Madopar LT: Be careful how you take your meds

Posted by jatonlouise @jatonlouise, Jul 3 10:09am

I have been taking Madopar LT for almost 2 years. It is abslutely wonderful and I think of it as my"Rescue ]" med. I always have it with me in case I run out of steam (or do something stupid like to turn my l-dopa pum back on after I take a shower. I'm my own worst enemy! The correct way to take Madopar LT is to put a table in a glass of water and stir until it dissolves. It's really simple and it's not like it takes a long time to dissolve so there's no rational reason to rush it. Unless you're an idot like me. I have grown so accustomed to my pump's beeps, reminding me that I only have two hours of meds in my pump so I'll need to refill it soon, that I often miss a warning. So, I was about 45 minutes late in responding, and starting to get the warning signs that portend the descent into the nasty place called OFFland. As soon as my husband finished refilling my pump, I went to the kitchen to take a Madopar LT. I put it in the glass, stirred it, drank it all-- or so I thought, but then noticed a decent chunk of it had not dissolved - maybe the size of a tictac, so I popped that in my mouth and crunched it down and about a milisecod later I felt as if I have taking a white-hot coal out of a grill somwhere and started crunching on that. Just insant, fierce pain. It was my good luck that among my nuermrous comorbidities , I have one that requires treatment using a thick cortizone salve. I took full advantage of my good fortune and in a reasonable amount of time, thngs calmed down.Nonetheless, I was still left with a very, very sore tongue and eating dinner was a virtual nightmare of pain. So, if you have some individual who has treated you unkindly, you might slip them an LT tablet under the pretense that it is a mint of some sort, and feign surprise that it was not. But whatever you do, do NOT chew one up yourself. And pass this hint on to your friends who may have PD.

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Lisa Lucier, Moderator | @lisalucier | Jul 8 2:43pm

Hi, @jatonlouise - thanks for the heads up on your experience taking levodopa benserazide (Madopar LT) that was not fully dissolved.

@lishensasha may have some familiarity with levodopa benserazide (Madopar LT), and @seniormed @cmdw2600 @hopeful33250 @dlc1953 @cctee @jflamini @windyh may be interested to hear about your experience taking levodopa benserazide (Madopar LT) and have some thoughts for you.

Has the fierce pain gone away, @jatonlouise? Have you encountered other PD patients who've experienced this reaction to a not fully dissolved levodopa benserazide (Madopar LT) dose?

Teresa, Volunteer Mentor | @hopeful33250 | Jul 8 4:08pm

In reply to @lisalucier "Hi, @jatonlouise - thanks for the heads up on your experience taking levodopa benserazide (Madopar LT)..." + (show)

Hi @jatonlouise,
This is interesting. I was not aware of this medication. I found some information about it on Drugs.com. Here is a link to that information, https://www.drugs.com/international/benserazide.html.

I'm glad to hear that it gives you relief from the "off'times."

jatonlouise | @jatonlouise | Jul 13 11:24am

In reply to @lisalucier "Hi, @jatonlouise - thanks for the heads up on your experience taking levodopa benserazide (Madopar LT)..." + (show)

This URL will take you to an explanaation of Madopar LT - what it is and how it's taken, (edhttps://www.medicinesfaq.com/brand/madopar-lt.

I'm pretty sure I won't be doing it again, If The Fierce pain that was like juggling a piece of white-hot charcoal didn't last very long. - maybe 5 - 10 minutes. The sore ache it left behind didn't trouble me unlesss I was eating or otherwise using my thoung. At rest, it wasnt' a problem, but I do rather enjoy staving off hunger and eating was very hard the rest of that day. After I treated it with my meds for Planus Lichen (a heavy salve of cortisone, and it became less worrisome after a day or two.

I haven't encountered any other PD patients as stupid as I am, but then I'm in a rather unique situation. I retired at 65, My husband and I then moved to Berlin, Germany, to be with our son and his wife and our gorgeous grandkids (a 4-year old boy and a 2 year old girl. And 4 years later, another boy came into our lives). . They took up a lot of out time because both the parents work, so we took care of the kids when they were sick and helped take them back and forth to school, or kept them when there was a school holiday. So we didn't have much time or energy to pursue making friends . Normally when people move, they meet people at work, or at church, or in the neighborhood, but we don't work and we do't do church, so that avenue wouldn't work for us. We have made a handful of friends, though, and fortunately, most of them are at least 20 years younger than we are because by the time you reach our age - 80 - lots of your childhood friends are older than dirt like us, and many seem to think that they can just go ahead and die whenever they please, and leave us to miss them. So I'm the only one in our crowd to have PD so I don't know it anyone else has had this problem of not. I am pretty sure that this experiences is a one of a kind thing for anyone, because it really. really is painful and I doubt that even the most cognitivelly impaired PD patient would ver forget that pain and would remember it enough to not repeat the Experience. If the folks you listed above have any question, I'd be happy to answer them. But I've only barely mastered logging in, much less doing the private messaging thing, so if they want to contact m.they're free to do so. (After all, I'm 80, so every hour I spend in a rabbithole trying to figure out how in the feline excrement some 22-year-old computer Geek decided to build this tool in a way that may make sense to him but not to me, it becomes a greater percentage of my remaining life, so I'm not eager to spend time in such non-productive pursuits. 😉

I don't think it will be a problem if I don't try to crunch it again. I've been using it to give me an extra push from sleep to awake in the morning (I turn my pump down to low when sleeping, so sometimes I need a bit stronger wakeup than a bit of Folger's in my cup to return me to the world of the lucid in the morning. I also use it as a rescue - if I have done somsething equally stupid (such as replacing the battery in my pump but forgetting to turn the pump back ON after wards (Which is the ONLY time I have experienced ANY OFF time since I've been on the pump. 16 months! , Forgetting to turn it back on after a shower is another User Error induced OFF . The trials found that patients with the pump had 2 hours less OFF time every day than the patients taking pills. Even that would have been an improvement over my pre-diagnosis life. But trulyl to have none at all (except when I'm careless -within an hour or so ,I'm a violently shivering mass of protoplasm. My carelessness happens- partly because sometimes I forget .I'm sick. I am always a tad weak and have limited energy, but compared to my life pre-diagnosis,I'm a combination of Wonderwoman and Super Girl.