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Lfarhood

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Oct 22, 2020
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PALS
Diagnosis
10/2020
Country
US
State
MI
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Greenville
I was just diagnosed with ALS last week. I have a question. How do I get my prescription drugs transferred to liquids?

i currently have a lot of difficulty swallowing and my feeding tube keeps getting clogged up when we try to put medications mixed with water into it.

i was diagnosed with MS in April of 2000.
i had what we thought was an MS exasperation in March of 2020 however the Steroids didn’t do the job and I was left with speech difficulty, difficulty swallowing, week muscles in my right leg and arm and severe weight loss.
i we put on a feeding tube in October of 2020 at 90 lbs. I have gone through three rounds of physical and occupational therapy plus two rounds of speech therapy without any improvement. I have twitching in my legs and everything sees to be going very quickly.
I wasn’t pleased with my new neurologist after my current neurologist retired so I changed to someone who is supposed to be tops in the field of MS. After he saw me for the first time he told me he thought that something else was going on. He sent me to see a Neuromuscular Neurologist who did a bunch of blood tests on me as well as a CT of my head and neck and an EMG. She gave me the diagnosis on Wednesday of last week.. to say I was shocked would be an under statement.

i had worked for almost 7 years after I was diagnosed with MS and I had always hoped that someday I would be able to go back. Even though my last Neurologist had told me that my MS had progressed to Secondary Progressive, there was always hope. Now I feel vey defeated. If anyone can give me any guidance as to how to get my medications turned into liquids I would appreciate it.
 

nona

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Diagnosis
02/2015
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US
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NH
City
NEW LONDON
Your journey has been rough, I'm sorry. I take all of my meds in water through my feeding tube. It works best when they are pushed through with a syringe and at least 20 cc of water. Occasionally it clogs, but that is usually when I'm taking something like Tylenol and it hasn't been crushed and soaked enough. None of my ALS meds is available in liquid form. You can ask your pharmacist and doctor to figure out a substitute, and confirm that the meds you're taking are safe to crush.
 

lgelb

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Very sorry to hear about the addition of ALS to your burden, Greenville.

Many meds can be crushed and dissolved in warm water for use in a feeding tube, so long as they are not on the "do not crush" list and others are available as liquids. You can look up all the dosage forms at drugs.com.

Nona, Tylenol is available as a liquid (you can convert children's dosing to adult quantities), as is riluzole, though I'm not sure which meds you are referring to.

Best,
Laurie
 

JimInVA

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I got a mortar and pestle set and used that to crush up the pills when we first started. Once crushed, I'd mix them into the water (or whatever liquid was being used). Later, I found that if I put a small amount of water into the measuring cup (I used a 2 cup glass one) and then heated for about 30 seconds in the microwave, that water became very hot. I'd then break up the pills by hand and drop the smaller pieces into that very hot water. I'd use the pestle when necessary to swish them around... but for the most part they all dissolved easily in the hot water. I would then mix in some cold liquid before pouring into the feeding tube. That process prevented the clogging that you described and which we also had issues with early on. I hope our experience helps you find that process that works best for you.

My best...

Jim
 

affected

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I also used quite warm, but not hot nor boiling water to mix with crush pills. I have a small glass pestle that is great for pills.
Remember don't crush the pills, mix with water and then microwave that mixture. If you microwave, do as Jim describes and just heat the water, then mix the pills in after.

I also found that mixing in warmed water, then let it sit for 5 -10 minutes, then mix again gave a really good result.

In the long term if you can get any of your meds as liquid that is far better.
 
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