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Posted by sweetmarie on March 9, 2001, at 7:26:57
In reply to Re: treatment resistant depression--ditto » JohnL, posted by Shar on March 8, 2001, at 19:22:48
> My pdoc recently added .5 mg Risperdal to my cocktail of wellbutrin and effexor, and klnonpin at night. It worked (I felt relief from depression) within a few days. We upped it to .75 because I was having the "feeling ok then the bottom falls out" plus "rage reactions" and doc said increase could help me stay feeling better for 24 hours, plus rage reaction could be a rx to withdrawal when .50 couldn't get me thru 24 hours.
>
> BTW, I have not felt this good in years. Years! It is incredible. Zoloft also worked well for me, but pooped out. I am praying this will not poop out.
>
> Shar
>
>
>
>
> > I sound like a broken record because I say this so often, but as I see it there are a small handful of drugs that could prove very helpful to you. None of them have yet been tried. The only reason I suggest these drugs is because they have proven to be helpful to quite a few folks here that have had trouble with more straight forward treatments. Including me.
> >
> > The broken record drugs I'm referring to are Zyprexa, Amisulpride, Adrafinil, Risperdal, or any combination of two of them (not Zyprexa+Risperdal together though). Any of them, or any combination of them, seem to work especially well with a little bit of an SSRI in the background.
> >
> > The drugs you are on or have tried are far more harsh than any of these drugs I've mentioned. Since you can handle the side effects of the other drugs, then the ones I mentioned will seem like candy. Except for one thing. They will probably work.
> >
> > There are various theories as to what causes depression. The most popular one is a deficiency in neurotransmitters. Increasing them is what antidepressants do. You have pretty much exhausted that theory in your case. Time to explore other ones. That's where the drugs I mentioned come into play.
> > JohnYou are right I haven`t tried any of the drugs you mentioned (unless of course they go by different names here in the UK, but I didn`t recognise any of them). As I said in an earlier posting, this specialist whose care I will be under when I go for treatment at the hospital he works from, is trying me on Venlafaxine, Mirtazapine and Lamotragine (which I am already on, but he is `upping` the dose quite considerably from 25 mg to 250 mg). I am to be staying in hospital until `better`, in other words, it is an open-ended stay. What I imagine he`ll do is explore other options after this intial treatment - if it doesn`t work, and obviously I sincerely hope it does. I don`t know how much input I will be given in my treatment; my consultant encouraged me to be involved, and I found out about medications for myself, which we then tried. However, as an expert, I doubt if he will welcome the same involvement. One thing that I haven`t mentioned is that when I first sought medical help (11 years ago now), I was given Dothiepin. This worked almost 100%, and I couldn`t believe the quality of life it gave me - I hadn`t EVER felt like that. I discontinued the drug after a year, and the symptoms immediately recurred, so I went back onto it. This time, though, it did absolutely nothing at all, despite persisting for about 18 months at every dosage. I don`t know really why I mention this, but it has always struck me as odd and extremely frustrating, i.e. I wish I`d stayed on it. It`s just a `wait and see` situation again, but I guess that being in a unit that actually specialises in `difficult to treat` depression will mean that I am in the right place.
Posted by jrw on March 9, 2001, at 11:13:34
In reply to Re: treatment resistant depression--ditto » Shar, posted by sweetmarie on March 9, 2001, at 7:26:57
Marie,
Sounds like you are doing the right thing, and
going to the right place. I hope it helps. I know
how frustrating it is when a drug that once
helped a lot no longer does...last fall, I had a
couple of strange days when Prozac, which had
once helped some, made me actually feel good for a
couple of days. It was amazing. I was thinking,
'Is this how other people usually feel?'I wish you the very best and am pulling for you.
J
> > My pdoc recently added .5 mg Risperdal to my cocktail of wellbutrin and effexor, and klnonpin at night. It worked (I felt relief from depression) within a few days. We upped it to .75 because I was having the "feeling ok then the bottom falls out" plus "rage reactions" and doc said increase could help me stay feeling better for 24 hours, plus rage reaction could be a rx to withdrawal when .50 couldn't get me thru 24 hours.
> >
> > BTW, I have not felt this good in years. Years! It is incredible. Zoloft also worked well for me, but pooped out. I am praying this will not poop out.
> >
> > Shar
> >
> >
> >
> >
> > > I sound like a broken record because I say this so often, but as I see it there are a small handful of drugs that could prove very helpful to you. None of them have yet been tried. The only reason I suggest these drugs is because they have proven to be helpful to quite a few folks here that have had trouble with more straight forward treatments. Including me.
> > >
> > > The broken record drugs I'm referring to are Zyprexa, Amisulpride, Adrafinil, Risperdal, or any combination of two of them (not Zyprexa+Risperdal together though). Any of them, or any combination of them, seem to work especially well with a little bit of an SSRI in the background.
> > >
> > > The drugs you are on or have tried are far more harsh than any of these drugs I've mentioned. Since you can handle the side effects of the other drugs, then the ones I mentioned will seem like candy. Except for one thing. They will probably work.
> > >
> > > There are various theories as to what causes depression. The most popular one is a deficiency in neurotransmitters. Increasing them is what antidepressants do. You have pretty much exhausted that theory in your case. Time to explore other ones. That's where the drugs I mentioned come into play.
> > > John
>
> You are right I haven`t tried any of the drugs you mentioned (unless of course they go by different names here in the UK, but I didn`t recognise any of them). As I said in an earlier posting, this specialist whose care I will be under when I go for treatment at the hospital he works from, is trying me on Venlafaxine, Mirtazapine and Lamotragine (which I am already on, but he is `upping` the dose quite considerably from 25 mg to 250 mg). I am to be staying in hospital until `better`, in other words, it is an open-ended stay. What I imagine he`ll do is explore other options after this intial treatment - if it doesn`t work, and obviously I sincerely hope it does. I don`t know how much input I will be given in my treatment; my consultant encouraged me to be involved, and I found out about medications for myself, which we then tried. However, as an expert, I doubt if he will welcome the same involvement. One thing that I haven`t mentioned is that when I first sought medical help (11 years ago now), I was given Dothiepin. This worked almost 100%, and I couldn`t believe the quality of life it gave me - I hadn`t EVER felt like that. I discontinued the drug after a year, and the symptoms immediately recurred, so I went back onto it. This time, though, it did absolutely nothing at all, despite persisting for about 18 months at every dosage. I don`t know really why I mention this, but it has always struck me as odd and extremely frustrating, i.e. I wish I`d stayed on it. It`s just a `wait and see` situation again, but I guess that being in a unit that actually specialises in `difficult to treat` depression will mean that I am in the right place.
Posted by JahL on March 9, 2001, at 13:03:13
In reply to treatment resistant depression, posted by sweetmarie on March 7, 2001, at 14:29:45
> I suffer from (severe chronic `double`) depression, which has proved VERY difficult to treat (I`ve had Tricyclics, SSRIs, an MAOI (Nardil), ECT, Maclobomide, Reboxetine, L-Tryptophan, Venlafaxine, and different permutations. I am currently on Nardil, Trimipramine, Lamotragine and Epilim to no effect). I`ve been referred to a specialist in `difficult to treat depression`, who plans to put me onto Venlafaxine, Mirtazapine and increase the dose of Lamotragine. I don`t really know why I am posting this message; I guess that I was wondering whether anyone else out there has had similar difficulties (I have been going through a major depressive episode for the past 6/7 years now, which has been severe over the past 3. Has anyone `been` where I am now? Any success stories? Or even partial success stories? I am very ill at the minute, and feel extremely hopeless - something which grows more with every treatment failure. I have had different kinds of `talking` therapy over the past 9 years, and hope to be well enough at some stage to do CBT. Can anyone help?
Hi there.
Like yourself I'm UK with treatment-resistant double depression (+ADD+social phobia...). I've had high-dose trials of all the meds you mention, & many more besides. All w/out significant success...that was until I started Lamotrigine just over 2 wks ago. I'm only just up to 37.5mg but already the improvement has been dramatic (see 'BIPOLAR EXPERT' thread 4 details).At yr current 25mg dose I can almost *guarantee* (tho' definitely no expert) you won't feel significant remission of yr depression. The proposed 250mg will give Lamotrigine scope to work it's magic (I'm biased).
You are fortunate to have found such a forward-thinking UK pdoc-I can't even find one to prescribe Lamotr. monotherapy, let alone such 'power combos'. I have to order mine from abroad (tut,tut,eh steve?). It's just a shame you have to reside in hospital.
I have high hopes for the Lamotrigine (which has the most anti-depressive profile of the mood-stabilizers); you may even find the Venlafaxine+Mirtazapine become/are redundant! Your doc sounds like he knows what he's doing.
Good Luck,
Jah.
Posted by steve on March 9, 2001, at 15:33:03
In reply to Re: treatment resistant depression » sweetmarie, posted by JahL on March 9, 2001, at 13:03:13
Are you a melancholic depressive (ie no appetite, no sleep and agitation) or an atypical one (ie sleeping all the time, overeating and feeling just tired.)
If you are the former, meds like nardil etc could very well be making things worse and not better.
The two different forms of depression have opposite symptoms and functional imaging studies have shown that in one form of depression some areas are underactivated and in the other one the same areas are overactivated.
This begs the question how the same medicine is good for both manifestations. The answer is that meds seem to cause structural changes to the brain that usually allow melancholics to lead a normal life, and at the same time cause other changes which give atypicals their oomph.
However, and I think this a terrible blot on psychiatry, which I consider the most corrupted part of medicine, some can't handle the energizing properties of the SSRIs, and actually do worse on them, as my Yale educated doctor told me. Dr. Cole at Harvard estimates that roughly one out of every two hundred depressives becomes severely agitated on the SSRIs, and I would wager that there are even more people who don't go nuts, but become more depressed on them. And of course most idiot shrinks, going purely by what they learn at the symposia sponsored by pharma companies, conclude that their patients are doing worse despite, and not because of, their medicines. This in turn leads them to add more medicines, making the sitation even worse. According to my doc, the best one can do for melancholics who worsen on ssris is to take them off SSRIs and go with lamotrigine monotherapy.
Since I've just once again harped on how corrupted psychiatry has become, maybe I should give an example. When their were concerns that Prozac, which is known for giving tired depressives a "boost" might be making agitateted depressives even more anxious, perhaps to the point of becoming psychotic, Eli Lilly hired Dr. Martin Keller to 'study' the matter. Later on it emerged that Lilly and others had paid Keller $500,000 without it being reported. I think justice would have required that he be stripped of his professorship at the very least, and his medical license probably as well. Instead the only repercussion of his blatantly unethical conduct was that he was barred from giving presentations at the APA. Another barely known factoid is that the FDA seriously considered making Lilly include a warning in its Prozac information leaflet saying that Prozac had been found to worsen many forms of depression. For reasons that are somewhat opaque to me, they decided that such a warning would be too 'complicated.' Face it sports fans, the only focus of the industry is to sell their product. If it gets you well that's good, if not, or it worsens your condition, that's your problem.
> > I suffer from (severe chronic `double`) depression, which has proved VERY difficult to treat (I`ve had Tricyclics, SSRIs, an MAOI (Nardil), ECT, Maclobomide, Reboxetine, L-Tryptophan, Venlafaxine, and different permutations. I am currently on Nardil, Trimipramine, Lamotragine and Epilim to no effect). I`ve been referred to a specialist in `difficult to treat depression`, who plans to put me onto Venlafaxine, Mirtazapine and increase the dose of Lamotragine. I don`t really know why I am posting this message; I guess that I was wondering whether anyone else out there has had similar difficulties (I have been going through a major depressive episode for the past 6/7 years now, which has been severe over the past 3. Has anyone `been` where I am now? Any success stories? Or even partial success stories? I am very ill at the minute, and feel extremely hopeless - something which grows more with every treatment failure. I have had different kinds of `talking` therapy over the past 9 years, and hope to be well enough at some stage to do CBT. Can anyone help?
>
> Hi there.
> Like yourself I'm UK with treatment-resistant double depression (+ADD+social phobia...). I've had high-dose trials of all the meds you mention, & many more besides. All w/out significant success...that was until I started Lamotrigine just over 2 wks ago. I'm only just up to 37.5mg but already the improvement has been dramatic (see 'BIPOLAR EXPERT' thread 4 details).
>
> At yr current 25mg dose I can almost *guarantee* (tho' definitely no expert) you won't feel significant remission of yr depression. The proposed 250mg will give Lamotrigine scope to work it's magic (I'm biased).
>
> You are fortunate to have found such a forward-thinking UK pdoc-I can't even find one to prescribe Lamotr. monotherapy, let alone such 'power combos'. I have to order mine from abroad (tut,tut,eh steve?). It's just a shame you have to reside in hospital.
>
> I have high hopes for the Lamotrigine (which has the most anti-depressive profile of the mood-stabilizers); you may even find the Venlafaxine+Mirtazapine become/are redundant! Your doc sounds like he knows what he's doing.
>
> Good Luck,
> Jah.
Posted by JahL on March 9, 2001, at 16:56:55
In reply to Re: treatment resistant (or caused) depression » JahL, posted by steve on March 9, 2001, at 15:33:03
> > Are you a melancholic depressive (ie no appetite, no sleep and agitation) or an atypical one (ie sleeping all the time, overeating and feeling just tired.)
> > If you are the former, meds like nardil etc could very well be making things worse and not better.
> > The two different forms of depression have opposite symptoms and functional imaging studies have shown that in one form of depression some areas are underactivated and in the other one the same areas are overactivated.
> > This begs the question how the same medicine is good for both manifestations. The answer is that meds seem to cause structural changes to the brain that usually allow melancholics to lead a normal life, and at the same time cause other changes which give atypicals their oomph.
> > However, and I think this a terrible blot on psychiatry, which I consider the most corrupted part of medicine, some can't handle the energizing properties of the SSRIs, and actually do worse on them, as my Yale educated doctor told me. Dr. Cole at Harvard estimates that roughly one out of every two hundred depressives becomes severely agitated on the SSRIs, and I would wager that there are even more people who don't go nuts, but become more depressed on them. And of course most idiot shrinks, going purely by what they learn at the symposia sponsored by pharma companies, conclude that their patients are doing worse despite, and not because of, their medicines. This in turn leads them to add more medicines, making the sitation even worse. According to my doc, the best one can do for melancholics who worsen on ssris is to take them off SSRIs and go with lamotrigine monotherapy.Steve. On this one I am COMPLETELY in agreement with you (makes a change, huh?). I fit yr description of 'melancholic depressive' and found that the SSRIs, Nardil etc did indeed worsen my depression (pdocs insisted that ADs *couldn't* exacerbate depression-how ignorant can you get? Can you see why I've practically given up on them?), specifically by making me more agitated.
As your pdoc predicts, Lamotrigine has been by far the best drug so far & it's still early days.
Jah.
> >Since I've just once again harped on how corrupted psychiatry has become, maybe I should give an example. When their were concerns that Prozac, which is known for giving tired depressives a "boost" might be making agitateted depressives even more anxious, perhaps to the point of becoming psychotic, Eli Lilly hired Dr. Martin Keller to 'study' the matter. Later on it emerged that Lilly and others had paid Keller $500,000 without it being reported. I think justice would have required that he be stripped of his professorship at the very least, and his medical license probably as well. Instead the only repercussion of his blatantly unethical conduct was that he was barred from giving presentations at the APA. Another barely known factoid is that the FDA seriously considered making Lilly include a warning in its Prozac information leaflet saying that Prozac had been found to worsen many forms of depression. For reasons that are somewhat opaque to me, they decided that such a warning would be too 'complicated.' Face it sports fans, the only focus of the industry is to sell their product. If it gets you well that's good, if not, or it worsens your condition, that's your problem.
>
Posted by sweetmarie on March 9, 2001, at 17:32:20
In reply to Re: treatment resistant depression, posted by JohnL on March 8, 2001, at 17:35:42
> I sound like a broken record because I say this so often, but as I see it there are a small handful of drugs that could prove very helpful to you. None of them have yet been tried. The only reason I suggest these drugs is because they have proven to be helpful to quite a few folks here that have had trouble with more straight forward treatments. Including me.
>
> The broken record drugs I'm referring to are Zyprexa, Amisulpride, Adrafinil, Risperdal, or any combination of two of them (not Zyprexa+Risperdal together though). Any of them, or any combination of them, seem to work especially well with a little bit of an SSRI in the background.
>
> The drugs you are on or have tried are far more harsh than any of these drugs I've mentioned. Since you can handle the side effects of the other drugs, then the ones I mentioned will seem like candy. Except for one thing. They will probably work.
>
> There are various theories as to what causes depression. The most popular one is a deficiency in neurotransmitters. Increasing them is what antidepressants do. You have pretty much exhausted that theory in your case. Time to explore other ones. That's where the drugs I mentioned come into play.
> JohnI would like to really thank all that have replied to my post. It certainly seems that I am NOT the freak I thought I was. I am encouraged by what I have heard re. Lamotragine (although I have developed quite a noticeable rash on my arms, which is stated as a possible side effect of this medication, so I`m assuming that the Lamotragine is the cause; I`m not sure what to do about this - any ideas? has anyone else experienced this?). Anyway, I`ll have to wait and see ...
Posted by NikkiT2 on March 9, 2001, at 17:48:20
In reply to Re: treatment resistant depression, posted by JohnL on March 8, 2001, at 17:35:42
John,
you have to be hospitlised in the UK to get combo therapy!!! useless I know, but suggesting combos to us Brits is a waste of time, as our "wonderful" pdocs won't prescribe them!!!
Nikki
Posted by phillybob on March 9, 2001, at 18:20:32
In reply to Re: treatment resistant depression, posted by sweetmarie on March 9, 2001, at 17:32:20
< < I have developed quite a noticeable rash on my arms, which is stated as a possible side effect of this medication, so I`m assuming that the Lamotragine is the cause; I`m not sure what to do about this - any ideas?
Sweetmarie, you are an in-patient correct? The staff at the facility are aware of such, I presume? If not, notify them. From what I understand, though have not experienced this, it can be a very bad thing, so it needs to be monitored most definitely by experts.
You had said that you are "upping the dose [Lamotragine] quite considerably from 25 mg to 250 mg)." How quickly did you move up and from what dosage to what dosage? That could be the culprit, again, from what I've heard.
Others on here can likely give more input. Best wishes.
Posted by sweetmarie on March 9, 2001, at 19:29:50
In reply to Re: treatment resistant depression sweetmarie, posted by phillybob on March 9, 2001, at 18:20:32
> < < I have developed quite a noticeable rash on my arms, which is stated as a possible side effect of this medication, so I`m assuming that the Lamotragine is the cause; I`m not sure what to do about this - any ideas?
>
> Sweetmarie, you are an in-patient correct? The staff at the facility are aware of such, I presume? If not, notify them. From what I understand, though have not experienced this, it can be a very bad thing, so it needs to be monitored most definitely by experts.
>
> You had said that you are "upping the dose [Lamotragine] quite considerably from 25 mg to 250 mg)." How quickly did you move up and from what dosage to what dosage? That could be the culprit, again, from what I've heard.
>
> Others on here can likely give more input. Best wishes.Phillybob - no I`m not an in-patient yet. What`s happening is that I am moving away from Leeds (where I live), to another hospital about 100 miles away. This hospital is where the specialist I saw works from, and whilst I`m there, I`ll be under his care whilst remaining under my usual psychiatrist`s care (if you see what I mean). I saw my GP about the rash a few times, and was prescribed various things (anti-biotics, skin wash, and a cream), none of which worked. I then saw a dermatologist ho told me it was some kind of follicle thing (she gave me a name for it, but I`ve forgotten). She was actually quite dismissive, and didn`t make any connection between the rash and the medication (Lamotragine, as I think I`ve mentioned). Finally I mentioned it to my psychiatrist who said that it was very likely to be the result of the medication, and that whn I was feeling `well`, it wouldn`t bother me so much. It doesn`t actually bother me in terms of physical discomfort, but I`m very aware of it and always keep my arms covered up. This upsets me, because I feel `unsightly` because of it. My intention is to point it out to the staff at the hospital in hopes that they can suggest something I can do about it. It`s certainly a bummer, and one I could very well do without; I`ve also put on weight with my current medication (Nardil), which will I will hopefully lose when I come off it (I am reducing at the moment, in preparation for going onto the new combination). However, the 2 together (rash and weight gain) don`t do my self-image any favours. Maybe I`m being vain, but it does really bother me. Anyway, thanks for replying; hopefully I can get in seen to properly whilst I am in hospital. Cheers.
Posted by phillybob on March 9, 2001, at 19:53:59
In reply to Re: treatment resistant depression sweetmarie, posted by sweetmarie on March 9, 2001, at 19:29:50
Okay, sweetmarie, I did not want to alarm you but I thought you were in a hospital setting. Please read the following quote from Dr. Ivan Goldberg's depression central ( http://www.psycom.net/depression.central.lamotrigine.html ):
"14. Which side-effects are severe enough to force people to discontinue lamotrigine?
The side-effect of lamotrigine that most often causes the drug to be discontinued is a rash. Rashes can be mild, similar to a slight sunburn, or can be quite severe resembling a severe case of poison-ivy. The more severe the rash the less likely it is that the individual will be able to continue the medication. ALL rashes should be reported to the physicians prescribing the lamotrigine.
A rash is more likely to develop when the initial doses of lamotrigine are high or when lamotrigine is too rapidly started when someone is taking valproate.
It is important that people taking lamotrigine who develop a rash immediately contact their physician as there have been a few deaths in people who have developed lamotrigine-induced rashes."
I think the name of the deadly rash problem is Steven-Johnson's Syndrome. It does not seem that your prescribing doc is aware of this? How much of an increase in dosage has he/she prescribed for you?
Again, best wishes.
Posted by JahL on March 9, 2001, at 19:59:34
In reply to Re: treatment resistant depression, posted by sweetmarie on March 9, 2001, at 17:32:20
> I would like to really thank all that have replied to my post. It certainly seems that I am NOT the freak I thought I was. I am encouraged by what I have heard re. Lamotragine (although I have developed quite a noticeable rash on my arms, which is stated as a possible side effect of this medication, so I`m assuming that the Lamotragine is the cause; I`m not sure what to do about this - any ideas? has anyone else experienced this?). Anyway, I`ll have to wait and see ...Like phillybob says, the rash is cause for concern. The Lamotrigine PDF says to discontinue Lamot. immediately upon appearance of a rash. CamW, Sunnely et al can better explain, but there are potenially serious implications here, not least of which is the the potentially fatal Stevens-Johnson (sp?) Syndrome. The PDF warns that rashes *could* result in permanent skin blemishes.
Don't freak out, but keep an eye on the rash & speak to someone knowlegable about Lamotrigine specifically ASAP. Plenty of people have continued to take Lamot. only for the rash 2 disappear w/o trace, but you *must* get it checked out (IMO).
Good Luck,
J.
Posted by steve on March 9, 2001, at 21:52:50
In reply to Re: treatment resistant depression » steve, posted by JahL on March 9, 2001, at 16:56:55
The sad thing is that there are credible epidemiological estimates putting the number of deaths due to ssri activation at roughly 50,000. Atypicals rarely if ever kill themselves, but melancholics do, particularly when overstimulated.
As for finding competent doctors, in my experience that has been pretty hard. If you want a good critique of the dangers and untold side-effects of psychotropics, www.skepticalpsych.com or Breggin's "Your med might be your problem" are great places to start reading. I don't agree with their absolute hostility to bio psychiatry, which isn't factual, but reading about all the shenanigans, ignorance and outright lies made by paid for researchers certainly was an eye-opener.
S.
> Steve. On this one I am COMPLETELY in agreement with you (makes a change, huh?). I fit yr description of 'melancholic depressive' and found that the SSRIs, Nardil etc did indeed worsen my depression (pdocs insisted that ADs *couldn't* exacerbate depression-how ignorant can you get? Can you see why I've practically given up on them?), specifically by making me more agitated.
>
> As your pdoc predicts, Lamotrigine has been by far the best drug so far & it's still early days.
>
> Jah.
>
Posted by sweetmarie on March 10, 2001, at 6:22:05
In reply to Re: treatment resistant depression » sweetmarie, posted by phillybob on March 9, 2001, at 19:53:59
> Okay, sweetmarie, I did not want to alarm you but I thought you were in a hospital setting. Please read the following quote from Dr. Ivan Goldberg's depression central ( http://www.psycom.net/depression.central.lamotrigine.html ):
>
> "14. Which side-effects are severe enough to force people to discontinue lamotrigine?
>
> The side-effect of lamotrigine that most often causes the drug to be discontinued is a rash. Rashes can be mild, similar to a slight sunburn, or can be quite severe resembling a severe case of poison-ivy. The more severe the rash the less likely it is that the individual will be able to continue the medication. ALL rashes should be reported to the physicians prescribing the lamotrigine.
>
> A rash is more likely to develop when the initial doses of lamotrigine are high or when lamotrigine is too rapidly started when someone is taking valproate.
>
> It is important that people taking lamotrigine who develop a rash immediately contact their physician as there have been a few deaths in people who have developed lamotrigine-induced rashes."
>
> I think the name of the deadly rash problem is Steven-Johnson's Syndrome. It does not seem that your prescribing doc is aware of this? How much of an increase in dosage has he/she prescribed for you?
>
> Again, best wishes.The rash is similar to a `dry skin rash`, of the kind I have always had on my upper arms, except now it`s got worse and is more noticeable. It`s interesting that you make the Vaproate connection, as I am also taking this. However, I am coming off this - slowly decreasing the dosage until I come off altogether. Possibly this will help. I will certainly point the rash out to the psych doctors when I go into hospital (if it`s still there).
sweetmarie
Posted by phillybob on March 10, 2001, at 10:37:37
In reply to Re: treatment resistant depression » phillybob, posted by sweetmarie on March 10, 2001, at 6:22:05
< I will certainly point the rash out to the psych doctors when I go into hospital (if it`s still there). >
If you are NOT going into the hospital today or tomorrow, please inform a professional of your rash as it can lead to most unfortunate consequences (even death).
Also, to help us (those, like myself, beginning lamictal therapy) understand what factors may have contributed to causing the rash:
(1) How much of lamotrigine are you taking and what was the rate of increase in dosage?
and, (2) How much valproate have you been taking along with the lamotrigine?
Thanks for your input, sweetmarie, and I hope your rash ends up being nothing bad after all.
Posted by sweetmarie on March 10, 2001, at 13:13:55
In reply to Re: treatment resistant depression , posted by phillybob on March 10, 2001, at 10:37:37
> < I will certainly point the rash out to the psych doctors when I go into hospital (if it`s still there). >
>
> If you are NOT going into the hospital today or tomorrow, please inform a professional of your rash as it can lead to most unfortunate consequences (even death).
>
> Also, to help us (those, like myself, beginning lamictal therapy) understand what factors may have contributed to causing the rash:
>
> (1) How much of lamotrigine are you taking and what was the rate of increase in dosage?
>
> and, (2) How much valproate have you been taking along with the lamotrigine?
>
> Thanks for your input, sweetmarie, and I hope your rash ends up being nothing bad after all.Phillybob, over the past year I have been taking 25 mg of Lamotragine plus 1000 mg of Valproate. My psychiatrist - on instruction from the specialist I saw (and will subsequently be `under` during my hospital stay) put the dosage up from this (25 mg) to 100 mg, with the aim of increasing it to 250 mg. I was taking the 100 mg for a week and went up to 200 mg 2 days ago. I will then increase to 250 mg in another week. Having written it down, it seems like quite a `steep` increase. I`m not sure whether this is a good or a bad thing - I guess it must be O.K. otherwise my psychiatrist wouldn`t have done it. I`m not due to go into hospital for about another 5 weeks, but as I said before, my psychiatrist didn`t seem to think that the rash was anything to worry about. Neither did the dermatologist - mind you, I was in and out of that appointment within about 5 minutes, so I don`t know whether she made the connection (although I did tell her which medications I was taking). The rash itself is basically little spots, kind of like normal spots only smaller. They mostly have `heads` on them (sorry for being a bit graphic here). Having said all of this, my psychiatrist had only put one other patient on Lamotragine (a woman who had `discovered` it on the Net). Prior to this, she hadn`t heard of the drug. I`m not actually sure of what to do about all this; I feel like I have exhausted all my options (psychiatrist, GP, and dermatologist). What I may do, is post a question to one of the on-line psychiatric `experts`, and see what they say.
I guess that this isn`t very helpful (though at least I was able to give you dosages). I can`t remember whether I mentioned this, but as I am increasing the Lamotragine, I am phasing out the Valproate altogether. This may make a difference - I don`t know.
Anna (I feel strange calling myself `sweetmarie` - it`s the first time I have used an alternative to my real name. I got it from my favourite song - Absolutely Sweet Marie by Bob Dylan. This is of course irrelevant.
Posted by phillybob on March 10, 2001, at 16:19:40
In reply to Re: treatment resistant depression » phillybob, posted by sweetmarie on March 10, 2001, at 13:13:55
< I was taking the 100 mg for a week and went up to 200 mg 2 days ago. I will then increase to 250 mg in another week. Having written it down, it seems like quite a `steep` increase.... Having said all of this, my psychiatrist had only put one other patient on Lamotragine (a woman who had `discovered` it on the Net). Prior to this, she hadn`t heard of the drug. >
Anna, I am not a doctor, but the risks of your dose increase are not worth it, right now. You must speak with a professional who has familiarity with lamotragine. That seems to be from what I've read to be a HUGE increase and that is not good even if you were taking NO valproate whatsoever.
I myself would speak with a professional. Perhaps, someone with familiarily of rashes and this drug might suggest dropping back to 100 mg and probably even lower until the rash goes away ... all the while monitoring it closely? Even then, increases, I don't think, are recommended at only up to 25 mg per two weeks (and maybe as little as one week).
I am taking 12.5mg/day to start and will then go by 12.5mg/day increases (Jah is doing the same).
[Bob Dylan rules]
Posted by sweetmarie on March 10, 2001, at 17:40:48
In reply to Re: treatment resistant depression » sweetmarie, posted by phillybob on March 10, 2001, at 16:19:40
> < I was taking the 100 mg for a week and went up to 200 mg 2 days ago. I will then increase to 250 mg in another week. Having written it down, it seems like quite a `steep` increase.... Having said all of this, my psychiatrist had only put one other patient on Lamotragine (a woman who had `discovered` it on the Net). Prior to this, she hadn`t heard of the drug. >
>
> Anna, I am not a doctor, but the risks of your dose increase are not worth it, right now. You must speak with a professional who has familiarity with lamotragine. That seems to be from what I've read to be a HUGE increase and that is not good even if you were taking NO valproate whatsoever.
>
> I myself would speak with a professional. Perhaps, someone with familiarily of rashes and this drug might suggest dropping back to 100 mg and probably even lower until the rash goes away ... all the while monitoring it closely? Even then, increases, I don't think, are recommended at only up to 25 mg per two weeks (and maybe as little as one week).
>
> I am taking 12.5mg/day to start and will then go by 12.5mg/day increases (Jah is doing the same).
>
> [Bob Dylan rules]It`s always good to find another Bob Dylan fan.
I guess that I assumd that my psychiatrist increased the dosage the way she did because that`s what what this specialist recommended. I don`t know how I could get a proffessional opinion without speaking to the bloke himself, which I would be reluctant to do. The rash has been around since I very first started on the Lamotragine at 25 mg. It hasn`t become any worse since the dosage was increased (a week and a half ago). I`m really not sure of what to do about the increase, i.e. who to ask - except, as I said this professor/specialist whose advice my own psychiatrist is taking (if you see what I mean). It`s a difficult one. I suppose I could try to get advice from another source, e.g. another psychiatrist, but I don`t think that Lamotragine is all that widely used. I might actually ask my sister (who is a trained psychiatric nurse, and see what she says. She may be able to make enquiries at her hospital.
Anna.
Posted by phillybob on March 10, 2001, at 19:33:04
In reply to Re: treatment resistant depression » phillybob, posted by sweetmarie on March 10, 2001, at 17:40:48
Anna, sounds like a plan. Also, click on this link to another thread I posted in today for some good lamictal links in addition to the Dr. Ivan Goldberg one I posted earlier in this very thread (click on the one by the doctor as he has familiarity with lamictal):
http://www.dr-bob.org/babble/20010310/msgs/56133.html
Your sister should be able to find out what's up, though. The information is out there. It does sound better that the rash has not gotten worse since you started ... but, again, with the increase in dosage now, you should really have it monitored by someone (somehow!?) who knows what they are looking at it.
[I'm a big Wilco fan, particularly Jeff Tweedy, the lead singer, who's recently done some great solo shows ... I liken him to a future Bob Dylan ... he even sings a song about Bob Dylan's beard. :) ]
Posted by sweetmarie on March 11, 2001, at 6:18:34
In reply to Re: treatment resistant depression » sweetmarie, posted by phillybob on March 10, 2001, at 19:33:04
> Anna, sounds like a plan. Also, click on this link to another thread I posted in today for some good lamictal links in addition to the Dr. Ivan Goldberg one I posted earlier in this very thread (click on the one by the doctor as he has familiarity with lamictal):
>
> http://www.dr-bob.org/babble/20010310/msgs/56133.html
>
> Your sister should be able to find out what's up, though. The information is out there. It does sound better that the rash has not gotten worse since you started ... but, again, with the increase in dosage now, you should really have it monitored by someone (somehow!?) who knows what they are looking at it.
>
> [I'm a big Wilco fan, particularly Jeff Tweedy, the lead singer, who's recently done some great solo shows ... I liken him to a future Bob Dylan ... he even sings a song about Bob Dylan's beard. :) ]phillybob - I checked out the thing you sent. Jah seems only to be on a small dosage of Lamotragine, and doesn`t say whether this will be increased. I wonder if it will (Jah, if you are reading this, could you let me know - cheers). I`m actually quite concerned about this huge increase; the only reason I can think of, is that they are concerned that I be kept on a high level of something whilst I undergo the transition. I am really quite ill already (immobilised by the severity of the depression much of the time) The last time I came off meds altogether, I was very nearly catatonic. This may be a factor, I don`t know. Anyway, I`ll still check it out.
Never heard of `Wilco` (presumably an American band - we don`t get to hear much U.S. stuff over here). As for Bob Dylan`s beard, I always thought it was a poor excuse of a beard! (mind you I was only about 2 when he first grew it, so I didn`t have an opinion one way or the other. I prefer him without, although perhaps he should grow one now; I reckon he looks a lot like an old lady (mind you, I think he`s 60 this year).
Anna.
Posted by JahL on March 11, 2001, at 9:58:20
In reply to Re: treatment resistant depression » phillybob, posted by sweetmarie on March 11, 2001, at 6:18:34
> > phillybob - I checked out the thing you sent. Jah seems only to be on a small dosage of Lamotragine, and doesn`t say whether this will be increased. I wonder if it will (Jah, if you are reading this, could you let me know - cheers). I`m actually quite concerned about this huge increase; the only reason I can think of, is that they are concerned that I be kept on a high level of something whilst I undergo the transition. I am really quite ill already (immobilised by the severity of the depression much of the time) The last time I came off meds altogether, I was very nearly catatonic. This may be a factor, I don`t know. Anyway, I`ll still check it out.Hi Anna.
Valproate more than doubles Lamotrigine blood levels. The increase you described previously was effectively a jump from 50mg-400mg/day in just over a week! Phillybob & I wld take *8 months* to reach 400mg on our current dosing schedule! IMO (FWIW) Lamotrigine has been recklessly prescribed to you.
Phillybob is spot on when he says you must get this checked out, & dropping the dose back to say 100mg is probably good advice too.
To answer your Q, I'm now on 37.5mg/day & intend titrating upwards (weekly) in 12.5mg increments to btwn 100 & 200 mg, based on response/side-effects. If yr depression is severe, the proposed (4 you) dose of 250mg sounds reasonable.
This slowly-slowly approach shld enable me to pin-point the optimal point of benefits against side-effects, whilst reducing drastically my chances of developing the rash.
Jah.
Posted by sweetmarie on March 11, 2001, at 11:35:32
In reply to Re: treatment resistant depression » sweetmarie, posted by JahL on March 11, 2001, at 9:58:20
>
> > > phillybob - I checked out the thing you sent. Jah seems only to be on a small dosage of Lamotragine, and doesn`t say whether this will be increased. I wonder if it will (Jah, if you are reading this, could you let me know - cheers). I`m actually quite concerned about this huge increase; the only reason I can think of, is that they are concerned that I be kept on a high level of something whilst I undergo the transition. I am really quite ill already (immobilised by the severity of the depression much of the time) The last time I came off meds altogether, I was very nearly catatonic. This may be a factor, I don`t know. Anyway, I`ll still check it out.
>
> Hi Anna.
>
> Valproate more than doubles Lamotrigine blood levels. The increase you described previously was effectively a jump from 50mg-400mg/day in just over a week! Phillybob & I wld take *8 months* to reach 400mg on our current dosing schedule! IMO (FWIW) Lamotrigine has been recklessly prescribed to you.
>
> Phillybob is spot on when he says you must get this checked out, & dropping the dose back to say 100mg is probably good advice too.
>
> To answer your Q, I'm now on 37.5mg/day & intend titrating upwards (weekly) in 12.5mg increments to btwn 100 & 200 mg, based on response/side-effects. If yr depression is severe, the proposed (4 you) dose of 250mg sounds reasonable.>
> This slowly-slowly approach shld enable me to pin-point the optimal point of benefits against side-effects, whilst reducing drastically my chances of developing the rash.
>
> Jah.Now I`m really worried. I suppose that I`m reluctant to speak to my psychiatrist about this, as I don`t want hoer to think that I`m questioning her judgement. I guess that the other thing I could do is to take it into my own hands, and drop back to 100 mg myself. As I am seeing her in 4 weeks, this should be easy to do. In other words, I could go back to 100 mg for the next couple of weeks, and then up to 200 mg. I don`t want to take it further than that myself. The other thing is that I am juggling this increase with decreasing the Valproate. So, I`m coming off the Valproate at a rate of 200 mg per 5/6 days (I was on 1000 mg). It`s really bloody complicated I can tell you. I don`t like this set-up at all; I thought that the whole reason for my going into hospital was that this could all be managed there. Frankly, I feel too ill to be doing it myself. Still, that`s the way it is - and I`m perfectly capable of ringing my psychiatrist and asking her to spell it out more clearly for me. Or at least double check the report sent to her by the professor, and see what he actually says. I`m really confused.
Anna.
Posted by JahL on March 11, 2001, at 13:51:24
In reply to Re: treatment resistant depression » JahL, posted by sweetmarie on March 11, 2001, at 11:35:32
> > Now I`m really worried. I suppose that I`m reluctant to speak to my psychiatrist about this, as I don`t want hoer to think that I`m questioning her judgement.I know UK pdocs don't take kindly to patients questioning their judgement but what if you printed out a few of these posts & presented them to yr pdoc, expressing yr concern? The other thing to do is visit the GlaxoWellcome site & download the Lamotrigine PDF. This gives clear dosing guidelines (which you can print out), which do not concur with those of yr pdoc. Yr pdoc cannot argue with the manufacturer's recommendations.
If you're concurrently on VPA, Lamotrigine shld be increased by 12.5mg/week. Mine & phillybob's regimes are conservative bearing in mind neither of us takes VPA.
> >I guess that the other thing I could do is to take it into my own hands, and drop back to 100 mg myself. As I am seeing her in 4 weeks, this should be easy to do. In other words, I could go back to 100 mg for the next couple of weeks, and then up to 200 mg. I don`t want to take it further than that myself. The other thing is that I am juggling this increase with decreasing the Valproate. So, I`m coming off the Valproate at a rate of 200 mg per 5/6 days (I was on 1000 mg). It`s really bloody complicated I can tell you. I don`t like this set-up at all; I thought that the whole reason for my going into hospital was that this could all be managed there. Frankly, I feel too ill to be doing it myself. Still, that`s the way it is - and I`m perfectly capable of ringing my psychiatrist and asking her to spell it out more clearly for me. Or at least double check the report sent to her by the professor, and see what he actually says. I`m really confused.
>
> Anna.I don't feel comfortable actually recommending you independently change yr dose, however the rash is more of a concern. I can't see what damage reducing the dose wld do (except possibly inducing epileptics fits in those susceptible), whereas exacerbating the rash, which higher doses are more likely to do, wld be dangerous.
This is a toughie, Anna. Perhaps yr Lamotrigine trial is best left until you are under the close supervision of the hospital prof. As you say, you shld'nt be expected to deal with this yourself.
J.
Posted by sweetmarie on March 11, 2001, at 15:05:20
In reply to Re: treatment resistant depression » sweetmarie, posted by JahL on March 11, 2001, at 13:51:24
>
> > > Now I`m really worried. I suppose that I`m reluctant to speak to my psychiatrist about this, as I don`t want hoer to think that I`m questioning her judgement.
>
> I know UK pdocs don't take kindly to patients questioning their judgement but what if you printed out a few of these posts & presented them to yr pdoc, expressing yr concern? The other thing to do is visit the GlaxoWellcome site & download the Lamotrigine PDF. This gives clear dosing guidelines (which you can print out), which do not concur with those of yr pdoc. Yr pdoc cannot argue with the manufacturer's recommendations.
>
> If you're concurrently on VPA, Lamotrigine shld be increased by 12.5mg/week. Mine & phillybob's regimes are conservative bearing in mind neither of us takes VPA.
>
> > >I guess that the other thing I could do is to take it into my own hands, and drop back to 100 mg myself. As I am seeing her in 4 weeks, this should be easy to do. In other words, I could go back to 100 mg for the next couple of weeks, and then up to 200 mg. I don`t want to take it further than that myself. The other thing is that I am juggling this increase with decreasing the Valproate. So, I`m coming off the Valproate at a rate of 200 mg per 5/6 days (I was on 1000 mg). It`s really bloody complicated I can tell you. I don`t like this set-up at all; I thought that the whole reason for my going into hospital was that this could all be managed there. Frankly, I feel too ill to be doing it myself. Still, that`s the way it is - and I`m perfectly capable of ringing my psychiatrist and asking her to spell it out more clearly for me. Or at least double check the report sent to her by the professor, and see what he actually says. I`m really confused.
> >
> > Anna.
>
> I don't feel comfortable actually recommending you independently change yr dose, however the rash is more of a concern. I can't see what damage reducing the dose wld do (except possibly inducing epileptics fits in those susceptible), whereas exacerbating the rash, which higher doses are more likely to do, wld be dangerous.
>
> This is a toughie, Anna. Perhaps yr Lamotrigine trial is best left until you are under the close supervision of the hospital prof. As you say, you shld'nt be expected to deal with this yourself.
>
> J.I was kind of thinking along those lines myself. After I posted that last post, I spoke to my sister (a psych nurse), who basically said that I should do whatever feels O.K. for me within the framework given to me by my consultant and the professor. She suggested that I say on 100 mg for another week, and instead of going right up to 200 mg, go up to 150 mg for a couple of weeks. Then 200 mg. By that point, I should be going to go into hospital (I was given a waiting time of 5/6 weeks on Monday, which is now 4/5 weeks, which should tie in with this arrangement. As for the Valproate; I`m not entirely sure. My consultant has told me to decrease from 1000 mg to nothing in weekly 200 mg intervals. In the light of the new arrangement I`ve made with the Lamotragine, I think I`ll slow this down (maybe 200 mg decrease over a week and a half instead of a week). There is something here called `the medication helpline`, who deal exclusively with psychiatric medication questions. I`m going to give them a ring. If Im still confused, I am going to have to `bite the bullet`, and get in touch with my psychiatrist. After all, that`s what she`s there for (and gets very well paid for it, I`m quite sure).
I`ll let you know how I get on.
Anna.
Posted by JahL on March 11, 2001, at 15:42:48
In reply to Re: treatment resistant depression » JahL, posted by sweetmarie on March 11, 2001, at 15:05:20
>
> > I spoke to my sister (a psych nurse), who basically said that I should do whatever feels O.K. for me within the framework given to me by my consultant and the professor. She suggested that I say on 100 mg for another week, and instead of going right up to 200 mg, go up to 150 mg for a couple of weeks.How about staying on 100mg til you see the prof? 50mg (to 150mg) is still quite a big leap, which is in effect doubled whilst you remain on VPA.
> > Then 200 mg. By that point, I should be going to go into hospital (I was given a waiting time of 5/6 weeks on Monday, which is now 4/5 weeks, which should tie in with this arrangement. As for the Valproate; I`m not entirely sure. My consultant has told me to decrease from 1000 mg to nothing in weekly 200 mg intervals. In the light of the new arrangement I`ve made with the Lamotragine, I think I`ll slow this down (maybe 200 mg decrease over a week and a half instead of a week).
Unless Valproate is significantly helping you, it makes sense to decrease it *more quickly* since the sooner it is out of your system, the sooner Lamotrigine blood levels will drop to within safer limits.
Good luck,
J.
Posted by sweetmarie on March 11, 2001, at 16:36:26
In reply to Re: treatment resistant depression » sweetmarie, posted by JahL on March 11, 2001, at 15:42:48
> >
> > > I spoke to my sister (a psych nurse), who basically said that I should do whatever feels O.K. for me within the framework given to me by my consultant and the professor. She suggested that I say on 100 mg for another week, and instead of going right up to 200 mg, go up to 150 mg for a couple of weeks.
>
> How about staying on 100mg til you see the prof? 50mg (to 150mg) is still quite a big leap, which is in effect doubled whilst you remain on VPA.
>
> > > Then 200 mg. By that point, I should be going to go into hospital (I was given a waiting time of 5/6 weeks on Monday, which is now 4/5 weeks, which should tie in with this arrangement. As for the Valproate; I`m not entirely sure. My consultant has told me to decrease from 1000 mg to nothing in weekly 200 mg intervals. In the light of the new arrangement I`ve made with the Lamotragine, I think I`ll slow this down (maybe 200 mg decrease over a week and a half instead of a week).
>
> Unless Valproate is significantly helping you, it makes sense to decrease it *more quickly* since the sooner it is out of your system, the sooner Lamotrigine blood levels will drop to within safer limits.
>
> Good luck,
> J.Valproate is doing absolutely sod-all (and never did), so I will. I was playing it cautious; my consultant advised me to come down by 100 mg every 5 - 7 days. I decided on the 7, which I have now changed to a week and a half. I reckon I`ll stick to her original suggestion.
As to the Lamotragine, I think I`ll do what you suggest. The main thing I guess is to make a plan and stick to it. I`m not going to `fiddle` with it any more.
By the way, was it you that told me that a combination of Valproate and Lamotragine can cause a rash? If it wasn`t you, then someone said it at some point. I hope that this is true because it might mean that the rash coud clear up once I`m off the Valroate. It`s not a serious rash, and caused no physical discomfort, but it`s noticeable and I`m self-concious about it. If it gets worse, I will be ringing my consultant right away. The other thing that I thought of is that they (the team at Newcastle hospital where I will be going), may be able to get a dermatologist to look at it.
Thanks for your help,
Anna.
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