Fycompa/Perampanel 6-week update

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masterjen

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Another update for those interested:

As a quick review, Fycompa is a once per day (taken at night) medication. One starts at 2 mg for 2 weeks, then increases by 2 mg every 2 weeks until 6-12 mg is reached. Seizure improvement, if this is the right medication for an individual, can start to appear at 6 mg.

I had no side effects (or benefit) at 2 mg. At 4 mg I was noticing imbalance and fatigue as soon as 20-30 min after taking it, and therefore found it necessary to take it and get into bed fairly soon after. Some fatigue and leg weakness were noticeable even during the day. A couple of times it seemed the myoclonics were worse and I was concerned it was the medication, but then they stopped again.

I have just finished 2 weeks at 6 mg. The side effects at night were stronger (imbalance, feeling "buzzed" and sleepy), and my legs would feel clumsy during the day at first until dinner but finally in the past 4 days I've noticed improvement in the side effect of leg weakness and/or ataxia by 2-3 pm.
As for seizure improvement: daytime mini-partial seizures are close to 100% gone (I would get them 1-2 times per day 5/7 days of the week), the nocturnal tonic seizures seem weaker as I am less prone to having a headache, weakness and fatigue the morning following one and it would seem the tonics are predominantly lower body when they do happen rather than full-body.

Because of the effects on my legs (ataxia is a recognized side effect of Fycompa), I've asked to stay at 6 mg another 2 weeks or so before increasing to 8 mg, and my doctor agreed esp. as there are signs that this side effect is improving. It is important for those reading this to note that I have issues with my legs at the best of times (ataxia, mild dystonia) due to the neurological condition that also causes seizures for me, so it is quite possible that those who do not have pre-existing physical issues with their legs would even notice this side effect as much as I do.

Fycompa has irritability as a side effect (low percentage, though, and more common in teens and 20s). I have only noticed irritability this past week but I cannot rightfully start to blame the medication since it is "that" infamous time of the month when I might be a little short-tempered anyway lol.

Weight gain is also listed as a possible side effect, but again a low percentage. I have gained a couple of pounds which admittedly isn't bad, but bothers me none the less. It certainly has not been due to increased appetite and I am a very careful eater. I wonder if this medication might change metabolism somehow: of a particular food group, or metabolism in general. If anyone has insight into this (for example because of other medications known to possibly increase weight) I would appreciate knowing!
 
Very interesting Jen...thanks for the update. I will stay tuned for further updates. Sounds like you're doing fairly well. Hope that continues!

Cindy
 
Weight gain is also listed as a possible side effect, but again a low percentage. I have gained a couple of pounds which admittedly isn't bad, but bothers me none the less. It certainly has not been due to increased appetite and I am a very careful eater. I wonder if this medication might change metabolism somehow: of a particular food group, or metabolism in general. If anyone has insight into this (for example because of other medications known to possibly increase weight) I would appreciate knowing!
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My [very loose] guess is that it has something to do with the role glutamate receptors play in regulating hormones and dietary metabolism. (Fycompa and many other anti-seizure meds are glutamate receptor antagonists). One study on mice who were lacking a particular kind of glutamate receptor found that they were 8% heavier than control group mice. As in your case, this weight gain wasn't due to altered/increased food intake.
 
Interesting, and thanks for the input. This makes sense. So since Fycompa is suppressing glutamate receptors, would it be true that there may not be way to avoid weight gain in the case of someone who already exercises a lot and eats a very health-conscious diet? Is there a way of compensating for the effects of reduction in glutamate produced - eg. by eating more or less of certain foods or taking supplements that won't "undo" what the Fycompa is intended to do? I'll do some searches to see what I can find, but just wondering if you have any further info. at hand about this.
 
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So far I haven't found any mention of a particular approach that counteracts the non-appetite-related weight gain without undoing the benefits of the Fycompa. And the science isn't altogether clear -- for instance, magnesium is also a glutamate antagonist (to a lesser extent), but it's not associated with either weight gain or loss.

Maybe you could try increasing the level of muscle-building activities in your exercise routine? That might kickstart your metabolism, or change the nature of the weight gain to more muscle than fat. Any chance the Fycompa is causing fluid retention? That might be another area to tackle.
 
I will definitely start increasing the muscle-building.
As for fluid retention, I have noticed this. In started intermittently on valproic acid and now on Fycompa it is present daily. It is not severe, but particularly by the end of the day I notice swelling for my feet and ankles. Has this been an issue for you at any point? How did you manage it if you did? My salt intake has always been low, so changing this won't change the fluid retention. I looked up some foods that are known to act as diuretics, like celery, grapes and parsley, but so far (3 weeks) an increase in consumption of these has not changed anything. If you had an issue with this, how did you manage it?
 
I do have an issue with fluid retention around my feet and ankles, and I haven't figured out how to deal with it yet. I work at a standing desk, so I think some of the problem may be related to that. I think B6 is supposed to help, but I haven't taken it in a scientific way to see if it makes a difference.
 
weight gain I'm not worried about since I walk my little dog so much.
Now irritability is another story
 
Belinda: I know everyone reacts differently to medication but irritability for me has not been an issue. I believe key is to ramp up slowly on the dosage increases to minimize this and all the side effects. Some doctors apparently have their patients ramp up by 2 mg every one week which for me would have been far too rapid. I am staying at 6 mg for 6 weeks before going up to 8 mg because of the effect it is having on my legs (at first all day and now diminished to a few hours after I first get up :) ).
 
I call this morning about preapproval for Fycompa needed by my insurance company.I dread talking to my neuro's secretary again.
 
Good luck Belinda, and I hope your neurologist's secretary does what she is supposed to do!
 
The Fycompa was pre approved I was told when my pharmacy called me.
My hubby Dennis will pick it up tonight on his way home.I will start taking 2MG at bed time.

My neuro must have called last time talked to him he ask if I had number I told him his secretary did.
Belinda
 
Belinda5000 said:
The Fycompa was pre approved I was told when my pharmacy called me.
My hubby Dennis will pick it up tonight on his way home.I will start taking 2MG at bed time.

My neuro must have called last time talked to him he ask if I had number I told him his secretary did.
Belinda
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Let me know how it goes. When you get to 4 or 6 mg will any of your other medication doses be changed, or will you and your doctor be playing it by ear? Fycompa is known to interact with Topiramate/Topamax and Tegretol and if I recall, you are on one of these. For your own information: http://www.drugs.com/drug-interactions/fycompa-with-topiramate-3426-15954-2216-0.html and http://www.drugs.com/drug-interactions/fycompa-with-tegretol-3426-15954-497-234.html Doesn't sound like it is a big deal; perhaps just that you may not achieve benefit from Fycompa until a higher dose than you would were you not on the other medication. Again, wishing the best for you and keep me posted!
 
I talked with my neuro and he isn't concerned about it interacting with the Tegretol and Topamax I take both. it brings the levels down a little bit he says at least that is what he said when I talked with him.:ponder:
 
They are thinking of putting me on this medication this week, I would be interested in knowing how your journey progressed? X

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I got as high as 8 mg for several weeks, but then it was decided to drop back to 6 mg. At 8 mg I was getting dramatically more physical side effects (imbalance like I was drunk, ataxia, etc.) that would persist even in the morning. HOWEVER the strength of the side effects for me are thought to be due to medication interactions. In a couple of weeks I may be asked to lower some of the other medications so Fycompa can go back up to 8 mg. Once I reached the 6 mg level of Fycompa (and same thing at the 8 mg level but worse) I had to be sure I was lying down in bed and ready to sleep within 20 min of taking it because the "hit" of imbalance and sleepiness can be very strong.

This medication has a warning of irritability, aggressiveness and psychotic behavior even in those who haven't had these before. I felt a bit quicker to frustration/irritability at 8 mg, but noticed nothing at the lower doses.

Hope all goes well and things improve for you if you are put on this medication.
 
I hope it doesn't effect me too badly if they do put me onto it, I had terrible psychotic effects from Keppra (to the extent I was commited) and all of the medications have given me bad balance issues.

New tablets are all so scary. Thankyou :)

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I'm losing weight but it's not because I'm of the Fycompa I'm on, I exercise and I watch what I eat.
 
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