Riluzole storage needs 68-77° F

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LittleKnight

LittleKnight

Member
Joined
Jun 21, 2015
Messages
17
Reason
PALS
Diagnosis
04/2015
Country
US
State
New York
City
Tarrytown
How does everyone store their Riluzole (Rilutek)? It has a pretty narrow temperature range for storage, just 68-77° Fahrenheit. I don't know what I'm going to do. It's summertime in NY now and the weather can get very hot and humid... it's been nice and cool through the present day but that will change very soon. I don't have air conditioning, just fans, and on some summer days (in the 90s) there is no chance that a window AC will get the place down to 77 anyway. (I'm in an apartment, so central AC is not possible.) I've seen professional medical storage units for sale, but they're around $2,000 – way too expensive for me! Does anyone have any suggestions?
 
Mine just sits in my 80 degree bathroom.

Hell, you only get a month worth, how bad can they get?
 
Like Greg, I can't think of any rx I've ever seen that cratered from a month's storage in a dark cupboard w/ temps in the 80s, though I do think for your own comfort you should make sure your fans are sufficient and in the right spots. Just open the bottle, take out the med and close the bottle securely. The labeling is based on risk management, not any controlled trials above 77.
 
But, Greg, the bathroom if you run showers or baths there, is not the best place. Got a high kitchen cupboard?
 
Humidity isn't really a problem here in the high desert. 8^)
 
There aren't many things that help with ALS. What we have, we should use, and we should use them according to the instructions. If they say to keep it in that temperature range, I think we should. My pharmacist tells me that big temperature changes can indeed ruin pills, and in a lot shorter time than a month; so can high humidity (like repeated shower steam). They can be made impotent without having any visible change.
My place gets overheated really fast, so for now I'm storing my pills bottle in the bottom of a dark closet (because heat rises) with a little desk fan ready to run on it whenever the weather reaches up near 80. I wish I had a better plan, and I don't know what to do when the weather gets really hot.
 
> big temperature changes

Which begs the question: what is considered big?

My suspicion would be that a big change would be, for example, going from a heated warehouse to a freezing truck.

But that is IMHO.
 
The fan is ill-advised, because the bottle doesn't have sweat glands.
Blowing air over the pills merely ensures that the pills and the surrounded air reach the same temperature.
 
Knight,

Not to be flip, Knight, but you're putting a lot on riluzole. It's not all that, alas. Diet, massage, BiPAP, kludged "comfort aids," the right bed, the right wheelchair and range of motion exercises, just to name a few, are going to have a much greater impact on your quality of life for a considerably longer period.

I agree w/ Mike that redistributing the heat/humidity isn't going to help. We lived in Houston for decades, Larry took drugs to keep his aorta from blowing out, and we didn't have central air there most of the time. Our window units were never where the drugs were. Since his pulse was kept very low by design, we would have known if the drugs were compromised. Riluzole is not inherently less stable than other orals from any research I have seen. And of course billions around the world don't have even window units.

Most often, I portioned out Larry's drugs a week or month in advance in the kind of rectangular containers that have 4 compartments per day, and rest in their own month-at-a-time stand. That way, you aren't opening and closing the bottle as often overall and you're only opening the compartment with the tablet you're about to take at the last minute.

You do want to protect the tabs from light but riluzole is otherwise labeled in the cautious UK with a 3-yr shelf life.

Humidity is more of a threat than heat for solid orals generally, which is why [deserts notwithstanding:)] I wouldn't use a bathroom, but rather a cupboard on the other side of the kitchen from water (including, in our case, a 24/7 humidifier that points the other way).

Happy fireworks!
 
Call me crazy, but I'm taking my Riluzole very seriously. It's the only arrow in the quiver, as far as medicine goes, and every doctor I've met has insisted I take it. I'm not cutting corners with my diet or exercise, so I'm not going to take any chances with this either. There are miniature wine coolers available which will keep things at a stable temperature of 68°, and I'm getting one. At a hundred bucks or so, they cost less than the co-pay of a single bottle of the drug.
 
I don't blame you Knight. I beieve if you respond to riluzole it can make a big difference especially early in the game. Not everyone has the same response but as you say it is all we have for prescriptions. I have not gone to the extremes you are but I do stay home on the days my riluzole is scheduled for delivery so it will not sit out in weather and I keep it in a cupboard in a bedroom so no extra humidity.
I am sure you know the food restrictions. Did they tell you the culprit food is fat so if you must eat in the 3 hour window non fat food is ok
 
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I do make sure to fully respect the 3-hour window. I have a breakfast between 9 and and 10, take the Riluzole at 12 or 12:30, and don't eat again until an hour later. Then I eat as much as I can until 10pm, and take my 2nd dose right before bed at midnight. It's really pretty easy to stick with the window, because I have trouble eating; I get anxious during meals, and they feel like a chore :( But I do know that nutrition is critical, so the efforts simply must be made.
 
Two thoughts. Are you considering a feeding tube? In terms of doing everything we can getting it early before you start to lose weight is really important. My sister waited and freely admits that it was a mistake. Have you researched nuedexta? It has an indication for The emotional lability BUT there are PALS who say it temporarily helped their swallow. I think Neil says he got 6 months improvement on it. If you want to try it ( I will want to when I start with swallowing issues) your insurance will probably only pay if you also have the emotional lability. ( excessive laughing and crying)
My sister when she could swallow said if she could only have one drug nuedexta would be it ( over riluzole and baclofen)
 
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