Aripiprazole - Abilify

leokitten said:
Benzos are total shit and are so hard to get off of.
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I have sometimes wondered about the large increase in reported cases of ME in the late 1980s and whether there was any relationship to the fact that, at least in the UK, I don't know about elsewhere, GPs seemed to have got large numbers of female patients dependent on Valium and Librium, supposedly for depression and anxiety, and the problems of long term prescribing were being recognised.

There would have been a double effect of these patients no longer being concealed, and also the problems associated with coming off these medications.

EDIT my evidence is purely anecdotal.
 
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leokitten said:
Klonopin is just like all the other benzos, some are stronger, some longer lasting, but they all act on the same GABA receptors. Benzos are total shit and are so hard to get off of. They have a laundry list of side effects and long term effects. They also cause long-term intractable depression that sometimes is permanent even after stopping. Benzos even cause negative immune system changes long term that should be worrisome for ME sufferers.

I’m pretty sure ME doctors give benzos to battle the sleep problems. Not the benefit / risk ratio is worth it.
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Yes, that was it, to help with sleep, which in ME is sometimes so dysfunctional. Our family member simply could not fall asleep: we tried sleep machines, meditation, breathing, yoga, you name it, and then finally that monster Klonopin was prescribed for sleep. Of course, the doctors don't monitor the patient, they just represcribe the stuff, and then the long term effects set in. And of course, the Benzos wear off and then more is prescribed. And this Klonopin has been offered by every single ME doctor that I know and saw. They also often stated that it was for too much firing in the brain, whatever that is. I want to know what is wrong and where. Our family member is slowly weaning off the other horror, cortisone. As for the Klonopin that is a duel with a cunning devil.

Forgive another digression: I noted that during the Covid pandemic the pollution levels have dropped: here in Montreal the traffic really slowed down to something you'd see in the 1950s/1960s. The same has happened in many parts of the world. I also noted that during the past months several severe folks with ME have 'improved' a touch. Is it possible there is some relationship?

One CFS doctor said to me, he would not try Abilify. So, I just don't know what to think.

The problem has to be found, that is the core issue here.
 
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Jaybee00 said:
There is no push. People are trying it and getting better. If you don’t want to try it that is your prerogative. Be aware that there are also many health risks associated with untreated MECFS. People die from MECFS.
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Dear Jaybee, Please please please, we have been on this harsh dark road for a very long time. My talented daughter's life was destroyed. We travelled the world looking for help. We tried so much stuff, your jaw would drop--because CFS doctors were using these items. They would help briefly, at times for a few months, and then a crash from hell would ensue. I am just worried if this is a repeat. Of course, if this drug works, perhaps something can be found without the side effects, and folks can all get well. Best wishes.
 
Some meds stopped working after a while, but I didn't find that this ended up making me worse overall. Specifically, valtrex worked brilliantly for a couple of months then it stopped working. Similarly Arcoxia worked at a more mild level for a while, now it doesn't really do much for me anymore.

I won't pin any bad stuff on MECFS doctors unless they absolutely forced something on a patient against their will. In my opinion, it is incumbent on patients to do their own research.

For Abilify there is potential concern over tardive dyskinesia for long-term use, especially among elderly patients. If in the small chance I get TD, then I knew the risks going in and my decision was based on that the small odds of TD were outweighed by having something resembling a more normal life. Basically all drugs will have side effects. There are many drugs available for chronic diseases such as MS and RA--they all have side effects--there are no miracle cures for most chronic diseases.
 
Perrier said:
The problem has to be found, that is the core issue here.
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We don't know the core issues of most chronic diseases, even common ones that have seen millions of dollars of research. Even in COVID-19, where we know the exact trigger, we are still clueless with how to treat chronically ill patients. I like the ambition of Ron Davis to try to get at the core pathology, but realistically speaking we are far away. It is much more likely that "symptomatic" treatments will come first, like for other diseases.

Having said that, hopefully Abilify is being tested in the nanoneedle, if it shows a response there's a small chance it could even treat the core pathology.
 
[QUOTE="Jaybee00, post: 293171, member: 5

I won't pin any bad stuff on MECFS doctors unless they absolutely forced something on a patient against their will. In my opinion, it is incumbent on patients to do their own research.
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Dear Jaybee, no one is trying to 'pin any bad stuff on MECFS doctors.' They offered what they had, and what they were trying out on patients. But they often minimised the secondary effects. For instance, hydrocortisone was a great favourite. There was even a book about the benefits of hydrocortisone, the chap's name escapes me but it will come to me later. So, I knew many who took hydrocortisone. What else do you do when you cannot get up, and you are desperate. You try things. So, there was a benefit for a while. But now there is osteoporosis. And now there is no benefit to the hydrocortisone. I know half a dozen people on this substance. I won't labour the point. Yes, patients need to do their own research, but we have to trust professionals also to be ethical. And I don't think anyone tried to do harm, but harm was done. Anyhow, best wishes to you.
 
Perrier said:
Yes, that was it, to help with sleep, which in ME is sometimes so dysfunctional. Our family member simply could not fall asleep: we tried sleep machines, medication, breathing, yoga, you name it, and then finally that monster Klonopin was prescribed for sleep. Of course, the doctors don't monitor the patient, they just represcribe the stuff, and then the long term effects set in. And of course, the Benzos wear off and then more is prescribed. And this Klonopin has been offered by every single ME doctor that I know and saw. They also often stated that it was for too much firing in the brain, whatever that is. I want to know what is wrong and where. Our family member is slowly weaning off the other horror, cortisone. As for the Klonopin that is a duel with a cunning devil.
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To me that’s just an inexcusable and lazy practice of medicine by these doctors. There are many other sleeping meds that are not benzos or their equally horrible cousins the z-drugs.

There are many other drugs for sleep and these doctors just have to research and think for once. Other sleep drugs can have far fewer side effects and virtually zero long-term effects.
 
@Perrier and @Jaybee00 I totally understand the frustration on both sides.

Most of treatments over the years haven’t usually been harmful for trying them, except for the few that can like cortisone, benzos, Rituximab in some, and a few others.

But we are in dire straits with this illness, lives destroyed by it and living with the symptoms having complete control over you every minute of every day for years is devastating enough that you even forget at times that it also destroyed your previous life.

So in this terrible situation we have to take risks, and most pwME do, because where they are day to day is so very bad that the small risk a drug could make you worse doesn’t matter as much to them.
 
leokitten said:
@Perrier and @Jaybee00 I totally understand the frustration on both sides.

Most of treatments over the years haven’t usually been harmful for trying them, except for the few that can like cortisone, benzos, Rituximab in some, and a few others.

But we are in dire straits with this illness, lives destroyed by it and living with the symptoms having complete control over you every minute of every day for years is devastating enough that you even forget at times that it also destroyed your previous life.

So in this terrible situation we have to take risks, and most pwME do, because where they are day to day is so very bad that the small risk a drug could make you worse doesn’t matter as much to them.
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And this, dear LeoKitten, is why I am in a rage around the clock. They physicians/scientists/researchers simply do not really live with the patient's reality in the forefront. Even I, as a parent, watching this day to day, do not really in any profound way penetrate the true reality of being locked up in a room, unable to live normally, suffering around the clock. I get to go to the shops, work in the garden, etc. My daughter just glances down at me from a balcony she cannot leave. I no longer know at whose door to plead.
 
Perrier said:
My daughter just glances down at me from a balcony she cannot leave. I no longer know at whose door to plead.
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At this moment in time I'd suggest cultivating a relationship with a sympathetic person in the media. Bringing real and accurate awareness can only benefit us in the long run. I know that's not a fast solution for any specific person but IMO that is the place to gain leverage.

I'm sorry that your daughter suffers and that you have to watch. I know how horrific this all is. Making the government aware to the point of committing money there is hope.
 
Snowdrop said:
At this moment in time I'd suggest cultivating a relationship with a sympathetic person in the media. Bringing real and accurate awareness can only benefit us in the long run. I know that's not a fast solution for any specific person but IMO that is the place to gain leverage.

I'm sorry that your daughter suffers and that you have to watch. I know how horrific this all is. Making the government aware to the point of committing money there is hope.
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Thank you dear Snowdrop. You are correct, and this is what the point of exposing the privacy of Whitney was-- For the world to see the suffering. At this moment, however, here in Canada, all the attention is on Covid. The numbers are skyrocketing again, and things are closing down again, restaurants, and gyms, and folks are told to stay only with the immediate family they live with. No one, at this moment, will take an interest in this, and the name chronic fatigue, incites nothing but contempt. As one emergency doctor once said to us when we stated that our family member had this condition: 'I'm tired all the time! I never get to sleep.' But your suggestion is spot on. I had hoped that more prominent folks would promote this condition, as Whitney is in California where there are many well known folks, and his Dad is so accomplished. There was actually another family here who did go to the media before the pandemic. They wrote up the story and end of story. Best wishes. Stay as well as possible.
 
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Interesting Reddit thread on Abilify today -

Seeing again mentions of modest, non curative, improvement from 2 users, and tolerance or a loss of improvement from a second user. A third user again mentions the Abilify/Celebrex combination, which has been suggested to reduce or prevent tolerance.

The first users clearly stated it was not acting as a stimulate or energy giver, rather as a fatigue reducer.

It is interesting to see Abilify pop up from a wide variety of users and platforms, varying doses (some have been on it for other reasons, others on low-doses at Stanford), men, women, variety of ages and disease severeties. And for me personally, corresponding to an antecodte I read over 4 years ago.

The dose thing is a bit confusing to me as I would expect a dose-response curve a bit differently. But, of course all of this isn't in a controlled environment so I'm taking it all wiht a grain of salt. For example, some reports could be from the same users on different platfroms. But it certainly has peaked my interest.

Really hoping Stanford can get a good, proper study done as fast as possible.
 
Since Whitney announced improvements from abilify I have seen more and more inquiries about it.

The attention given to treatment responses of high profile people concerns me.

I understand the urgency to get better and the urge to try what’s available.

However, what I have heard from Stanford patients is that they are given a “hard sell” on abilify and a clinical study has been discussed for a while but not started. Some patients have reported benefits from the medication but others have reported a variety of side effects.

I am not a patient of the Stanford clinic but did take low dose abilify—prescribed to augment an antidepressant. Abilify caused intrusive repetitive suicidal thoughts which stopped as soon as I discontinued taking it. I would never take it again.

Dr Davis’ research lab at Stanford and the Stanford Me/cfs clinc are two separate entities. Since Dr Montoya’s abrupt departure from the clinic there’s been discussion of reorganizing or redesigning the clinic, but that hasn’t happened yet.
 
Thanks for sharing your experience @vsou. Unfortunately with the snowball effect that happens around improvement stories and recovery stories. Information about people who have had negative effects and or no improvement often seems to be overlooked and ignored.
 
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