Why I’m Giving 3 MS Medications Another Try

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by Ed Tobias |

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Over the many years I’ve lived with multiple sclerosis (MS), I’ve used several medications to treat my MS symptoms. Some have helped, some haven’t, and some worked at first but then lost their efficacy.

I recently returned to three of them that I’d stopped using for various reasons. Here’s why.

Provigil

Provigil (modafinil) is a medication that reduces fatigue, one of my most troubling symptoms. For many years I used modafinil, the generic version, to improve my alertness. A tablet in the morning would help for about eight hours. Occasionally, I’d take a second dose later in the day if I was extra tired or had something special to do that night.

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But about a year and a half ago, I began to feel it wasn’t helping any longer. Coincidentally, research was released around that time concluding that modafinil wasn’t more effective than a placebo at reducing MS-related fatigue. I stopped using it, and guess what? I didn’t feel any increase in my fatigue level.

That fatigue began to creep back, however, and about a month ago, my wife suggested I resume taking modafinil. I did and it’s helping. Is that because, over the years, I’d built up a resistance to the medication and I needed to take a break? Could the quality of the generic medication have changed because of a change in manufacturers? Am I now benefiting from a placebo effect? Does it matter as long as I’m feeling better?

Neurontin

Neurontin (gabapentin) is a seizure-reducing medication primarily used by people with epilepsy. People with MS use it to control pain from spasticity and lesions. For many years, I’d used baclofen to control my spasticity, but I switched to gabapentin in an attempt to control both my jerky legs at bedtime and the sharp pains that occasionally traveled down my legs from my hips to my knees.

Back and forth I went between the two, trying to find a balance. But a particularly bad bout of nerve pain in my leg sent me back to gabapentin. With a nod from my neurologist, I upped the nighttime dose from one capsule to two. Overnight, I went from being unable to put weight on my right leg without shooting pain to returning to the normal me. And my nighttime leg jerking eased, and sleep came faster. So, in with gabapentin and out with baclofen, for now.

Ampyra

Ampyra (dalfampridine) is known as the “walking drug.” It strengthens the signals sent from the brain through nerves that have been damaged by MS. When I first began using Ampyra many years ago, it improved my walking ability, just as research said it would. But I had to stop using it when my insurance changed and my copay jumped from $40 to $500 a month.

In late 2018, a generic for Ampyra became available in the U.S., but resuming the medication didn’t cross my mind. When I saw my neurologist recently, however, and complained that I was slowing down, she suggested looking into that generic, dalfampridine. Guess what? I found I could buy a 90-day supply for $120, the same as the $40 a month I used to pay! Needless to say, I’ve returned to using it, but the jury is still out on whether it’s helping.

Keeping my eye on the target

MS is a moving target, so we should all remember to occasionally adjust our sights and review our medications. I’m glad I did.

You’re invited to share your experiences in the comments below and to visit my personal blog at www.themswire.com.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Adrian Sohn avatar

Adrian Sohn

thanks for this Ed
my story is similar to yours
I got MS in 1993. I'm on a bunch of meds too.
Fampyra, Alertec ( modafanil) Baclofen ( I haven't needed to try Baclofen) I'm also on Flomax, or tamsulosin ( for my bladder) also one that I am on is Tizanidine 4 mg x 3 before bed, it is a muscle relaxant but it also is, for me, a sleeping pill, about 30 minutes after taking it I am sooooo tired I go to sleep. It does help my muscle spasms for sure

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Ben Smoke avatar

Ben Smoke

I'm now taking Gabapentin at night to significantly reduce neuropathic pain in my feet and legs. Inexpensive & works. I am 78 with SPMS. Thanks, Ben.

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Ed Tobias avatar

Ed Tobias

Thanks for the info, Ben. I've found that it works off and on for me. Last night was one of those night that it didn't and I got very little sleep.

Such is life with MS,

Ed

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Jan Greenberg avatar

Jan Greenberg

MS reared it’s ugly head for me in ‘83. I am now SPMS. I avoided disease modifying drugs for years. A Dr finally diagnosed Ampyra. After a trial run, I decided not to continued. Years later, I gave it another try and and found a more bearable cost. It showed no improvement for me. I have also tried and later dropped Gabapentin. I do have the MS fatigue and just put up with it. I would consider Provigil, but since my husband and I had to argue to try Ocrevus, I question the battle. Years into Ocrevus, I’m wondering about other symptom management.

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Ed Tobias avatar

Ed Tobias

Hi Jan,

There's a difference between Ocrevus and the other drugs you mention. Ocrevus is designed to slow or stop disease progression. The others are only designed to treat symptoms.

As for the "fight" over Ocrevus, it's much more expensive than any of those symptom-treating meds. I'd guess it would be much less difficult to get approval for Provigil or modafinil.

Ed

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Cathy Ames-Farmer avatar

Cathy Ames-Farmer

QUESTION: Were you off Provigil/ Modafinil 1 1/2 years before you resumed taking it again?

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Ed Tobias avatar

Ed Tobias

Hi Cathy,

No, I it was more like 6 months.

Ed

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Louise Howey avatar

Louise Howey

Hello fello ‘giving my meds another try’ 🤗 I too decided to give Fampyra (I’m in France) another go as I had been pxb it about 5 years ago but didn’t need it then as I walked quite well anyway so took my self off. I am 54, female with primary progressive. After fracturing my femur just before the pandemic I needed 3 pins in my femur. Seemed to be doing well but physio stopped and I realised my walking was severely affected. Balance bad mainly, low energy, using a walking cane after the op and now still am 3 years on. I was reviewing Ampyra and noted more data from 2019 saying it had been recognised in not just helping speed but also the ability to walk! So I asked my consultant if I could try it again and after 3 hours from taking my first tablet, I noticed a difference! It really works for me! I saw my physio after 3 days of starting it and even then she could see a difference. Yesterday after 3 weeks of taking it both of us could not believe the improvement! More stable walking on uneven ground therefore quicker and more energy. It is giving me hope to getting back to what I was before my accident trauma. I notice when the tab is wearing off and need to take my next dose! It seemed to help my foot drop a little too with my walking being more active. I take the biogen version. Sorry so long but I thought it may help other people. It is always worth trying again after a break. Lucky to be in France as ms is considered a long term condition and payment comes under a different method. All the best to you and everyone else reading this. Timing of this article was prefect for me retrying Ampyra. All the best from France, 30C , too hot for me!

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Ed Tobias avatar

Ed Tobias

Hi Louise,

I'm sorry about that fall. Ouch! But I'm really glad that Fampyra is working well for you. I think resuming it is helping me a bit, but I've had several years of progression since the last time I took it so I'm not surprised that, so far, I'm not noticing a big change. While writing this column I discovered that Ampyra is also used to improve finger dexterity. I HAVE noticed a change for the better with that.

a bientot,

Ed

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Heather avatar

Heather

Doctors talk about taking a "drug holiday". I stopped Ampyra for a few days and could barely walk. I tried the generic when I went on Medicare because of cost and it wasn't as effective. Ampyra is one drug I will never stop. It is very expensive but worth the cost if I can continue to afford it.

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Ed Tobias avatar

Ed Tobias

Thanks for sharing, Heather.

I've found that generics can be inconsistent but I'm giving the for Ampyra another try. I'm retired and, especially these days, a little cost saving means more than ever.

Ed

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Rosalie Mehrab avatar

Rosalie Mehrab

My husband has PPMS diagnosed about 27 years ago (but has had symptoms much longer than that). At first all he needed was Gabapentin (generic Neurontin) and Cyclobenzaprine (generic Flexeril). Other than his hamstrings being too tight he was basically ok. For about 15 years his progression was really slow. His neurologist first put him on Avonex (yes it is a medication for RRMS) but after a while he developed antibodies to it so he was taken off that. Then he was given Copaxone (yes another medication for RRMS). None of the injectables helped. Another neurologist took him off that. He also was given steroids IV every 3 months…they were amazing. My husband could do things that he couldn’t do for years. Then more research showed the consequences of steroid use…so they stopped that. Now my husband takes 600mg of Gabapentin three times daily, Baclofen 10mg three times daily, Dalfampridine 10mg every 12 hours and Cyclobenzaprine 10mg once daily. Every now and then when my husband forgets to take one dose of Dalfampridine his abilities are decreased and then he looks in the med boxes and he realizes he forgot his Dalfampridine. His MS progression is noticeable (that’s how rapid it is). He can walk in the house using a cane in one hand and the wall in the other, at physical therapy using a rollator…for longer distances he needs a wheelchair. The baclofen makes my husband really sleepy. His neurologist suggested a baclofen pump but my husband doesn’t want that. Luckily my husband’s hobbies are all “sit-down” hobbies so his MS is just annoying and not devastating.

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Ed Tobias avatar

Ed Tobias

Hi Rosalie,

Thanks for sharing all that. It took 15 or 20 years for my MS to begin noticeably declining and the decline proceeded slowly. Now I use two canes around the house and an electric scooter for anything more than about 100 steps. I'm a bit surprised that the meds your husband is being treated with, now that he's done with Avonex and Copaxone, are only for symptoms. There are other, newer and more powerful medications that are designed to slow progression. Most notably, Ocrevus.

By the way, my hobbies are also sit-down...ham radio and, of course, writing. My MS can be frustrating, rather than annoying, but certainly not devastating.

Ed

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Michael Drohan avatar

Michael Drohan

I've taken all of these at various points in my 19 years too, but have consistently taken ampra/dalfampridine. Even though I don't walk regularly any more, i feel it still helps me feel "centered," and helps function beyond the legs at this point

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Rosalie Mehrab avatar

Rosalie Mehrab

My husband and his doctor agreed that the potential side effects/risks from Ocrevus were not worth the potential benefits. My husband’s hobbies are his internet radio station and ham radio (wa2fnq). He is still able to solder wires so he mostly is just annoyed with his ms. The bladder issue is his latest annoyance. Thanks for answering my post.

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Ed Tobias avatar

Ed Tobias

Rosalie,

The choice of any treatment should be a collaborative effort between patient and doctor and a weighing of risks vs rewards. I'm glad that was the case for your husband.

I've been a ham operator since 1961...originally WA2VKK in NYC and now KR3E in MD and FL. I operate mostly Morse code. If your husband operates that mode (not too many do these days) I'll keep an ear out for him.

Ed

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willadeane Howard avatar

willadeane Howard

Hello Ed. Love all your info it has been a great help. Been dealing with MS since my DX in 1994 but definitely had since I was a teenager. Your info on your trip to Florida was a eyeopener I went straight to my Doc. Changed my meds to Mirbegron same as you but different name in Canada. works great.

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Ed Tobias avatar

Ed Tobias

Hi Willadeane -

I'm glad what I write has been useful to you. Comments like yours make my day! What does your doc think about mirbegron?

Ed

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Beth Ullah avatar

Beth Ullah

Hi Ed,

This is a fab rundown of your medication battles... one which I think anyone with MS can agree is an ongoing battle. I loved your analogy at the end. "MS is a moving target."

I am really intrigued how gabapentin came to be one you're using instead of baclofen. I am so glad it's working and your leg feels like your own again. I can relate. Do you find the gabapentin affects your fatigue at all?

Beth

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Ed Tobias avatar

Ed Tobias

Hi Beth,

I'm still chasing that target. Gabapentin helps my nerve pain while baclofen is better at spasticity. I'm not sure whether I can take them together (been too busy to check) so I've been switching between the two. I only take them before bed so I don' worry about fatigue.

Ed

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