eczema" on the bottle -- usually I buy Aveeno or the house brand equivalent
• Soaking in a tub, or the affected body part in some kind of dishpan or tub, using warm water (not too hot) with half a packet of the Aveeno bath powder, or the house brand equivalent (once a day is good, for maybe half an hour)
• Turning up the heat for a while so I can expose the affected areas to air circulation (without clothing) for a few hours a day (when itching is especially bad, this is the thing that helps me recover more than anything else)
• Humidifying the house to 35-40% relative humidity (I bought a cheap hygrometer) -- this is one of the keys, for me
• Aveeno anti-itch cream
• Over the counter 1% hydrocortisone cream or ointment
• Calamine lotion
• Messy but effective: make a paste of corn starch or in a pinch, even flour can be used, and pat on the itchiest spots -- spread a small top sheet out first on the surface you are going to lie or sit on to catch the crumbs as it dries
• Cold pack wrapped in a dishtowel (apply for maybe 5 minutes, then remove until itching comes back)
• Dip affected hand or arm in a bucket of cold water, which can be kept next to the bed
• Triamcinolone cream (this requires a prescription)
• Currently I cannot wear synthetic clothing (this started before I began taking Riluzole four days ago), and if I wear cotton, it has to be very soft cotton, such as long johns (traditional type, available at the W big box store, for example, in the hunting supplies aisle)
• I must currently avoid any elastic touching my skin

But I am an extreme case -- I doubt you guys would need to do everything I outlined!

I am not a doctor or anything remotely close, and cannot say whether any of the above would be appropriate or helpful for someone else.

 

[Tomswife]

Mupstateny . Great post.

 

[Mary2]

MupStateNY Thank you for such a great post! These are some wonderful ideas. I read them to my husband and we will try a couple of them. Some we already do, but other ideas we will try. Thank you again. We appreciate it very much!

 

[MupstateNY]

I hope something helps. Itching is no fun. Note, I have done telemed with primary and dermatologist and that makes things easier. In principle a primary can do simple skin things.

 

[RKeller]

I have been on Riluzole for a month. Taking one pill every 12 hours. I started having eye pain. Every time I blinked it would hurt. My parents are providing my daily care so my mom would put drops in my eyes and they would provide minor relief. Finally after a week of this I contacted my doctor and told him. He instructed me to reduce my dosage to once a day. Two days later I had no eye pain. He said the medication was drying my eyes out. He was right.

 

[Mary2]

Thanks RKeller. My PALS and I were wondering if he could take Riluzole once a day. We are hoping this is what the doctor suggests. We cut back to once a day already on our own and the itching has improved.

 

[Firefighter58]

I have been taking it for 8 years once a day

 

[Tomswife]

Pals takes 2x day, 50 mg. Since 8/18/22. No itching.