Aripiprazole - Abilify

I’m still having the same benefits since the plateauing about a month in. (To explain to those who haven’t read the posts, the benefits continued to increase on the same dosage of 0.5 mg until about a month or more into it then it plateaued and sustained) I haven’t increased dosage and still on 0.5 mg. I am close to 3 months on Abilify.

Life is good compared to before and enjoying it while it lasts, hopefully for a lot longer.

 

That's fantastic! Carpe diem!

(Well, you know, within the limits of your energy envelope!)

 

So the fun part seems to be over at my Abilify-trial. It simply stopped working, 3 days into 2mg/day. So now I am on my way down on the doses, first 1,75mg/day again. It may be a tiny hope that smaller dose might work again, but I don’t count on it.
I have gotten done quite a few things that needed to be done, that I now can enjoy.
And, when I have experienced yet another improvement, although temporary, I believe more that there are other things that may work too, and I already have some thoughts, I am very far from giving up trying find things that help.
So, looking back, Abilify worked for 2,5 months.

 

Sorry it didn’t last....

 

https://www.youtube.com/watch?v=ul1haxH_7HI

RD talks about Abilify here...sounds like they are onto something.

is this video posted somewhere else?

 

I may have been to fast reporting that it stopped, but the last week was really back to being mostly bedbound again.
But maybe 1,5mg, in fact works. Seems like that right now.
I will try not to report again before I know for sure.

 

Moved from this thread

From my experience Abilify does really truely work for me (and seems to for many others), it’s not placebo effect it’s just been too significant an improvement that’s maintained for a long time and it occurred pretty quickly after starting it.

I have a feeling that this will or already is bringing new mechanism ideas and hypotheses to ME researchers which could uncover something significant, and it wouldn’t have been possible if people didn’t self-experiment. I can’t thank enough the people who took risks and trialed treatments before me, shared their results, and showed me that maybe I should try this!

 

Moved from this thread

Abilify is a very commonly prescribed add-on to antidepressants and antipsychotic drug, so I’m not quite understanding how one would be “on your own” wrt side effects any more than any of the antidepressant or similar drug. Any psychiatrist and likely many GPs will know be familiar with the drug and it’s side effects.

 

The key thing here that I want to stress is it’s important to not mix bad doctors and studies with the treatment itself. They are independent in this case and one shouldn’t pollute one’s evaluation of the other. The study wasn’t great but that has nothing to do with Abilify.

 

Not true. There are MECFS patients in NZ with Abilify scripts from NZ doctors. Positive about this.

They are not posting here because, as I mentioned, this forum is perceived as being unfriendly (or maybe unsupportive) and anti-self-experimental. They are posting elsewhere. And there are a lot of robust, positive self-reports.

I can write more tomorrow, but the Lakers-Warriors NBA game is on now and would prefer to watch this.....

 

This usually makes good sense, but we have no idea how many different MEs or truly different ME-like diseases there are (like you said about your ME and Whitney’s) so wrt to ME I feel all bets are off when it comes to making extrapolations like this, at this point you just don’t know what could work in an amazing way until you try.

 

Must be quite down to luck though finding a doctor willing to prescribe antipsychotics off-label. In general doctors are very hesitant to prescribe anything off-label here in Finland and when they do, they feel they risk getting their license taken away. I think the situation is a bit similar in UK and northern Europe in general, so I wouldn't say it's easy to get a prescription for this.

I asked a psychiatrist who has been open with prescribing all kinds of drugs to me in the past and he said he would only prescribe Abilify to people suffering obvious psychotic symptoms like hearing voices. Yet strangely though, he has no problems with prescribing quetiapine at low dosage for sleep even though there is no evidence for that either. There seems to be some common silent agreement among doctors that quetiapine is fine off-label, but not other antipsychotics. Go figure.

 

Abilify is widely prescribed for depression and has the indication to be prescribed for depression, not only psychosis. As does rexulti, which also “works” for MECFS https://www.rexulti.com/

In fact I’d bet these drugs are prescribed more for depression than psychosis.

 

Charles Shepherd has posted a non-nuanced post warning PWMECFS against using Abilify. Others have replied that CS’s post was not nuanced, and perhaps overly alarmist.

 

ME association facebook post:



ARIPIPRAZOLE

There has been some discussion about this medication and ME/CFS on social media.

Dr CS comments

Aripiprazole (trade name = Abilify) is a powerful prescription-only drug that can be used to treat schizophrenia, bipolar disorder and major depressive illness. It is also sometimes used to treat irritability associated with autism.

As with other antipsychotic drugs, it affects the levels of chemical transmitters in the brain and nervous system - which include dopamine and serotonin. Although there are a small number of anecdotal reports appearing on the internet from people with ME/CFS who have used this drug, there have not been any proper clinical trials to assess whether it could be a safe and effective treatment for ME/CFS.

Aripiprazole has a large number of both common and potentially very serious side-effects - many of which overlap with ME/CFS symptoms.

Side-effect data from the British National Formulary:

Common or very common
anxiety; appetite abnormal; diabetes mellitus; fatigue; gastrointestinal discomfort; headache; hypersalivation; nausea; vision disorders

Uncommon
Depression; hiccups; hyperglycaemia; sexual dysfunction

Frequency not known
Aggression; alopecia; cardiac arrest; chest pain; diabetic hyperosmolar coma; diabetic ketoacidosis; diarrhoea; dysphagia; generalised tonic-clonic seizure; hepatic disorders; hyperhidrosis; hypertension;
hyponatraemia; laryngospasm; musculoskeletal stiffness; myalgia; oropharyngeal spasm; pancreatitis; peripheral oedema; photosensitivity reaction; pneumonia aspiration; rhabdomyolysis;
serotonin syndrome; speech disorder; suicidal behaviours; syncope; temperature regulation disorder; thrombocytopenia; urinary incontinence; weight decreased

MHRA/CHM advice: Clozapine and other antipsychotics: monitoring blood concentrations for toxicity (August 2020)
Following fatal cases involving toxicity of clozapine and other antipsychotic medicines, the MHRA advises that monitoring blood concentration of aripiprazole may be helpful in certain circumstances, such as patients presenting symptoms suggestive of toxicity, or when concomitant medicines may interact to increase blood concentration of aripiprazole.
https://bnf.nice.org.uk/drug/aripiprazole.html

This is not therefore a drug that should be prescribed to people with ME/CFS in our current state of knowledge

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

On Facebook, on the same public post, Dr Charles Shepherd has been answering comments. People have commented asking why he didn’t mention the Stanford trial, the fact the doses are much lower etc, he had some good answers for that:

he commented this to most of the people who asked about the trial:

“Thanks -. Yes - I have seen this retrospective study but it's not a proper randomised clinical trial. The findings do indicate that this is a drug that could be of benefit - possibly to a sub-group of people with ME/CFS. However, the only way to proceed with assessing a drug like this that is capable of causing very severe adverse reactions is though a well conducted placebo-controlled clinical trial that involves doctors with good experience in the use of anti-psychotic drugs. In our current state of knowledge it is not something that people should be asking their GP to prescribe. And I would be very surprised if any GP would be willing to do so - given the legal consequences if something did go wrong. Dr CS MEA”

also important:

“One very specific and potentially fatal side-effect, which some doctors are not aware of is the Malignant Neuroleptic Syndrome. If a patient develops signs and symptoms indicative of NMS, or presents with unexplained high fever without additional clinical manifestations of NMS, all antipsychotics, including aripiprazole, must be discontinued and urgent medical attention should be sought. Dr CS MEA”

“No. All drugs have side effects - often divided into common and not that serious and rare but more serious. This is a complex anti-psychotic drug that has the potential to cause a number of really quite serious side effects. DR CS MEA”

 

Abilify is only indicated for psychosis or schizophrenia here, maybe the US for example has classified this differently. For depression it would be possible to obtain, with a big if, as a last resort option if you have gone through all other medications, but it would still be off-label and prescribed as augmentation treatment together with antidepressants. It is very difficult to obtain in my experience at least in the Nordic countries and UK, which is why we need more research.