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Old 07-22-2010, 04:29 PM #1
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Default Question about Topamax

I have a question about Topamax, and I'm hoping someone with some experience or knowledge can help me.

I have been on Topamax for a couple of months (100 mg twice a day). I didn't think anything of it and haven't had any side effects from the medicine.

I had purchased a book about Peripheral Neuropathy on Amazon that I finished reading this afternoon. Included in the book was a chapter on treatments for neuropathy. The section that talked about Topamax talked about how Topamax has go through your kidneys. I wish I still had the book so I could copy the sentence word for word, but I am letting a friend borrow it to read up on neuropathy.

My question is this. I only have one good kidney. One kidney is only 15% functioning. I am not allowed to take things like aspirin, aleve, or ibuprofen because they will affect my kidney. My doctors don't want any damage done to my good kidney (obviously, neither do I). My question is--is Topamax bad for a person's kidneys? I looked it up online and found some websites that said that Topamax led to kidney failure. I also found websites that said taking Topamax could lead to kidney stones in some people. That's not an issue with me, at least not thus far. But I am wondering if I should be alerting my neurologist about my kidney problem and going off of Topamax. To my knowledge, it isn't helping anyway. Does anyone out there have any idea?
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My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 07-22-2010, 04:37 PM #2
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Lightbulb

Topamax can alter the excretion of bicarbonate, and hence it also may cause kidney stones.

A warning letter was sent to doctors several years ago to watch for low serum bicarb in patients.

http://docs.google.com/viewer?a=v&q=...s_9ecvDzikYVow

Acidosis leads to altered feelings in the periphery... called paresthesias.

Other anti-seizure drugs do not have this effect on the kidneys.
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Old 07-22-2010, 04:52 PM #3
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Originally Posted by mrsD View Post
Topamax can alter the excretion of bicarbonate, and hence it also may cause kidney stones.

A warning letter was sent to doctors several years ago to watch for low serum bicarb in patients.

http://docs.google.com/viewer?a=v&q=...s_9ecvDzikYVow

Acidosis leads to altered feelings in the periphery... called paresthesias.

Other anti-seizure drugs do not have this effect on the kidneys.
I really appreciate how willing you are to respond.. and how quickly you respond... but I am not a doctor, a nurse, and have not studied in the medical field. I have a very hard time with medical terms and just can't comprehend things like this. I'm sorry... I just don't understand it.

I don't think I have kidney stones, because I'm pretty sure I'd be aware if I did... though I am not sure how sudden the onset is with kidney stones.

What I am trying to find out, though, is if it is a concern in general with the kidneys.

My doctors have told me to stay away from ibuprofen, aleve, aspirin, etc--indefinitely. I haven't taken anything except for tylenol for a headache my whole life. When I see the word "kidney", I automatically see that as a red flag... but it may not be. Maybe Topamax is just fine for my kidney. That's what I'm asking. And maybe nobody here knows--maybe it's a question for my doctor. (Which, by the way, I do plan to ask my doctor. I just thought I'd ask here in the meantime.)
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 07-22-2010, 04:58 PM #4
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Lightbulb

Well my opinion is that it is not 'just fine' for the kidneys.

I'd ask for another anti-seizure drug, if it were me.

If it is not working well, then that alone would be a reason to change.
This drug also causes vision defects, among other things.
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Old 07-22-2010, 05:06 PM #5
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Well my opinion is that it is not 'just fine' for the kidneys.

I'd ask for another anti-seizure drug, if it were me.

If it is not working well, then that alone would be a reason to change.
This drug also causes vision defects, among other things.
Okay, thank you... I will do that.

I haven't noticed any bad side effects, but I haven't noticed any positive changes either. I care about my one kidney too much to damage it. The last thing I need is to worry about a kidney transplant years down the road... I have enough medical problems!
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 07-22-2010, 05:25 PM #6
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If it is not working well, then that alone would be a reason to change.
Yupyupyupyup! Seems like there isn't anything (prescription) that any of us take for PN that is actually good for us...if it doesn't make you feel better, then kick it to the curb!
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Old 07-22-2010, 05:33 PM #7
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I was given celebrex for my arthritis, by a rheumatologist. I asked her about my at risk cardiac profile and arrhythmias...."Oh it's fine".

Later, my cardiologist said, "I would not take it if I were you".....so, one doc may say it is fine, another not.

I have kidney issues, exactly what we are discussing here, the low bicarb. Mine isn't due to medication as far as I know, because I am not on that much....however, I would not risk your precious kidney function on this drug, when you can get the same effect from other medication.

Also, I read your history and was wondering if they ever tested you for autoimmune diseases, and things such as Raynauds? I may have missed this in another post of yours, but, I figured you could tell me quicker than I would find it.
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Old 07-22-2010, 05:46 PM #8
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Also, I read your history and was wondering if they ever tested you for autoimmune diseases, and things such as Raynauds? I may have missed this in another post of yours, but, I figured you could tell me quicker than I would find it.
When they tested me at Mayo, they took 18 viles of blood and tested for a LOT of different things...she spouted off a ton of things that I had never heard of... so I'm not sure. My family doctor had also tested for rheumatoid arthritis, lupus, and other things... not sure about Raynauds specifically. I don't know anything about that one.
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 07-22-2010, 08:35 PM #9
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get copies of all your results for blood test, mri's, emg's etc. keep them in a folder this way you have them to refer to for yourself, to provide future doctors and also to keep track of long term trends. Start now because the paperwork can certainly start piling up. As an example the job i worked in the first 23 years i was there my medical folder was the thickness of the folder itself with a few pages inside. the last 10 months i was there it swelled to two full folders. you have a lot of different things going on with you so its going to be harder and harder to remember and keep track of what you had done and where you are headed without an effective filing system.
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Old 07-23-2010, 06:52 AM #10
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Default I can only second--

--what echoes said; get all copies of all test results you've had--it makes it easier when you go to new doctors, of even for follow-up with old ones.

In the end, you are responsible for understanding what the test results might mean, so that you can ask informed questions of physicians. Given the medical system we have, with rushed doctors not looking at complete pictures, we have to be our own best advocates.

I recommend the Liza Jane spreadsheets quite often--they're at [url]www.lizajane.org[url]--these were developed to be about as comprehensive a listing of tests for neural symptoms as could be, and the spreashseets are very effectie for suggesting tests to doctors and tracking results/looking for patterns over time.
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