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Newly Diagnosed - Mainly Worried About Medicine Side Effects
Fri, 04/27/2018 - 20:20Topic: New to Epilepsy.com
Hi all,
New here, based in the UK (I'm English), was diagnosed on Wednesday by a neurologist, after 4 seizures (minimum) in 2 months, all in my sleep, being taken to hospital twice (including once evacuated off a plane). The reason for this intro is to say, I'm still kind of in shock, especially as someone who has never done drugs, very moderate drinker, etc. So I never really expected at the age of 31, to be having seizures and being medicated for it.
In any case, they put me on levetiracetam (forgive my spelling) known to most of you as keppra, first 250mg to go up to 500mg. I do feel quite strange already, but am determined to stick it out, only worrying about any physical side effects. I did post in the relevant thread on this in the correct sub-forum, but my post is still awaiting moderation. So, what worries me, is I see all kinds of people claiming to be losing their hair (yes believe it or not, my main worry is going bald, I know that's vain!), and to a lesser extent skin problems. I don't believe everything I read on the internet, but neither do I think these people are engaged in some kind of conspiracy, so I guess there is some truth to it. But often what is missing in these cases is a rational discussion, of people explaining their wider health, what other medicine they are taking, and a serious look at the statistics of what % of people are affected and in what way (I have seen this link that was posted, but the jargon is not clear to me, what does "post-marketing" reports mean, and there is no number posted, so it could be 0.04% or 40% of people losing their hair for all the reader knows: https://reference.medscape.com/drug/keppra-spritam-levetiracetam-343013#4).
So yes please do forgive the rant, all, but I am a little bit frustrated by this, I am sure many will identify.
Having said that, though, I also wanted to say that this forum is a great resource and it is so important sometimes just to read other people with similar experiences. So thank you to all the volunteers who keep it going.
W
Comments
Well I checked and found the
Submitted by WilliamD on Sat, 2018-04-28 - 13:17
Well I checked and found the list of possible side effects in the box, but this is very different from the Doctor telling me "you ay get a bit of drowsiness or mood changes, but don't worry most people don't have ny side effect." He didn't even mention avoiding alcohol which the box is pretty clear on. I cannot help feeling I am right in saying there is a frustrating lack of clear information. Plus if people are going to post about side effects, at least tell us the context in terms of what you are taking, how long for, what other problems you have and relevant medical history. I don't think that's too much to ask for when these are things that have a huge effect on the health of the person reading.
People usually say what drug
Submitted by Amy Jo on Sat, 2018-04-28 - 14:04
People usually say what drug they are on which is almost the only relevant info that matters. The dose might matter when they are under the standard therapeutic dose range. But for the rest.. my child gets a toxic reaction if she takes too much of a certain drug so we dose her three times a day instead of twice, the actual daily dose is on the low end. On another drug she had mild impacts on a dose that many adults could not handle (she was 8, so the mg/kg/day were extremely higher by comparison. Your doc should have mentioned avoiding drinking but your pharmacist is also a great resource. Keppra has almost no drug interaction issues so is a safer drug than most in that regard. Our docs recommends taking B6 with it to help with the mood issues. We didn’t stay on it long as one of those big issues occurred.
The side effect lists are
Submitted by Amy Jo on Sat, 2018-04-28 - 11:44
The side effect lists are pretty much compiled from studies before the drug is available, but that doesn’t mean they stop getting new info. E.g. lamotrigine got a new warning added about a possible fatal reaction just the other day - https://www.medpagetoday.com/washington-watch/fdageneral/72547But that broader conversation about other health conditions is not currently helpful in figuring out which reactions you may have. There are some cases where they know people of a certain heritage should avoid a drug or with certain genetic epilepsy do not respond to certain drugs but we are a far cry from individualized medicine. If you know how you liver enzymes function and how well your kidneys work, you’ll have a better idea than most if you’ll metabolize a drug well which is more than most people know.