Tegretol XR

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KelVarQ

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Anyone taking Tegretol XR? If so has anyone experienced hair loss on Tegretol XR? My neuro wants to put me on 100mg. in the am and 100mg. at night, definitely not a high dose. Also, is Tegretol XR and regular Tegretol the same thing besides just the extended release? I'm nervous of the XR since I hear people state once they started the XR this and this happened and they ended up going back to the regular drug non XR. I'm tempted to call my neuro and ask for regular Tegretol non XR, but figured I would throw out here 1st to see what you all think. Thanks!
 
I think Crystal11 is taking Tegretol XR and also Keppra XR -- she may chime in here, or you can search for her posts. The regular and extended release versions of the AEDs are essentially the same, but there can be an adjustment period while shifting from one to another. Some people have had positive experiences with the XR versions, but not everyone has.
 
I'm on Tegretol CR (it's what they call XR in Canada). Personally I like it because the levels don't peak or drop as greatly so that it lessens the side-effects & because it's in my system more evenly throughout the day my seizures are likely to be less (scary thought since I've already got so many lol).

I've had no noticeable problems with hair falling out though. Actually I used to have a great, thick mop of hair below my shoulders before I shaved it off for an EEG (Kojak style) then I just kept it short.
 
Have you thought about the sister drug trileptall? You might want ask the doc. about it and see if the side effects are better for you.


:sw: Ken
 
Hello! LOL I am using both XR for Keppra and Tegretol. I have been on Tegretol XR for several years now and would like to stay on it since the levels do stay the same all day. It would take three days for it to leave your system and go below theraputic dose- I found this out the hard way after trying to stop it on my own after having a two month seizure free time. BAD IDEA! I did try to reduce it a few times and now I have Atonic seizures happening now. So no more messing with Tegretol XR now- seems to be a little hard to get off of but it could be becuase I take Keppra. Now I take Keppra XR 3000mg and Tegretol XR 600mg everyday and will see how the Keppra does. From experiences from the last few years, the XR stays at a steady state for a long time and you don't feel the lows of meds getting low in your system. Thats what I noticed anyways.
PM me if you want anymore info on it. Tegretol is a 1st generation med and is older- but works well if side-effects don't get ya. I've been doing pretty well so far.
The meds are the same, just released in to you system slowly and constantly. I take the meds in two doses even though you can take it all at once.

Please take care-
Crystal
 
Rebecca complained about hair loss about the time she was new to AEDs. Tegretol XR was the first drug she was put on. AT that time I did not know about the many side effects, so I blew it off as hormonal. Tegretol caused extreme vision problems which is why we stopped it.
 
I am currently on Tegretol XR (just started generic yesterday :( ) and my wife thinks I've had a little hair loss since I started, but I must say the family on my dad's side is known for hair loss *L*
 
Foreverdark- I just went to pharmacy today to get my Tegretol XR and becuase I had Dr write a new script, they tried to get my to pay for generic Tegretol XR which I didnt know they had one for XR. Anyways- I told them no and that I use Medicaid and they won't pay for the generic of Tegretol XR. SO they fixed the problems. If I were you, tell your doctor you only want brand name and to write it on the script paper. You can choose which you would prefer.

Take care,
Crystal
 
Foreverdark- I just went to pharmacy today to get my Tegretol XR and becuase I had Dr write a new script, they tried to get my to pay for generic Tegretol XR which I didnt know they had one for XR. Anyways- I told them no and that I use Medicaid and they won't pay for the generic of Tegretol XR. SO they fixed the problems. If I were you, tell your doctor you only want brand name and to write it on the script paper. You can choose which you would prefer.

Take care,
Crystal

Crystal11: They didn't even give me a choice, they just filled it (and I am on medicaid too). The pharmacist said there is no difference and no different side effects. I started it Wednesday. I usually don't have a problem with generic medications but now that it comes to my Epilepsy, I'm not sure what I think about em *L* :D
 
Foreverdark- I would really ask your doctor to write a new script with "depense as written" or "brand only" on it. I'm going to have to do the same thing in two months. The same thing happened to me yesterday- makes me mad.
Some people are perfectly fine on generics. My heart medication for tachycardia is generic and it works just fine- its fast acting and I don't see anything wrong with it. But problems with generics are that not just one company makes it. You might get Company A one month then Company T the next and you may or may not notice any changes in seizures or side-effects. Just watch out for those type things and if you don't mind taking it- then its not totally a bad thing. Again, some people do just fine on generics. I found out that I don't do so well.
Talk to you doctor about getting it changed if you wish- I really don't like that pharamacies can just change it without letting you know. They wanted to charge me $88 yesterday and I said no. So they had a little meeting back there and then came back to tell me they would fill it with Tegretol XR brand name only. But I still have to tell my GP to write a new script with brand only.

Please take care-
Crystal
 
While I'm a "newbie", I would first ask you to consult your pharmacist. I mean no disrespect to anyone here. I've had to "go it alone" here and find out much information on my own. One of my key allies is my pharmacist when I want information about any Rx side effects.
 
Some pharmacists don't want this responsibility. I have a friend who is one, and she gets asked questions all the time, and she is quite reluctant to answer. She says people are over medicated, and no one could ever know what the side effects of multiple meds will do to any one individual. Russian roulette IMO
 
True. Everyone's metabolic rate is different. I have access to a pharmacopoeia with all the side effects of any Rx. While I don't understand everything, it has given me a lot of useful information. (The drs. & pharmacists have these pharmacopoeias for Rx information.)
 
Hi! I am new to CWE but I wanted to answer your question as well. I have been taking Tegretol for about 20 years. It has caused a lot of hair loss with me. I am also having many other side effects from it too and will be going to my doc next week to discuss other options. I hope this helps!
 
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