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-   -   Tegretol causing osteoporosis, anyone know? (http://www.healthboards.com/boards/epilepsy/621069-tegretol-causing-osteoporosis-anyone-know.html)

singingirl 07-27-2008 05:32 AM

Tegretol causing osteoporosis, anyone know?
 
I just read in a book I bought on osteoporosis that certain drugs can speed up the process of osteoporosis. I take Tegretol, and I was just diagnosed a couple of weeks ago on bone scan with osteoporosis of the hip. It has been a very frustrating and stressful couple of weeks because I'm trying to read all that I can and make the right decisions on supplements, etc. I've been taking Tegretol for over 25 years, I can hardly believe it when I say that. I haven't had a seizure since the very first two so long ago. But I stay on it for the comfort I guess of being on it, and also because I do experience occasional breakthrough aura type feelings, occasionally though. If it is true about Tegretol causing osteoporosis, then it would make sense. I am bummed.

Travis from MN 07-27-2008 06:47 AM

Re: Tegretol causing osteoporosis, anyone know?
 
I had just noticed Teg had a warning on it when a doctor that I dropped after one visit tried getting me on Felbatol (has a "black flag" warning for aplastic anemia). I found out Teg had a similar warning, but not nearly the risk level, nor had it been pulled from the shelf like Felbatol had briefly been.

Best advice it to talk to your Doctor about it. They usually know a lot of the research on the medications and can answer your questions in depth.

I've been on Teg since 81 as a child. No prolonged problems caused by the medication in my case if that helps calm you at all.

I'm on your mindset for the most part. If it is not broke, don't fix it (for changing meds).

Do they (doctors) have you on any Over the counter calcium supplements, or (anything else?) to help with the bone issues or daily vitamins? (the latter never hurts). As long as they know about your medications I hope they did their research.

--Travis

singingirl 07-27-2008 07:31 AM

Re: Tegretol causing osteoporosis, anyone know?
 
Travis - no i haven't spoken to to the doc yet about this. i'm actually a little reluctant to. i'm sort of afraid of switching meds at this point, maybe i could just lower the dosage a bit myself. the last time i went to see that doctor for those aura type feelings, many years ago, he put me on Effexor for anxiety!!! i took one dose of it the afternoon i filled the RX and a little while later i felt like i was on drugs - I quit and never took Effexor again and still experience the aura type things but just live with them. They occur many times when i'm breathing heavily like on the treadmill, but at other unexplainable times too. i just deal with it. But this realization this morning after reading about tegretol and bone loss has really got me down. Other than the possible/probable bone loss problem with tegretol, i can't say that i have had any other side effects from the drug in all these years, CBC has always been within range. My feeling about doctors recommending herbal or vitamin supplements is that they don't know what they're talking about for the most part. They, I think, are more interested in just prescribing. Prescribe, prescribe, adjust, adjust. I'm a medical transcriptionist and and have transcribed thousands of reports over the years, and this is what I find. I can almost tell by the sound of their voice if it's someone I would take myself to, you know what I mean. Anyway, there are not too many out there who believe in supplementation over the drug. Thanks for your input Travis.

suzeque 07-30-2008 10:59 AM

Re: Tegretol causing osteoporosis, anyone know?
 
I'd say you are right to be concerned and following up to get more info. You really should talk to your Dr. - I'd recommend both neurologist and gyn. I was very well controlled on tegretol for about 15 years. Even with the potent multi-vitamins and high level of calcium supplements I was taking, I was diagnosed with osteopenia, which continued to get worse. When I went to a new neurologist, he immediately sent me for a dexascan and strongly urged me to get off the tegretol. Carbatrol can be a feasible alternative, but I believe still can exacerbate osteoporosis. Like you, I did not want to change meds. My mother had severe osteoporosis, so I decided to go ahead and change meds. I'm now well controlled on Keppra, and subsequent bone density tests have actually shown the density increasing, albeit not by great amounts. I would have been pleased just to see it stop decreasing! (I'm in my 50's). Good luck!

singingirl 07-30-2008 11:55 AM

Re: Tegretol causing osteoporosis, anyone know?
 
suzequ and travis - i think you're right about talking to the doc about it. i guess i will call. it's just that i honestly don't feel most of the time that i even have a problem with seizures, fortunately. i had two nocturnal seizures out of the blue many, many years ago and have never had one since, just those little auras every so often. so i go about my life feeling pretty normal, just taking this medication for what seems like forever. but now knowing that i may have been causing another very bad process to take place i'm just totally concerned. i have been talking on another board to some people with osteop and the supplements, etc., that they take. their advice to me is to relax a bit about it, start concentrating on eating right, exercising more and taking the right supplements and realize that i have osteoporosis but it doesn't have me. maybe that's good advice for just about anything, right?

Travis from MN 07-30-2008 03:26 PM

Re: Tegretol causing osteoporosis, anyone know?
 
You don't have to change meds is what we are saying. Having a discussion with your Neuro about the effects (or possible effects) of Teg, see what THEY think about it in relation to your case, and you have questions you need answered. Obviously you (from what was posted) do not want to change meds right now, but you need a better understanding from a professional view. See what that gives you after all that new information to go from.

Thats why I even mentioned asking the Pharmacist. They know a lot more than we give them credit for. It was mine that caught the med interactions that the issuing neuro missed. That caused me to do the online research and learn more about that ordeal in my past.

--Travis

peterdwalker 08-01-2008 12:44 PM

Re: Tegretol causing osteoporosis, anyone know?
 
Hi Group.
I am about to restart my 45yo twin brother (SevereTBI) on Tegretol. We got off it about 6-7 years ago after being on it for about 9 years. Why? DEXA scan showed he had osteoporosis and osteopenia. The bone health did slowly improved after stopping it - have taken Calc/Mag/D off-and-on so that daily Calcium is about 1500 mg. Tried Miacalcin, but stopped because of nausea.
Two questions:
1) What dose do you all take? (We will work up to 400 mg in a.m., 400 mg early afternoon, and 600 mg at bedtime - Same as before.)
2) Are there any new protocols for maintaining bone health while taking meds that adversely affect bone health?

Thanks,
Pete and Paul

Ps, Currently taking Keppra (750mg, 500mg, 750mg), but not satisfied: fatigue, eye twitching, constipation, aspiration pneumonia. Tried Neurontin before Keppra, and stopped it for same reasons and all these dis-satisfactions were worse with Neurontin.

peterdwalker 08-01-2008 12:44 PM

Re: Tegretol causing osteoporosis, anyone know?
 
Hi Group.
I am about to restart my 45yo twin brother (SevereTBI) on Tegretol. We got off it about 6-7 years ago after being on it for about 9 years. Why? DEXA scan showed he had osteoporosis and osteopenia. The bone health did slowly improved after stopping it - have taken Calc/Mag/D off-and-on so that daily Calcium is about 1500 mg. Tried Miacalcin, but stopped because of nausea.
Two questions:
1) What dose do you all take? (We will work up to 400 mg in a.m., 400 mg early afternoon, and 600 mg at bedtime - Same as before.)
2) Are there any new protocols for maintaining bone health while taking meds that adversely affect bone health?

Thanks,
Pete and Paul

Ps, Currently taking Keppra (750mg, 500mg, 750mg), but not satisfied: fatigue, eye twitching, constipation, aspiration pneumonia. Tried Neurontin before Keppra, and stopped it for same reasons and all these dis-satisfactions were worse with Neurontin.

caverdude 09-27-2008 11:22 AM

Re: Tegretol causing osteoporosis, anyone know?
 
Hey Singingirl,

I feel your pain and anxiety. I've been taking Tegretol for 19 years and was just diagnosed with osteoporosis. My Dr is running a battery of tests to rule out the possible sources, but it's pretty damn weird for a very active male, 43 y/o, non-smoker, living in sunny AZ, to get osteoporosis. The most likely source of the problem seems to be the 19 years of Tegretol. No one ever warned me about this side effect! I'm searching online to see what options exist for anti-seizure meds because I don't want to lose my bones just to save my head from the occasional seizure. What a dilemma...

singingirl 09-27-2008 01:42 PM

Re: Tegretol causing osteoporosis, anyone know?
 
caverdude - no, no one ever warned me about anything like osteoporosis. maybe because when i started taking it back in like 1981 or 1982 i was so much younger than the age when it can start to become a concern. now, all these years later, still taking it 400 mg in the a.m. and 400 in the p.m. Reading all the other posts about side effects of other drugs, I just don't want to mess around at age 56. i do seem to get what i call breakthrough momentary weirdness feelings, can't quite describe them much better than that, and they do seem to occur at different times but a lot after physical activity like the treadmill where i'm breathing quite heavily. i really kind of just take a pause for a moment, let it pass, and then move on with my life... i have been taking Ezorb every day, plus calcium supplements, vitamin D3, and whatever i eat in my diet, plus exercising. not going to change much else at this point in the game. Thankfully, i have never had another grand mal after the first one so many, many years ago. but i would have to say, and i hope this doesn't offend anyone reading this, that i smoked a lot of pot and also did cocaine back then (1981), and i kind of think it had something to do with that. i have no family history whatsoever of epilepsy or seizure disorder. i just stay on it now for the feeling of security that i get from taking it - except now i gotta worry about falling over with a hip fracture LOL~ hope this helps anyone reading!

Travis from MN 09-27-2008 03:30 PM

Re: Tegretol causing osteoporosis, anyone know?
 
Sing, studies have shown that use of cannabis, **when used properly where legal** can help control seizures. That is why in the states that have allowed it's use for medical have included seizure patients.

I'm one of the ones that doesn't like rocking the boat on medications. If I am controlled well, why should I change medications? It's just another tangle to try and go through and re-obtain control again.

Being I have never spoken to my GP about this, I can't offer much. A lot of the time (with family for my basis) they will have people taking vitamins to make up for nutrients. My doc said I could TRY that when I was a little low on a few (not that low) after a look at my levels. However trying to remember to take it daily at 3x a day was too much of a problem and I stopped taking them after 9 months.

--Travis

kellyanne323 09-30-2008 03:35 PM

Re: Tegretol causing osteoporosis, anyone know?
 
I've been on Tegretol for almost 9 years. About three or four years after starting it, my neurologist told me that studies were showing Tegretol can cause bone loss and advised me to start on calcium and vitamin D supplements (vit. D helps the body absorb calcium). Neuro said taking 2 Tums a day would be enough, but I take an OTC calcium supplement that contains no artificial flavors, colors, preservatives, etc. instead, like the other supplements I take (D and for migraine prevention, B-complex with added C).

singingirl 10-01-2008 08:59 AM

Re: Tegretol causing osteoporosis, anyone know?
 
hey travis - i too have read about cannabis being positive for many medical issues, i guess not so much the seizure thing. but i do recall reading many times about the effect of cocaine and speed-like drugs doing a number on a person. so, if that had any relation to what happened to me 20-some years ago, then i have to pin the seizure activity to that. bad girl, i was.... unfortunately, no doctor has told me about bone loss and tegretol.

as far as the other poster, kellyanne - i would start taking a better quality calcium other than TUMS. i have read that TUMS is just a crappy form of calcium. at your age, you have a terrific chance of halting or at least slowing it with proper exercise, diet and supplements.

kellyanne323 10-02-2008 05:58 PM

Re: Tegretol causing osteoporosis, anyone know?
 
[QUOTE=singingirl;3747525]hey travis - i too have read about cannabis being positive for many medical issues, i guess not so much the seizure thing. but i do recall reading many times about the effect of cocaine and speed-like drugs doing a number on a person. so, if that had any relation to what happened to me 20-some years ago, then i have to pin the seizure activity to that. bad girl, i was.... unfortunately, no doctor has told me about bone loss and tegretol.

as far as the other poster, kellyanne - i would start taking a better quality calcium other than TUMS. i have read that TUMS is just a crappy form of calcium. at your age, you have a terrific chance of halting or at least slowing it with proper exercise, diet and supplements.[/QUOTE]

I'm not sure how you know my age? I don't have osteoporosis; I just mentioned that my neuro told me about the link and recommended taking calcium supplements to prevent it. HE suggested Tums, but I choose to take plain calcium supplements with no added colors, preservatives, etc. instead. With diet, I get calcium through leafy greens and such but do not consume much dairy, so supplements are necessary, at least while on Tegretol.

kellyanne323 10-02-2008 06:07 PM

Re: Tegretol causing osteoporosis, anyone know?
 
i just stay on it now for the feeling of security that i get from taking it - Singingirl

I can totally understand this. I haven't had a seizure since August '05 and am about to start the process to go off Tegretol (neuro wants an ambulatory EEG & MRI first). I have to say, though I am looking forward to going off of it, it does take that feeling of security away. I am comfortable on the Tegretol and it's been the only AED I've been on for longer than a week. Part of me thinks why change it now when there are no issues.


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