Aripiprazole - Abilify

[leokitten]

I am reading the postings on the FB page. I am very concerned to read that a few people are saying they or a family member now have 'permanent damage' from this drug, in the form of tremors, and other problems. I just don't know what to make of a drug that can do this sort of thing. Of course, the other issue is that as there is no diagnostic test for ME, it is hard to know if everyone trying this drug actually has ME, or some other malady. I just don't know what to think.

Did those family members take the ultra low dosage Abilify and get TD from that? Did they have ME and were taking low dose Abilify to treat it? Or did they have schizophrenia/psychosis/major depressive disorder and take significantly higher dosages for it? (typically 5x - 15x the dosage)

Your post is omitting extremely important information and correlations like dosage and the condition being treated by Abilify (which gives us some other info about what additional drugs they might be taking which could interfere with Abilify and increase risk of TD).

The risk of getting TD from taking 0.25 - 2 mg / day is literally unheard of if you aren’t also taking other drugs which could have negative liver metabolism interactions with Abilify, which is easy to check, and you aren’t very old. Even with people taking drugs that have a mild to moderate liver interaction and old people I have yet to read one anecdotal or published case report of it at these dosages but I’m just being on the safe side with my statement.

 

[leokitten]

In fact, at the very low dosages pwME are taking there’s significant experimental evidence that Abilify not only stabilizes dopamine but boosts dopamine signaling, which would make the risk of TD even lower, because it’s really working as a semi dopamine agonist in the completely opposite way it does at higher dosages.

 

[Perrier]

Did those family members take the ultra low dosage Abilify and get TD from that? Did they have ME and were taking low dose Abilify to treat it? Or did they have schizophrenia/psychosis/major depressive disorder and take significantly higher dosages for it? (typically 5x - 15x the dosage)
ing
Your post is omitting extremely important information and correlations like dosage and the condition being treated by Abilify (which gives us some other info about what additional drugs they might be taking which could interfere with Abilify and increase risk of TD).

The risk of getting TD from taking 0.25 - 2 mg / day is literally unheard of if you aren’t also taking other drugs which could have negative liver metabolism interactions with Abilify, which is easy to check, and you aren’t very old. Even with people taking drugs that have a mild to moderate liver interaction and old people I have yet to read one anecdotal or published case report of it at these dosages but I’m just being on the safe side with my statement.

Leokitten,
I read the FB page rather carefully--it's the FB page for Abilify. So, I am only reporting what I have read there. A few people there took Abilify for ME and a few got 'permanent' tremors. Some had other side effects. I have no other source for this information except that Face Book page on Abilify. I was also surprised that there should be permanent damage from a low dose. But you can check the FB page yourself. Look, we are all desperate for help. And yes, it is always hard on the internet. That is why I stated as we don't have a test for ME, who knows what everyone has, really. All the best, and I am thrilled things are looking up for you.

 

[leokitten]

Leokitten,
I read the FB page rather carefully--it's the FB page for Abilify. So, I am only reporting what I have read there. A few people there took Abilify for ME and a few got 'permanent' tremors. Some had other side effects. I have no other source for this information except that Face Book page on Abilify. I was also surprised that there should be permanent damage from a low dose. But you can check the FB page yourself. Look, we are all desperate for help. And yes, it is always hard on the internet. That is why I stated as we don't have a test for ME, who knows what everyone has, really. All the best, and I am thrilled things are looking up for you.

Im not on the FBK group but if it’s anything like the Reddit CFS group of which I’ve read I believe all the posts regarding Abilify, it’s really hard to tell from the user base who most likely has ME/CFS and who might be self diagnosing or has comorbid psychiatric diagnoses that they either are confusing for ME/CFS or just don’t know, and you can’t tell if they are taking Abilify for possible psychiatric diagnoses too or not, there’s a lot of clues in the posts that to me raise eyebrows.

It’s quite different there than long-term users on PR and S4ME where you have a lot more user history from people’s posts and information over the years about their symptoms etc, which I know is not foolproof, but really does add a lot more weight in my mind whether I think they have some form of ME or not.

 

[Jaybee00]

A few people there took Abilify for ME and a few got 'permanent' tremors

Sorry not seeing this. One person claimed that she heard of others getting tremors but didn’t provide evidence and did not say whether “these people” people were MECFS patients or psych patients. Can you send me a PM to indicate where exactly you saw this?

I heard second hand that one of the Bonilla patients may have had temporary dyskinesia type symptoms on withdrawal.

 

[Perrier]

Sorry not seeing this. One person claimed that she heard of others getting tremors but didn’t provide evidence and did not say whether “these people” people were MECFS patients or psych patients. Can you send me a PM to indicate where exactly you saw this?

I heard second hand that one of the Bonilla patients may have had temporary dyskinesia type symptoms on withdrawal.

If you go to Facebook, and look for Abilify for ME/CFS, a group will come up. Many of the people there are known names to ME. As I told Leokitten, I have only those conversations as a source. I just read, and observe. But if you join the group you too may be able to read about side effects. This is a digression and I don't have the facts: someone reported that Dr. Davis is trying to find some substance that will do what Abilify does without the side effects. I read comments of this ilk on PR and elsewhere. I did not wish to agitate you or Leokitten. We are all more than desperate. All I as a parent can do, is try to read as much as possible. My daughter has already sustain some harm from drugs which were prescribed. So, I
just want to learn all the facts.

PS: Indeed, there are people who are having miraculous results. That is clear. I have no idea how the percentages would look. Whereas, there are a handful that seem to have side effects and have had to stop the drug. And then there are those for whom the drug is no longer working and they are trying to pulse, I guess.

Dr Jacob Teitelbaum is now prescribing Abilify also, and he will be monitoring the 50 or so patients he has on it so it looks.

 

[leokitten]

someone reported that Dr. Davis is trying to find some substance that will do what Abilify does without the side effects.

I've been trying to tell Janet Dafoe and Ron via PR about brilaroxazine. To me so far in phase 1 and 2 clinical trials and other published clinical studies it looks to be exactly that, Abilify without metabolic and endocrine side effects. The incidence of these side effects with Abilify is directly correlated to dosage, and for sure metabolic and endocrine effects have a higher probability than things like tardive dyskinesia (TD) or more serious, though are totally reversible with lower dosage or stopping.

Of course with TD it's always going to be an extrapolation of existing reports (there are none for brilaroxazine just saying in general) because everything published is coming from much higher dosages.

We are all more than desperate. All I as a parent can do, is try to read as much as possible. My daughter has already sustain some harm from drugs which were prescribed. So, I
just want to learn all the facts.

Everything pharmaceutical has a decent probability of some serious side effects, so if you are waiting a magic compound without any significant possibility of this then you're going to wait forever. Based on experimental and clinical information I don't believe Abilify, at the very low dosages prescribed for ME, has any more risk and incidence of side effects than most antidepressants.

And one very positive thing about Abilify is that it's generic and you can easily get it as a 1 mg/ml liquid. So you can dose as low as 0.1 mg. Can't do that with most other drugs. So a person can really start very low and further minimize the risk of serious side effects while still investigating if it has efficacy against their ME.

Lately I've been saying to myself reading people's fear of low dose Abilify, what if rituximab clearly worked for a subset of pwME but, as is well known in the cancer and autoimmune disease communities, has significant potential for really gnarly side effects as well as life risking and permanent issues? Low-dose Abilify is nothing compared to rituximab, my mother has been on rituximab for over 2 years for cancer, and trust me the side effects that she and the other people at the cancer center tell me, it's pretty terrible. Not as bad as chemotherapy, but still not fun at all and pretty much everyone is experiencing significant side effects on it.

 

[Jonathan Edwards]

Lately I've been saying to myself reading people's fear of low dose Abilify, what if rituximab clearly worked for a subset of pwME but, as is well known in the cancer and autoimmune disease communities, has significant potential for really gnarly side effects as well as life risking and permanent issues? Low-dose Abilify is nothing compared to rituximab, my mother has been on rituximab for over 2 years for cancer, and trust me the side effects that she and the other people at the cancer center tell me, it's pretty terrible. Not as bad as chemotherapy, but still not fun at all and pretty much everyone is experiencing significant side effects on it.

I realise that people should be able to discuss drug options openly but I do have serious concerns about what is effectively gossip being spread on the forum.

As you know, I introduced rituximab for non-haematologic autoimmune disease and had experience directly or indirectly with hundreds of cases. I don't know what 'everyone is experiencing significant side effects' is supposed to mean but it bears no relation to my experience. Most patients are pretty unaware of any problems other than tickling in the throat for twenty minutes. Yes, there are lethal side effects but they are rare. After monitoring hundreds of thousands of cases the fear of PML looks as if it is essentially unfounded in people who do not have other major risk factors.

To be honest I am horrified by the persistent stream of encouragements for aripiprazole, especially in conversation with a parent desperate to help a minor. If we had some reelable reason to think the drug was of some use things might be different but even after the phase II trial of rituximab the researchers pleaded with people not to try it outside trials.

Tardive dyskinesia is one of the most horrible long term side effects of any drug class and when it occurs in the young is a tragedy hard to contemplate.

 

[Trish]

Thank you @Jonathan Edwards. I hope no one will take the discussion here as encouragement to try any unevidenced treatment with unknown side effects.

And that is all we have with Abilify - an unevidenced treatment, a clinic report from the Stanford Clinic that is underwhelming, that includes reports of some side effects and patients stopping the drug because of them, and that had incomplete records, some over very short time spans, and with no follow up of any patients who did not return for a second appointment.

The doctors themselves say it only provides a basis for possibly doing a clinical trial. It hasn't even reached the stage Jonathan Edwards mentioned of the Rituximab phase 2 trial, and for that the doctors were very clear that no one should use it as a basis for experimenting.

And we have a lot of social media gossip which, when you look at it carefully, involves very few patients, most of whom we know nothing about, some of whom were probably part of the Stanford report group, and some of whom seem to have an agenda to promote the drug.

That doesn't even meet the lowest tier of useful evidence on either efficacy or side effects.

 

[Andy]

This and following posts have been copied to another thread for continued discussion see this mod note.

Personally, I'm hugely disappointed whenever 'celebrities' in the ME world, especially those who have advocated against the use of treatments that rely on subjective, self-reported and inadequately evidenced outcomes, then turn around and advocate for treatments based on subjective self-reports that have an inadequate evidence base.

If we object to the likes of GET, CBT, Lightning Process etc etc on those grounds, then I believe that we should apply those objections to anything proposed as a treatment or cure, otherwise we undermine our arguments for better science.

I desperately hope that Abilify fulfils what appears to be its promise, in the same way that I hoped Rituximab would do the same, but, even if it was available to me before, I won't be taking it until a Stage 3 trial confirms its safety and efficacy.

 

[benji]

I desperately hope that Abilify fulfils what appears to be its promise, in the same way that I hoped Rituximab would do the same, but, even if it was available to me before, I won't be taking it until a Stage 3 trial confirms its safety and efficacy.

i completely understand that, and have seen many saying the same thing. Though I think differently, I was grateful that one doc in Norway offered Rituximab on the grounds of the positive phase 2 trial, I went to buy it, and were better. However it didn’t last. I would really like to try Rituximab another time, and I know of other Rituximab improvers that are would, too. But we can’t and I think it is a pity.
And I tried keto diet, with non-lasting improvement (not because of leokittens thread about it, but another expert tips).
And I now try Abilify. I don’t know the outcome of it yet.

I guess I am trying to say that I like the discussions like here, where both the pro and cons appears.

And regarding Lightning Prosess, it is a whole different game when they _knowingly_ minimize the harms that it has done, and bully the harmed from expressing their experience, to gain more money from it. It is so disgusting that I don’t have words for it.

 

[sb4]

If we object to the likes of GET, CBT, Lightning Process etc etc on those grounds, then I believe that we should apply those objections to anything proposed as a treatment or cure, otherwise we undermine our arguments for better science.

I think it's kind of like comparing apples to oranges. Objecting to GET, etc due to poor methodology is needed as in many countries this is all that is offered by the medical system and implies the disease is psychological.

This is different to patients experimenting with different treatments based on self reported anecdotes. If a ME "celebrity" advocates for certain treatments, as long as the risks are made very clear, I have no problem with. In fact I think it's good, as some of these treatments will lead to improvement in some patients. Of course some could make patients worse but as long as it's know by the person undertaking them then it's just a risk they can decide to take.

 

[Andy]

I think it's kind of like comparing apples to oranges. Objecting to GET, etc due to poor methodology is needed as in many countries this is all that is offered by the medical system and implies the disease is psychological.

This is different to patients experimenting with different treatments based on self reported anecdotes. If a ME "celebrity" advocates for certain treatments, as long as the risks are made very clear, I have no problem with. In fact I think it's good, as some of these treatments will lead to improvement in some patients. Of course some could make patients worse but as long as it's know by the person undertaking them then it's just a risk they can decide to take.

Sorry, I think it's exactly the same principle.

There are plenty of anecdotes of GET helping people with ME, yet we recommend against GET because of the poor evidence of benefit and the evidence that we do have of harm.

We do not know the potential harms involved with Abilify because no research involving pwME has been done to establish them, so it is impossible at this stage for any advocate for Abilify to make the risks very clear to anybody considering it. And we only have subjective self-reports as evidence of benefit. Other people may be happy to gamble blindly with other patients health but I'm not, and I'm very glad that this forum isn't a place to encourage it.

 

[sb4]

We do not know the potential harms involved with Abilify because no research involving pwME has been done to establish them, so it is impossible at this stage for any advocate for Abilify to make the risks very clear to anybody considering it. And we only have subjective self-reports as evidence of benefit. Other people may be happy to gamble blindly with other patients health but I'm not, and I'm very glad that this forum isn't a place to encourage it.

It is possible to let people know the risks of Abilify, as in, there hasn't been a proper study done on the long term effects of abilify in ME/CFS, that is a risk.

I am happy (actually not very happy) to make educated gambles with my health in order to try and get symptomatic improvement. It's perfectly fine that you don't want to take that approach. For those that do, people reporting their subjective self reports is very useful. Also advocating is a strange word to use. I haven't really heard anyone do what I would consider advocating for Abilify. Just people reporting their experiences. Although perhaps I am missing something.

 

[Jonathan Edwards]

Although perhaps I am missing something.

I think you may be missing something big.

There has been a long term discussion about this issue and it started elsewhere - and it is probably the main reason why we are now on S4ME.

Over a period of time it became clear that some people want to be able to make encouraging posts about treatments on forums because they see it as something that may contribute to legitimising their own illness - and specifically because that is relevant to financial support, either reimbursement for treatment or disability payments. People actually gave this as an argument for being able to discuss unproven treatments. This isn't something that in the UK people think much about I suspect but in countries where insurance providers dominate it seems to be a big issue.

I have every sympathy for people who need financial support for disability and are not getting it. However, if the need to get financial support leads to making encouraging remarks on forums about untested treatments, which in turn is quite likely to lead to others trying the treatments and some coming to harm then I don't think it can be justified. A number of people tried rituximab having heard about it on forums and some reported being significantly worse after. The spinal surgery issue is a bit different but it seems that several people have had that as a result of discussions on internet groups and all of them are likely to have suffered significant harms.

The real world is a complicated and sometimes not very pretty place. I do not know why people keep posting about treatments clearly trying to justify to others their experimental use by focusing on arguments in favour. But I think it would be naive to think it is just harmless enthusiasm.

I agree with Andy that the principles are exactly the same as for CBT and GET. Arguing that things are different because one lot imply a psychological base just set the advocacy community up for being ridiculed and ignored.

 

[sb4]

You are saying that people are posting false or exaggerated stories of getting better with certain treatments in order to try and prove to insurance companies that they have a legitimate disease? I wouldn't have thought those companies accept that as a form of evidence, instead looking for what a doctor says.

 

[benji]

Also advocating is a strange word to use. I haven't really heard anyone do what I would consider advocating for Abilify. Just people reporting their experiences.

Well, one could perhaps think that @leokitten was advocating in this thread in the last two pages. But then, it has resolved now, also other people voiced their opinions. I learn something every page of this discussion, lastly on the origin of this forum.

Edit Took away one word

 

[sb4]

Well, one could perhaps think that @leokitten was advocating in this thread in the last two pages. But then, it has resolved now, also because other people voice their opinions. I learn something every page of this discussion, lastly on the origin of this forum.

Fair enough. I was thinking of advocacy along the lines of a doctor saying "if you have ME you should probably take abilify".

 

[Jonathan Edwards]

You are saying that people are posting false or exaggerated stories of getting better with certain treatments in order to try and prove to insurance companies that they have a legitimate disease? I wouldn't have thought those companies accept that as a form of evidence, instead looking for what a doctor says.

No I said nothing about false or exaggerated stories. I was talking about constantly trying to argue the benefits rather than the downsides of an unproven therapy in a way that we can reasonably assume has a risk of inappropriately encouraging others.

Certainly the insurance companies will look for what doctors say but one needs to follow the trail on this. The sort of doctors who prescribe unproven treatments make money out of people who are happy to try them. The more people encourage each other to try them the more it is in the doctors interest to talk up the therapy in ways that might encourage insurance companies to reimburse. That might be presenting half-baked communications at professional meetings or publishing poor quality studies and so on.

Insurance companies are very happy to go along with stuff that isn't properly tested because the more doctors prescribe the more there is for people to claim on and so the more justification for putting premiums up. Insurance companies actually love having to dole out money if it means it legitimises racking up premiums. After all the more expensive medical care is the more money insurance companies stand to make.

So there is a nice friendly collaboration between doctors who prescribe things they shouldn't or do operations they needn't and the insurance companies. I know quite a lot about that because I have an ear to the litigation situation as a court witness.

Maybe this is irrelevant but the fact that people on forums have openly used the financial side as justification for being free to post stuff on unproven meds makes me think that we have to be quite careful if we want a forum that is there for everyone's benefit.

 

[sb4]

That is interesting and I am sure that is going on at least some of the time, however it is just another risk you have to take into consideration.

If I were to try an experimental, unproven treatment tomorrow, and gain a large improvement in symptoms; first I would wait a while and try to tease out if it really was the treatment or if it will hold out. Then after a while I would post about it here, on PR, and maybe elsewhere. It is then up to the reader to decide whether the treatment was actually effective, placebo, random remission, etc.

Would I be right in saying this forum would prefer I not post it, should that be the case? The reasons being it is unproven and could encourage others to try it which then could make them worse.