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mexiletine frustration

I wish this process were a little more transparent. Every pharmacy I've spoken to has told me they have some in stock. I ask them if they're sure and try to ensure they know it's not available for order until March. I tell them I've been through this already...

By the end of the day I inevitably get a call back telling me their inventory was off. I was so close again today and just now I got the call for the millionth time, they ask me if I was aware it was on back order. Um...

I haven't felt this sluggish and unmotivated in 3 years - this was my first day off the meds. I had to stay home from work. I could barely get out of bed. It explains a lot of my old feelings and behavior for me. Almost fell a couple times forgetting to be careful. I am sure it's going to take some time to get accustomed to moving more slowly, but I feel toyed with. Not sure what to do...is there another med I should pitch to my specialist? I've taken dilantin, procainamide and quinine with almost no result. Mexilitine works well, besides the massive anxiety. I take 200mg 5x a day.

Thanks for letting me vent, this has been a hard day. I really appreciate this forum.

Type of Myotonia: Thomsens

Country: US - pdx

Re: mexiletine frustration

I emailed the Canadian pharmacy I mentioned (universaldrugstore.com) to see if they have a reliable supply. I'll let you know what they say, but you wouldn't be able to get insurance coverage and it would be $200 a month at the dosage you're taking.

If you do find a supply and you've been off of it for a while, you probably need to titrate the dose like you did initially. 900 mg per day is usually the maximum dose for MC and sometimes it becomes ineffective after a while, so maybe it will actually be helpful to take a break now and then and let your body "reset" the response.

Have you tried Diamox (acetazolamide)? That works well for some people and might get you through the blackout :-)

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: mexiletine frustration

You are incredible! Thank you so much. That is a chunk of change, but I would definitely have to consider it if the turnaround time will be reasonable. I'd think about selling my arm, I think.

I've never tried Diamox - but I will see what I can do to try it for the interim, at least. My MDA clinic is difficult to get messages through to, it took them 2 weeks to answer back to my pharmacy to change my dosage when the pharmacist thought it was an option to order the higher mexiletine dosage.

Thanks so much for your help! and thanks for doing such a great job with this forum.

Type of Myotonia: Thomsens

Country: US - pdx

Re: mexiletine frustration

I got some! The Dr bumped me to 250mg 4x a day. I'm waiting for the first pill to kick in now. I just now got a phone call in response to a message I left last week, they were just getting around to it, I think.

I can't believe the hassle this has been. The pharmacy I usually go through did manage somehow to fill my prescription and didn't happen to call me. So the hospital pharmacy had to cancel their order and bring it back to them this morning...so utterly confusing.

But I will be doing the happy dance when I can move without the pain and weakness of the last few days. It was as if taking the meds for 3 years made me forget how tough it once was to do basic things. Exhausting and painful. Can't believe I've managed to do the things I can now. I will gladly put up with some anxiety and heartburn side effects if I can safely walk my dog and ride a bike.

My heart goes out to everyone on this forum, I so appreciate that other people *do* know what I've been through. I was mortified this morning when I had to cross a big open room full of people. I'm still having to throw my arm across a table and untie my tongue to answer the phone at work, but it doesn't hurt like it did yesterday.

Type of Myotonia: Thomsens

Country: US - Portland OR

Re: mexiletine frustration

That's great! I hope they keep increasing the supply so no one has to do without it again.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: mexiletine frustration

Good for you; I know EXACTLY how you feel. Hopefully this shortage is temporary. Good luck.

Type of Myotonia: Thomsens

Country: USA, NJ

Re: mexiletine frustration

They stopped making the 200mg of mexiletine.
I don't want to pay the price for the 250mg.
Anything cheaper to take?

Country: u.s.

Re: mexiletine frustration

The other medications prescribed for MC would be Diamox (acetazolamide), Tegretol (carbamazepine), Dilantin (phenytoin) and Qualaquin (quinine sulfate). In the US I believe the cheapest would be Diamox. It used to be quinine but the FDA took care of that by requiring new certification which cost a fortune.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: mexiletine frustration

I am writing this as the parent of a 16 yr old son who was diagnosed with MC 1 1/2 years ago. He has been taking mexiletine ever since. He started on 150mg up to 4 times daily. Then 150mg was discontinued so he was upped to 200mg with no problems. Actually he was happier than ever because the medicine has allowed him to play very competitively in hockey with no stiffness... Now 200mg has been discontinued and he's been upped to 250mg and is not handling this increase very well. He's extremely nauseous, dizzy, trembling. At first we thought it was the flu. We took him to the dr. who recommended an MRI to make sure nothing else was causing the dizziness. It was normal. So it leads us to believe it's the rx. He is going to try to eat more and space the doses out more. Would one of the other medications that was mentioned in previous posts be possibly a better match for an active 16 year old?

Type of Myotonia: mild MC

Country: US

Re: mexiletine frustration

Hi Jean:

I'm curious, why did they keep upping it?

Type of Myotonia: Becker

Country: USA

Re: mexiletine frustration

Teva Pharmaceutical makes both 150 and 200 mg capsules. You might need to call around to find a pharmacy that can get it. I would definitely recommend reducing the dose as soon as possible.

It's also important for your son to avoid caffeine in soft drinks and other beverages, and be sure to talk to your doctor if he uses an inhaler for asthma. Both of these can interact with mexiletine.

This has been the most effective medication for myotonia but has some potentially dangerous side effects and should be monitored closely. Other possible drugs would be Dilantin, Tegretol, Diamox and Quinine Sulfate. Each person responds differently so it can take some experimenting to find the best medication.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: mexiletine frustration

Thank you so much for the information!! My pharmacy told me that the manufacturer has discontinued the 150mg and 200mg which is why Joe is now on 250mg. If you believe the lower doses are still available I will definitely shop around. And also thank you for telling us about avoiding caffeine. Although he drinks mostly gatorade or water, he does like an occasional coke, which he will now stop drinking. Something else that has probably affected him is eating too little when taking the pills, causing him to feel sick, which leads him to eat less... it's a vicious circle.

Type of Myotonia: mild MC/Becker's

Country: US

Re: mexiletine frustration

There were three suppliers for Mexitil in the US and two have quit manufacturing. So if your pharmacy was ordering from Boehringer or Watson it won't be available (they may have had some supply of 250 mg left but that will eventually run out, too). Teva is the only company left for the US supply.

Here's Teva's page on Mexitil:

Mexitil - Teva

You can get it from a certified drugstore in Canada (www.universaldrugstore.com) and Teva tells me some US pharmacies have supplies right now.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: mexiletine frustration

I remember living with Myotonia Congenita at age 16
in 1954.. I am 71 today.. We did't know what it was in those days.. We just called it the Joiner Cramp
after my greatgrandmother.. The Disease came into the family through her in the late 1850's or early 1860's. I know it is hard but I have lived without
medication over the years.. I keep it a secret when
I joined the Louisiana Air National Guard and later
The Air Force. Also when I took my physical to hire into General Motors, Flint Michigan.. It is not easy
living with this disease ..It gets easier as I age..

Type of Myotonia: Thompsen's Disease Diagnosed Michigan State University at age 40

Country: USA Cleveland Tennessee...

Re: mexiletine frustration

That's funny about the Joiner Cramp label...in my family it was called the McCaslin Stiffs after my mother's family. It goes way back for us, too.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: mexiletine frustration

I've had a productive life living with Myotonia
Congentia.. It has not always been easy.. I have
three children, nine grandchildren and two greadgrandchildren.. Two of my children have the disease and also two of my grandchildren. After over
a hundred years, the disease is being genetically deluted in my family..
Before I leave this world I have a request.. I want
to talk to someone outside of my family with the disease.. I feel like my family is the only one in the world with this problem.. 423-614-4022... I will
pay for all calls...This may sound silly but I just want to hear a voice on the other end of the line and discuss living with Myotonia Congentia.
Alex Booth Cleveland Tennessee Retired

Type of Myotonia: Thompsen's Disease Diagnosed Michigan State University at age 40

Country: USA Cleveland Tennessee...