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Difficulty swallowing meds: Resorted to DIY pharmaceutical compounding
I was irradiated for cancer of the nasopharynx in the mid-1970s. Over the years it has gotten increasingly difficult for me to swallow food and pills because of the long-term damage from the radiation on my throat and mouth tissues. Food and pills get stuck in my throat and I have to cough them up to get them loose and then try to swallow again. A lot of food ends up coming out my nose, sometimes. Ick. The dysphagia is aggravated by the fact that I also have a condition called trismus, which means that the radiation made it impossible for me to open my mouth more than a couple centimeters at the widest. Also my teeth are in horrible shape due to xerostoma and no dental work can be done to fix that because of the radiation damage and the risk of osteoradionecrosis as well as dentists or oral surgeons can't get access to my mouth because I can't open it very wide.
Anyway, I've had to take a bunch of big antibiotic pills recently and the only way I can swallow them is to grind them up and put the powder in something like pudding or yogurt and gulp it down as fast as possible so the taste doesn't stay in my mouth.
I know some pharmacies will do "compounding" where they take pills or powders and mix them into flavored liquids for patients who can't swallow pills, tablets or capsules, but I am hard of hearing to the point that most people would consider me deaf (not Deaf as I don't use ASL) and I hate dealing with pharmacy bureaucracies and insurance company drones, so I looked into doing my own compounding.
Right now I'm about halfway through a 10-day course of Keflex, twice a day. It comes in gelatin capsules and is already finely powdered, so it does not need grinding. I'm getting a mortar and pestle for the pills that do need to be ground up. I've been using a twist-action pill crusher but sometimes pill crushers leave too many chunks of intact pill mixed with the powder. These taste awful and they can get stuck in my throat.
A company called HUMCO makes a "suspension vehicle" called Flavor Plus, which is like a thick, bland-tasting syrup that holds solids (powders) that won't dissolve in water. So I got a bottle of Flavor Plus as well as another HUMCO product called Flavor Sweet, which adds a fruity taste to the mixture of Flavor Plus and the medicine.
To prepare a dose, I empty a Keflex capsule into a medium-size plastic Solo cup (about 4 inches tall). Then I get a 30 cc dosage cup from a bottle of OTC cough syrup and fill it with a 50/50 mix of the suspension vehicle and the flavor syrup. I pour the 30 cc of goopy liquid into the Solo cup with the powder from the Keflex capsule and then I mix it all up.
You may not be able to get a good mix just stirring with a spoon or fork. I use a cheap, battery powered "milk frother" that I bought recently for other kitchen purposes, but it does a great job of uniformly distributing all the powder in the liquid. It turns it into a pink foam that is easy for me to swallow and the taste is tolerable.
I'm not posting this as an endorsement of the products I'm using, and I'm not urging anyone to duplicate my procedures. I am a complete beginner when it comes to converting solid pills into liquid syrups, so I expect I will be learning a lot of lessons as I make rookie mistakes in the future. I am hoping to raise general awareness of the problem of dysphagia in patients who were radiated for head or neck cancers and other long-term side effects of radiation in cancer survivors. I was irradiated 45 years ago, and for most of that time the side effects were easy enough to manage, but over the past few years they have really caught up with me. I know I'm not the only surviving cancer patient from the '70s who is dealing with these issues in 2020, but also there are probably not very many of us so we are not very visible to the medical industry behemoth.
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@ltecato Thanks, that could be good information for anyone with the same difficulties. As long as people check with their doctors about doing this then I would think it would be OK. We do have a compounding pharmacy right down the street so that's not a big problem where I live but I think compounding pharmacies are getting pretty rare.
JK
Hi @ltecato, I was concerned that there might be unknown negative consequences to self "compounding" pills and medications. So I showed your post to a Mayo Clinic pharmacist. She offered this response:
"Difficulty swallowing, also known as dysphagia, can be a barrier to taking medication as prescribed. It can sometimes cause choking and regurgitation or even pneumonia.
Sometimes, swallowing exercises can improve function of the esophageal muscle. Some to try are listed on the NAPA (Neurological and Physical Abilitation) Center website here https://napacenter.org/swallow-strengthening-exercises/.
Not all pills can be made into liquid formulations by opening capsules and crushing tablets. It can sometimes interfere with the safety and efficacy of the medication. For example, delayed or extended-release medications when crushed or opened can cause dangerously high doses to be delivered quickly then reduced below therapeutic levels. Some pills have a protective coating to safeguard your mouth and throat against exposure. Some medications are considered hazardous and require special handling procedures.
Keflex is able to be opened and mixed with applesauce or other substances and administered that way. It is also available as a pre-mixed liquid suspension. I’m not sure how hot your milk frother gets but exposure to extreme temperatures can interfere with the effects of some medications as well.
I want to urge patients with dysphagia to communicate their needs to their care providers. Prescribers should consider patients’ needs when selecting from available dosage forms. A friendly reminder to your care provider when discussing new medications can help ensure providers are aware of your needs. Many medications are available in liquid form, in disintegrating tablets or are able to be crushed or opened as you mentioned. If the pharmacy is aware of your concerns they can also help to make sure you have appropriate instructions for medication administration."
@ltecato, did you know that Keflex is available as a pre-mixed liquid suspension? Have you mentioned your difficulty in swallowing medications to your physician and pharmacist to see if your medications are available in alternate forms?
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3 ReactionsI'm so glad for this post,@colleenyoung. Please thank the pharmacist who contributed information. As one who has a paralyzed vocal cord and some atrophy in both vocal cords, I always mention my swallowing problems to doctors when they prescribe a new med and to technicians if they are going to perform a test that involves putting any type of scope down my throat. There are ways to take meds safely and effectively and to perform procedures. however, the medical team must know of the problem before they begin.
I've done a lot of speech therapy (which will help with swallowing difficulties) but I'm also going to look at the website that the pharmacist provided with exercises to strengthen the swallowing muscles, NAPA (Neurological and Physical Abilitation) Center website here https://napacenter.org/swallow-strengthening-exercises/.
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6 ReactionsMost of my meds are unavailable as liquids. Too bad it is so costly to have your meds made as a liquid vs. pills. One of my 4 oz. liquid meds cost $400.
Hi and thank you for this post. My husband did chemo and radiation in 2009 and then got a growth on his jaw bone in 2019 then had a mandiblectomy in 2020. His experience is EXACTLY as you described, and it is getting harder and harder to swallow. At this point he uses a 5ml syringe for everything. I'm hoping to find something to help with the mucus/ropiness that has him constantly trying to clear his throat. It's getting worse every year. He is 78 and has a really good grasp on his food intake and diet etc. But he feels like his throat is closing and he just can't clear it and breathe easily. Have you found anything to help the mucus/ropiness in the throat?
I'm a 62 year guy that could not take pills. My parents knew I'd never be an abuser of pills something mentally. But when I got to my 50s pills were more common than I like so I had to figure out way to take them, so here is an experiment to try. Take 1 small pill put in you mouth take a sip of liquid tilt your head back and swallow. Liquid is gone so is pill. More practice makes it easier. I drive a school bus and some of my kids have said they cant swallow pills and I tell them what I just wrote and they all seem to be able to take pills with no problems now, good luck, I hope this helps.
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2 ReactionsThank you for the reply. He did that until the mandiblectomy. Sadly, now everything is ground up. He really has trouble with the mucus/ropieness in his throat. He constantly tries to clear it, but it is thick and hard to break up and get out. He says it feels like his throat is closing. Thanks anyway.
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1 ReactionHi @charleejacobs, I wanted to check in and see how your husband is doing. Is your husband finished with treatment? Has he had reconstruction of his mandible? How are YOU doing?
I invite you to join the helpful discussions in the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/
Hi Colleen,
Yes, thank you for reaching out. Joe did checmo and radiation back in 2009/10 and then had a Mandiblectomy in 2020 due to an new cancer growth on his lower. He refused further chemo and radiation. Joe's biggest issue is the ropey flem in his throat. It's hard to clear and breathe. No one seems to have any recommendations. He grinds all meds, including Mucinex and takes them with coffee or his daily dose of CQ10.
Hello,
I know the struggle well!
I find that nearly hot water first thing in the morning will help loosen the mucus.
I do several rounds of swishing to clear my mouth and then several rounds of sipping, swallowing and hacking up mucus and then my brushing regimen.
I repeat this throughout the day as needed.
Hope this helps!
MOJO
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