I’ve got major problems, friends. For months I’ve had all kinds of weird physical issues and they recently found that my liver enzymes number is VERY high and continues to rise. Blood works shows nothing, nothing that I had been doing myself (GOOGLE why liver enzymes can go up), CT scans ok, etc. Now they think the Topamax may be causing it and want me to go off of it. This is problematic since I need it to function daily (for MAV symptoms). After I am off it they will retest the liver enzymes and see if the number goes down - if it does, it’s the med. What am I going to do? It took so long to find a med to help me and its unclear if other meds would 1. cause the same problem and 2. help me with the MAV. I have a call in to my neuro-doc who prescribed it to ask if there might be some other med that is less toxic to the liver.
I’m freaked out to say the least. If I have to stay off the med and can’t find another, I won’t be able to function well and then there’s all kinds of issues re: disability and my work (long story; it isn’t totally covered). If I stay on the med, I risk damaging my liver. What am I going to do??
Hey kiddo - Read the new “Evidence-based Guidelines” that Scott just posted - there’s a list of meds that have strong evidence of success. Hopefully liver problems are not associated with all of them, and your neurologist is going to know which ones are the best choices for your situation.
This is certainly scary and I don’t blame you for being freaked; I hope your neurologist can get back to you with a good alternative soon.
I know it’s hard to think about good outcomes, but since you’ve been able to find relief before, I hope you can envision good results wtih a different medication. It’s a realistic possibility, so in between freaked out times maybe you can grab a moment of peace by picturing yourself feeling well and your liver getting better.
I don’t think they want me doing anything in terms of taking anything at this point. They feel my liver isn’t metabolizing the Topamax right any more or something. I see the half life of it is around 21 hours but that it takes around 5-6 days to clear out of your blood system totally. I don’t understand that.
The way I understand it, half life means when you take a dose of it, 50% of it is still actively available 21 hours later. It doesn’t mean that in another 21 hours the other half is gone - the rest usually peters out much more gradually. So for example, if you stopped taking it (and I’m just guessing here), you might still have 25% of it still actively available 3 days later, 5% available 4 days later, etc. Half life is a way of telling when the next dose is going to be needed, not when the medication is going to be entirely eliminated from your system.
Yes they said go 25 mg a week at the most. I am hoping my liver doc is ok with this or I am going to be in big trouble. But also my neuro doc said to expect side effects with going off of it, particularly migraines, other nasties etc. I Didn’t even think about this! So besides the MAV issues returning now I have to deal with side effects of coming off the drug? &%$#!!
Has anyone weaned themselves off of Topamax and if so, how much and over how long of time? What did you experience?
I am screwed. I need to be off of this stuff to check my liver again but can’t go fast, but may or may not be able to wait depending on what liver doc says. And no matter what I will feel like shit and have symptoms of all types. Good grief, how the heck am I supposed to handle this? I work (guess that will stop soon and will be on some sort of disability which wont pay all my bills) and try to function on some level. No computer at home to even discuss with you all.
Neuro doc said after I get through all this to meet with her in mid-May to discuss trying a new med, IF I can get on one w/ok from liver doc. Time delay due to getting off the Topamax and testing the liver again.
I am so sorry that you have to come off of topamax when it was working! What a bummer. I was on 200 mg at one point and came off of it slowly. I think at about 12.5 mg a week or every two weeks. I think the only side effect I had doing this was some brain zaps. It wasn’t working for me and I am glad to be off of it so I am sure this is very difficult for you.
Hopefully you will find a good replacement for it. Since you responded to one drug, it would seem likely another will work as well. For many of us, we don’t respond to anything so I am hopeful for you that something else can take it’s place.
