Worried about Lamotrigine?

[ForgetRegret]

Hey guys,

So I don't know if anyone is on this medication but I'm really hesitant to use it.. First I'd like to consider myself to be very natural when it comes to my illness ( depression, bpd, bipolar II apparently ) I've been coping with these issues with no meds since it all started 9 years ago and I'm still here so I must have been doing something right..

It's really frustrating for me because my whole life I've never showed any signs of bipolar- just depression. Then there was a period of events which occured in december and I went to the hospital- maybe the way I was acting seemed manic , but the doctor I'm seeing now is just basing information from that one time I was in- so she thinks I have bipolar but I'm 99% sure that I do not and it's frustrating cause she won't listen and I don't know what to do about that.

So lately I've just been severely depressed the past few weeks and today I talked to her and she gave me a perscription for lamotrigine. I've heard stories that this drug causes this bodily rash and can sometimes be very serious- plus I'm worried to take it for an illness that I don't even have.. and she won't perscribe normal anti-depressants because apparently I'm bipolar.. ugh this is just so frustrating.. I wish there were just tests she could do to figure out the truth.. Anyways sorry I'm just worried about taking this medication.. and wondering maybe I need to see someone else? Any advice would be greatly appreciated

[Hermitt]

That doesn't sound good FR. I also was given, on a few occassions, meds I didn't think I needed either.

You have to remember that doctors do what they were taught. They are taught to drug you up. I trusted doctors many times to do right by me and whatever was wrong at the time and 9 times out of 10 it as WRONG. I think they use the ShotGun approach when prescribing meds, just throw whatever is popular at the time at you and hope for the best.

I went into a psychosis once because I was given something I was severely allergic to and it almost cost me my life.

If you have serious reservations about what you have been given, don't take it. Just think how stupid and used you will feel when these horrible side effects show up. YOU have to live through them not the doctor. And in my case when I tried to tell them about what was happening to me they didn't really seem to give a flying crap.

[danni]

Hello ForgetRegret…

You sound very concerned about the prescribing of this medication and the diagnosis you received in the hospital. Would you feel better getting a second opinion? If the answer is “yes”, then you should.

You need to trust your care providers and this may help give you peace of mind that you were accurately diagnosed or confirm your feelings that you were not so you could start a more appropriate treatment plan. I don’t think that psychiatrists can all be lumped into the category of drug pushers. There are good and bad in every profession under the sun and every stage in between. Doctors are no different. We are also all human beings and unfortunately we all make mistakes.

There is a possibility of side effects to every medication. Heck….even aspirin and vitamins can have side effects J That’s why good communication with your doctor is necessary to make sure the medication is doing what it is supposed to do and that these side effects are minimized. Prescribing meds is not a perfect science and sometimes it takes some trial and error to find the med/combination that works the best for each individual. We all can respond differently to the same medication.

The med you were prescribed is in the class of anticonvulsants but is also used to stretch out the time between episodes of depression or mania. In my experience, other meds are prescribed to actually treat the depression/mania but this med will increase the time between the episodes.

May I ask if you are also seeing a therapist? More success is usually seen when meds and therapy are used together than taking meds alone.

Take care

[Hermitt]

Watch out for those anticonvulsives. That's what almost did me in.

Trial and error? Shouldn't that have been done BEFORE the drug was approved by the FDA?

I'd do as much reading online as I possibly could BEFORE I would even consider taking any drug. Try to talk to people who are or have taken it and see what they say.

I have found people in the health care profession to be jaded and callous to people's complaints. Dismiss them as "Crazy" or "Hypocondriac" or "ScrewBall" or "Stupid". They don't like to be second guessed and try to discredit anyone that goes against them. When in reality there IS a high percentage of doctor induced illness, Iatrogenesis

From Wiki:

" Side effects

Lamotrigine prescribing information has a black box warning about life threatening skin reactions, including Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis.[12] The manufacturer states that nearly all cases appear in the first 2 to 8 weeks of therapy and if medication is suddenly stopped then resumed at the normal dosage. Patients should seek medical attention for any unexpected skin rash as its presence is an indication of a possible serious or even deadly side effect of the drug. Not all rashes that occur while taking lamotrigine progress to Stevens-Johnson Syndrome or Toxic Epidermal Necrolysis. It is estimated that 5 to 10 % of patients will develop a rash, but that only one in a thousand patients will develop a serious rash. It is thought that one in 50,000 exposed patients may die from a rash.

Common side effects include headaches, dizziness and insomnia. Other side effects may include acne and skin irritation, vivid dreams or nightmares, night sweats, body aches and cramps, muscle aches, dry mouth, mouth ulcers, damage to tooth enamel, fatigue, memory and cognitive problems, irritability, weight changes, hair loss, changes in libido, frequent urination, nausea, appetite changes and other side effects. In very rare cases, Lamotrigine has been known to cause the dangerous drug eruptions DRESS syndrome, Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). The rash is more common in children, so this medication is often reserved for adults. There is also an increased incidence of these eruptions in patients who are currently on, or recently discontinued a valproate-type anticonvulsant drug, as these medications interact in such a way that the clearance of both is decreased and the effective dose of lamotrigine is increased. "

I was one that got "The Rash". It was even on my tongue and eyeballs. It lasted 7 weeks AFTER my last dose. I got NO sleep for the intense itching and was taking up to 24 Benedryl a day just to quiet it down a bit so I wouldn't be vomiting all the time. I was in Hell.

[Unbekannt]

A rash I think would be an allergic reaction (but I don't know the medication that has been prescribed to you) and as danni said you can get them from a lot of different things.

I was prescribed an antibiotic I hadn't taken before for a bladder infection and it caused a rash (hives first on my legs then upper body, finally the face, that's when I called the pharmacist to inquire). I got some benadril, the anti hystamine in it gets rid of it and gets you tired so you sleep it of

So I'm thinking there is always a chance of that happening and there is always a way of dealing with it. It can get quite serious but as in my case it might easily be taken care of.

The other thing is if you don't trust the prescriber. As everybody else said who responded, get a second opinion, go to somebody else and see what they have to say - especially if you feel that you are not heard, that the physician isn't listening to you.

Good luck!

[Proverbs31:28]

Personally, I think the bigger issue here is not the possible side effects of a medication, as all meds have side effects. Instead, I would be more concerned with being given a diagnosis you don't agree with. I'm not sure how BP is diagnosed but, if you feel it was incorrect in your case I'd seek a second opinion as others have suggested. It will either confirm your diagnosis or not and then proper treatment can be administered. I actually tried 2 pdocs and multiple Ts before I found the right fit for me. Perhaps a new perspective would serve you and your doctor well.

[Luna-]

I’d like to give my viewpoint on lamotrigine and psychiatric drugs in general.

Lamotrigine is used for both bipolar and for unipolar depression. It is an anticonvulsant/mood stabiliser, with a known AD (anti-depressant) action, ie it works on mood, lifting it up towards midline (normal) mood without the risk of switching you into mania if you are suspected to be BP. So regardless of whether you are BP or UniP, lamotrigine can help (if it works for you). It can be used alone or as an add-on med.

Hermitt: as regards your point:

Trial and error? Shouldn't that have been done BEFORE the drug was approved by the FDA?

I'd do as much reading online as I possibly could BEFORE I would even consider taking any drug. Try to talk to people who are or have taken it and see what they say.

When Danni says “trial and error”, what she means is that in psychiatric medicating, there is no “one size fits all”. There is no “best” or “worst” drug. Everyone’s neurochemistry differs, sometimes subtly, which means everyone’s treatment is different. There is no way to know ahead of time what will be effective for any person, so it is quite literally, a case of trial and error for each patient. If the first drug doesn’t help, you try the next. (It’s not a wild shot in the dark, there are algorithms (first-line, second-line etc) to guide a psychiatrist in the trials.)

The FDA approves a drug based on safety and efficacy (ie. it must be proven to work better than placebo). This does not imply it will work for you. It’s like saying that if aspirin does not relieve your pain, then why did the FDA approve it? What works well for one person may be very bad for another; you won’t know till you try it.

Unfortunately what happens all too often is that one person has a bad experience and then goes about warning others about how terrible the drug is. People for whom the medication may be very effective and not terrible at all, are then scared off a treatment which may make a major difference in their lives, which would be a pity. This happens especially with people who are new to taking medication and feel sceptical or worried about it. Hearing of a bad experience, like yours Hermitt, they may swear off all drugs, which may not always be a wise choice, if a medication could help them. I see this happening here. By all means listen to anecdotes, but do not take them as meaning they will apply to you, take them as information about what to look for and in the context of prevalence.

Lamotrigine (Lamictal, Lamictin and many generic names) CAN cause a rash, and very rarely, the rash can be fatal. (Of course if this happens to you, then ‘very rarely’ is besides the point.) But there is no reason to be alarmist about it, or the other SEs. The rash does not appear like lightning from a clear sky and the rate of serious rash is, as Hermitt quoted around 1 in a 1000; pretty safe odds. The incidence of rashes is minimised by beginning on a low dose and ramping up very slowly, and if you notice a rash, you discontinue (let your pdoc know). Typically you begin at 25mg and move up in 25mg increments over a specified interval to 100mg and then in 50-100mg increments to the desired dose.

Just so you have another point of view, I have been taking lamotrigine for a year and a half. I’m on a fairly high dose of 400mg. I have found it to have no discernable SEs (side-effects) in me at all and very easy to take. It’s great and I’m happy taking it, in a combo with three other meds. (I’m BP, very much on the depressive side and all my 4 drugs have AD action.) Incidentally, I also took it together with valproate with no ill effects, you just halve the dose of lamotrigine.

Bear in mind that lists of SEs of drugs are always extensive, as the drug company is required to report every adverse event of every patient during the time of their clinical trials, some of which may not even be related to the drug. Very few happen to one person and people really get unduly alarmed. I worked in clinical trials for the last 7 years and we saw very few.

Obviously it is up to you whether to take it or not and there’s no reason for me to try and persuade anyone to take it, but I wanted to say that you don’t have to have BP to take it, and the rash is not the big bogeyman it is made out to be. If you get it, you stop, so if you know to look out for it, the danger is negligible. If it was that dangerous, the FDA would not have approved it. If your SEs are intolerable then the drug may not be for you.

It is always a good idea to read up about and research what you’re taking (I always do), but do it with some discernment. IMHO if your pdoc prescribed it, it is worth a try; if it doesn’t help, you simply stop. Of course this is entirely up to you.

[Hermitt]

Cleverly disguised as a responsible adult.

[Lindamomof7]

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[ForgetRegret]

A big thanks to everyone who responded, it is greatly appreciated!!

I get what your saying Hermitt, and I know that once people have had bad reactions to any kinds of meds it's really hard to even want to consider them again.. It's really unfortunate that it is all trial and error, since everyone is different. I usually do do a lot of research on things especially medication if I'm even thinking about taking it- I tend to scare myself too much by reading the side effects and then I start to think if I really need meds and then it;s just a vicious cycle.

Danni your right, you need to be able to trust the person who is perscribing you the meds- and in this case I don't. I'm seeing this women who's an MD and works in the Psychiatry Unit at the hospital close to my house.. She is just basing facts that another doctor had written down on a day I went in there in december.. And personally I don't think she is doing her job correctly.. In december a lot of issues happened with people who I considered friends, thought I could count on them turns out I couldn't.. I have discussed the fact that I don't believe it was bipolar and that I didn't experience most of the symptoms that people who are in their manic phase with bipolar experience.. Then she just started saying that I was probably irritable, and that's why the situations with my friends happened and that's why they left?? Excuse me.. first off that doesn't even have anything to do with what happened with my friends I remember the situations and what happened and secondly she wasn't even there so how can she say that?? I don't beleive doctors should be able to base a diagnosis from one particular moment.. Sorry I'm ranting it is just really frustrating.. I think I should just go talk to my reg doctor and ask her to refer me to someone then.. I guess an outsider's perspective..

Big thanks to you too Luna, it's good to have a positive feedback about a medication. I find I tend to freak myself out too much and then usually don't end up taking anything. What you said was very helpfull.

Linda that's really unfortunate that you have an intolerance to medication.. Must be very difficult for you.. What about herbal medications?? Maybe your body will have more tolerance to those then pills.. It's amazing that your still trying to find what works, even though your body doesn't tolerate them very well.. That's a sign that we all just gotta keep trying until we find a solution..

Again thanks everyone!!

[Luna-]

Cleverly disguised as a responsible adult.

Hi Hermitt,

Not sure I understand this? If I offended you, I'm sorry, I just don't want to see someone suffer who could possibly be helped. Not to invalidate your horrible experience at all. I had a nasty time on lithium, landed in hospital with toxicity, but still, it is effective for many.

[Hermitt]

I just hate seeing people subjected to torture. Putting a drug in a person that just makes them worse or ADDS to their suffering is just unacceptable to me under any circumstances. If you can't help someone then leave them alone, don't "Guess".

[Luna-]

I just hate seeing people subjected to torture. Putting a drug in a person that just makes them worse or ADDS to their suffering is just unacceptable to me under any circumstances. If you can't help someone then leave them alone, don't "Guess".

I really agree with you on this, though. The point is to relieve the suffering, however that can be done. I feel a trial on a drug is an attempt to relieve the suffering. If it makes you worse, then of course you must stop it. I don't think it's kind to say 'I can't help you' just because you don't know exactly what drug the person needs (which you actually don't).

If I went to see my pdoc with my treatment resistant bipolar (meaning I have trialled many meds that didn't help) I would feel crushed and dive into despair if he said to me 'I can't help you' because we are now at the guessing stage of what to try next - and trust me, I've tried so much, we really are guessing these days. My meds are reasonably OK at the moment with frequent tweaks, so not stable, but that is no guarantee they'll continue to be effective. When you're desperate and your back is against the wall and all you can think about is suicide, that suffering is far worse than the suffering from SEs of meds. (Your reaction to Lamictin and mine to lithium excepted, of course there are circumstances under which you have to stop.)

So why not try a drug and give the person a chance, which if it doesn't work or adds to suffering, can be discontinued? We're both aiming for the same goal.