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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by Janet on March 1, 2000, at 18:06:59
I'm having side effects from Tegretol and my pdoc. couldn't care less. So, good-bye doc. Anyone on it ?
Posted by Sarah on March 1, 2000, at 18:12:18
In reply to Tegretol, posted by Janet on March 1, 2000, at 18:06:59
I wouldn't be too happy with that doc! No one knows your body better than yourself. I have never taken it or even know what it is, but if it doesnt work for you, it doesnt work!! Keep looking and dont give up!!
Posted by dove on March 1, 2000, at 18:55:32
In reply to Re: Tegretol, posted by Sarah on March 1, 2000, at 18:12:18
Been on it, and off it, and lots in between. What's troubling you? There is a lot of info on this site, search the RX-QX, the Tips section, and you can also search the current posts and the archived posts with the search button on the top. And, we're here on the board also. Let us know what you need.
dove
Posted by Brenda on March 1, 2000, at 18:57:55
In reply to Re: Tegretol, posted by Sarah on March 1, 2000, at 18:12:18
> I wouldn't be too happy with that doc! No one knows your body better than yourself. I have never taken it or even know what it is, but if it doesnt work for you, it doesnt work!! Keep looking and dont give up!!
Say Good-Bye Doc! I had two different psydocs in less than a 3 mo. time span. They wouldn't listen to me either. Geez - I thought that's what they're supposed to do. The 2nd psydoc I saw tried to prescribe meds for me based on an erroneous diagnosis he saw on my "fact sheet." I tried to tell him the diagnosis was wrong - and he wouldn't listen. I eventually did get it straightened out with the insurance carrier and the 1st psydoc who made the mistake. It was a clerical/coding error. I mean really - why wouldn't he listen to me? Needless to say, I wouldn't take the meds he tried to give me. Got to stay true to your own instincts and trust yourself first.
Go girl - and good luck!
Posted by saint james on March 1, 2000, at 18:58:33
In reply to Tegretol, posted by Janet on March 1, 2000, at 18:06:59
> I'm having side effects from Tegretol and my pdoc. couldn't care less. So, good-bye doc. Anyone on it ?
james here....
Help us out by telling us why you are on it asnd what side effects you are having.
j
Posted by Cam W. on March 1, 2000, at 21:36:33
In reply to Re: Tegretol, posted by saint james on March 1, 2000, at 18:58:33
Janet - Also, how long have you been taking the Tegretol. The side effects usually subside in about a month. - Cam W.
Posted by Janet on March 2, 2000, at 0:37:52
In reply to Re: Tegretol, posted by Cam W. on March 1, 2000, at 21:36:33
It seems like a lot of typing, which is hard with my tremendous tremors. I feel toxic. But I don't know if I should just let it in my system longer or what. I'm bi-polar.I was on 1500 mg of Depakote ,but I had tremors among other side effects, so the pdr. wanted me off it. I'm also on 900mg lithium. He cut me down to 1000mg of depakote for 6 wks then 500mg for a week, plus 600mg Tegretol. So I was on 3 mood stabilizers and it only took a couple days until I felt terrible. The third day I asked a pharmacist about my symptoms and he said that was a lot of meds. I'm tired and weak,clumsy, have large pupils,blurred vision, decrease in urine, tremors have greatly increased, headache, stiff muscles in my neck and upper shoulders, mood changes, lightheadedness, constipation,and loss of appetite. I use to have diarrhea daily, from the lithium. Anyway, when I called the pdr. at 2:30, 6:30 and 7:30, he finally returned my call at 8:30. He asked, "why are you on 3 mood stabalizers"? I replied,"because you told me to." He said I should not be on 3 at once and took me off depakote totally. Now I'm on Tegretol 400mg, lithium 400mg, and Seroguel 100mg. This isn't the first time I've had a problem with him. I found a new doctor today. My appointment is in three weeks.
Posted by medlib on March 2, 2000, at 1:56:12
In reply to Re: Tegretol, posted by Janet on March 2, 2000, at 0:37:52
Janet-
3 weeks is a very long time to wait with that level of side effects. If I were you, I would call your new pdoc's office, explain that you have an IMMEDIATE problem with severe medication reactions and need to see someone NOW. Many docs are in group practice, and there are sometimes cancellations. If no one in your doc's office can see you within the next 2 days, I would go to the ER (if symptoms aren't any better in 2 days.)Perhaps Cam W will have some thoughts about your specific drugs. Good luck!
> It seems like a lot of typing, which is hard with my tremendous tremors. I feel toxic. But I don't know if I should just let it in my system longer or what. I'm bi-polar.I was on 1500 mg of Depakote ,but I had tremors among other side effects, so the pdr. wanted me off it. I'm also on 900mg lithium. He cut me down to 1000mg of depakote for 6 wks then 500mg for a week, plus 600mg Tegretol. So I was on 3 mood stabilizers and it only took a couple days until I felt terrible. The third day I asked a pharmacist about my symptoms and he said that was a lot of meds. I'm tired and weak,clumsy, have large pupils,blurred vision, decrease in urine, tremors have greatly increased, headache, stiff muscles in my neck and upper shoulders, mood changes, lightheadedness, constipation,and loss of appetite. I use to have diarrhea daily, from the lithium. Anyway, when I called the pdr. at 2:30, 6:30 and 7:30, he finally returned my call at 8:30. He asked, "why are you on 3 mood stabalizers"? I replied,"because you told me to." He said I should not be on 3 at once and took me off depakote totally. Now I'm on Tegretol 400mg, lithium 400mg, and Seroguel 100mg. This isn't the first time I've had a problem with him. I found a new doctor today. My appointment is in three weeks.
Posted by JohnL on March 2, 2000, at 3:59:28
In reply to Tegretol, posted by Janet on March 1, 2000, at 18:06:59
> I'm having side effects from Tegretol and my pdoc. couldn't care less. So, good-bye doc. Anyone on it ?
The doc's primary goal is to get you well. After all, that's what we're paying them to do. Who pays who? Getting well involves considering all variables, such as the drug's efficacy, side effects, influence on the person's daily functioning, etc. The best match drug is characterized by good efficacy and minimal side effects. I would be most unhappy with your doc. I had one just like that once. Even though Serzone was making me more and more suicidal as doses were increased and time passed, she insisted without compassion that I continue. I finally tapered down myself, got much better, and went about the search for a new doc. Best move I ever made.
Posted by Cam W. on March 2, 2000, at 6:46:55
In reply to Re: Tegretol, posted by Janet on March 2, 2000, at 0:37:52
Janet - What I think what you are describing are all side effects to Tegretol. While I have seen drug profiles that have included all three of the mood stabilizers you have mentioned, it is usually only in very refractory cases. I haven't seen the three used together since Lamictal, Neurontin, Topamax, and Zyprexa have been on the scene. While the Tegretol and Lithium do work as a combination and I can see why he has tried lower doses (side effects), maybe a different approach should have been used. The Tegretol should have been introduced slower. If the side effects you are experiencing are from the Tegretol, you would expect them to abate in 2-4 weeks. Right now the Tegretol is possibly lowering an already low blood levels of Seroquel. I am seeing Tegretol being used less and less because of it's side effects and the vast number of drug interactions it is involved in (including the increase of it's own metabolism by about six weeks). I believe that you are due for a complete reworking of your meds (starting at square one). Your mood may be unstable for a while, but a little pain for long-term gain may be worth it (you may need a psychiatrist more attuned to your situation or could give the old one a wake-up call). Good luck and keep us updated on you progress. - Cam W.
Posted by dove on March 2, 2000, at 11:55:14
In reply to Re: Tegretol, posted by Janet on March 2, 2000, at 0:37:52
I would have to agree with getting in to the p-doc sooner than three weeks! Tegretol is one tough med, and it should always be introduced slowly, and exceptionally slow when augmenting those other dosages of meds you were/are on. In reality, when Tegretol is initiated, you should be going in for blood tests, and receiving feedback on what those results are. I want to really encourage you to get an appointment in the next couple days, or see someone on-call if that's what it takes to get an open ear. I've been knocked flat on my butt by Tegretol, and that was at 300 mgs. It's not irrational for you to want answers, and it's not irrational for you to request an appointment in light of the symptoms you are experiencing. How are you suppose to function? Keep us updated on any developments or questions.
dove
Posted by Janet on March 2, 2000, at 11:58:41
In reply to Re: Tegretol, posted by Cam W. on March 2, 2000, at 6:46:55
Do you think it would be a good idea to get a blood level at this point? After all it has only been a week. He gave me a prescription to be used at two and a half weeks. But there is no date on it. I do feel a little better today. Maybe it will just take time. I'm such a whiner at home, but when it comes to facing people, I'm totally a pushover. I'll end up not even telling the dr. why I'm leaving, I know. I asked the new dr.'s secretary to call me if she has any cancellations. Does anyone care about this?
Posted by Scott L. Schofield on March 7, 2000, at 22:35:00
In reply to Re: Tegretol, posted by dove on March 2, 2000, at 11:55:14
> I would have to agree with getting in to the p-doc sooner than three weeks! Tegretol is one tough med, and it should always be introduced slowly, and exceptionally slow when augmenting those other dosages of meds you were/are on. In reality, when Tegretol is initiated, you should be going in for blood tests, and receiving feedback on what those results are.
I'm not sure if the tests you are referring to are for determining the blood-levels of Tegretol or screening for agranulocytosis. It is imperative that blood tests are performed regularly when taking Tegretol (carbamazepine) to be sure that agranulocytosis has not begun. Agranulocytosis is a condition in which the body is no longer producing enough of a certain type of white blood cell.Depakote (valproate, valproic acid) must also be screened for potentially dangerous side effects. It can induce changes in liver function, even reaching the point of hepatic failure. It is a good idea to take a blood test before beginning Depakote in order to establish values of one's baseline liver enzymes, against which future tests can be compared. Blood tests should be performed once a month or so. From what I understand, if abnormalities are going to show up, they will usually appear within the first six months. Beyond this point, the statistical risk drops quickly. It is perhaps a good idea to have a blood test every six months to monitor both the level of drug and liver enzymes.
Another possible consequence of treatment with Depakote is the emergence of thrombocytopenia - a reduction in the number of blood platelets. Platelets are the little corks that help plug-up blood leaks (stop bleeding due to wounds and form scabs). You want to make sure you have plenty of corks on-hand. The occurrence and magnitude of thrombocytopenia is a function of dosage. One should be particularly cautious once levels exceed 1500 mg/day.
- Scott
Posted by Janet on March 8, 2000, at 11:27:38
In reply to Re: Tegretol and Depakote blood-tests, posted by Scott L. Schofield on March 7, 2000, at 22:35:00
I was on Depakote for 3 and a half years usually 1500-2000mg. Tests always are fine for the levels and organs etc. Now, he took me off Depakote one and a half weeks ago and put me on the Tegretol. But for the time I was on both, I got toxic and he lowered the Tegretol from 600 to 400 mg. I'm also on 900 mg of Eskalith (lithium). Seroquel 100 mg also. Xanax sometimes also.
Anyway, the prescription says tegrotol level and CBC. for the lab. What does that cover ? He told me to get it drawn 3-15-00. Could I do it sooner and have the results sent to my internist who will give me the results over the phone and I won't have to return to the pdoc. and can go to the new one on 3-23-00 ? I have been depressed and very shakey and have headaches and my eyes hurt. Anyway, it could be worse.
Posted by Scott L. Schofield on March 8, 2000, at 13:08:23
In reply to Re: Tegretol and Depakote blood-tests, posted by Janet on March 8, 2000, at 11:27:38
> Anyway, the prescription says tegrotol level and CBC. for the lab.
Q:. What does that cover ?
A: CBC stands for complete blood count. The types of blood cells looked at include granulocytes. If you were to develop agranulocytosis (impaired production of granulocyte white blood cells), this would be reflected as a reduction in the number ot these cells found in the blood.
Q: He told me to get it drawn 3-15-00. Could I do it sooner and have the results sent to my internist...?A: For Tegretol (carbemazepine), I believe it takes ten days or so after a dose change to establish an equilibrium of the drug in the body - a balanced steady-state. To take a blood test sooner than this would render the results to be of little value.
I would be curious to know how often your doctor wants you to take a blood test to screen for agranulocytosis.
> I have been depressed and very shakey and have headaches and my eyes hurt. Anyway, it could be worse.Yeah, I say that to myself all the time. Sometimes, I even believe it.
- Scott
This is the end of the thread.
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