I am going to start this blog with a spoiler! I am still trialing this medication and building up the dosage but I can confirm I have seen some improvements, which I have talked about it more detail further down this blog
What is Abilify?
- 💙 Abilify is the trade name for Aripiprazole is usually used as an antipsychotic drug and sometimes used to treat irritability linked with autism.
- 💙 Abilify affects the levels of dopamine and serotonin transmitters in the brain and nervous system.
- 💙 It is thought that low doses of Abilify has a pharmacological effect on brain chemical transmitters to enhance dopamine production. and that this could have a beneficial effect in ME/CFS. There is no clinical trials or large scale scientific evidence at present to support this theory in ME/CFS.
- 💙 There was retrospective Stanford study which analysed the symptoms of 101 patients before and after using a low dose of Abilify. The trial was not placebo-controlled, it cannot be used as clinical evidence to tell how effective Abilify is in M.E. However, the results were promising and could provide the basis for a more rigorous trial as 75% of patients reported they experienced :
- - less fatigue
- - less brain fog
- - improved PEM
- - improved sleep
- 💙 Abilify is the drug that allowed Whitney Dafoe,
one of the most well known and severely affected M.E. patients, to communicate for
the first time in years.
What my doctor told me?
It was suggested to me that I take 0.1ml every day and more up by 0.1ml every 5 - 7 days. The maximum dose I could take is 2ml. However, lots of patients foundnd their sweet spot before hitting 2 ml, so to stick at the dose that works best for me, everyone is different. He found that in his patients that had trialed it two thirds had seen improvements and out of that half of that figure had made significant improvements (so 33.3% of patients had gone on to have huge changes in their quality of lives and activity levels). One third of his patients had made no noticeable improvements but no-one had found it made their M.E. worse.
How I am trialing it?
I suffered some side effects for about 5 - 8 days every time I moved up
the dose by 0.1ml. This was initial advice from my consultant. The aim is to build up to a maximum dose of 2ml, but there is a possibility that my ideal dose, or sweet spot, is lower. However, although the side effects were manageable and faded after several days, they were very disruptive and not that fun, so I decided to try moving up by just 0.05ml a time the side
effects became much reduced and easier to live with.
I tend to move the dose up approximately every 10 - 20 days depending on my reaction
and how I feel generally with my health and what else is going on. By day 70 (ish) I realised it as much better to move up much slower. So decided to go to a schedule of at least 20 days depending on how I felt.
At the time of writing this I am at day 100 and have been on 0.9ml for 11 days. Last night I still had some small side effects so I am going to wait many more days before moving up to 1ml! Sometimes the side effects come and go with a day or two in between, so if this happens I find it best to keep on each dosage nearer the 20 day mark just to make sure my body has adjusted.
As this is a fairly new way to try and treat M.E./CFS I was nervous about trying this without having access to other patient stories or clinical trials. However after quite a lot of internet searching I found a great group I found on Facebook called Abilify for ME/CFS that is full of stories and advice. The biggest takeaway from the group I learned was that do everything slowly and that moving the dose up every 15-20 days rather than 7-10 days was what most people found beneficial too. I really wish I had found the forum to read thoroughly before starting on Abilify. I urge anyone to do the same as it is really helpful in helping you find the right treatment plan. These are the tips I found on the group that I wish I had read before starting:
Side Effects
🌀 Bad/weird dreams
🌀 Heightened anxiety
🌀 Headaches
🌀 Heightened adrenaline making me feel jittery and overly-energised
🌀 Stomach ache
🌀 A small weight gain (but monitoring that, it seems to be a big problem on the Facebook group for people)
These side effects were worse at the beginning when I was increasing by 0.1ml at a time. However, when I switched to 0.05ml increases they were much reduced and much more manageable.
Benefits
I can confirm that it is making a difference. I have definitely felt some positive improvements which I have listed below:
🔹Graduated improvement in general energy
🔹Almost immediate improvement with my brain fog, concentration and mental clarity
🔹Improved sound sensitivity (found I can listen to music much more easily)
🔹Improved
delayed PEM. I have found that after big activities, such as
appointments, the worst PEM is kicking in on day 2 rather than my usual
day 3 and the PEM is not quite as bad as it used to be. In other words
day 2 is my worst day and my body starts to level out and recover on
days 3 and 4. This has not happened for the majority of my illness.
🔹General feeling a bit more “weller“. I feel a difference in my body, it feels different at almost a cellular level (if its possible to feel that!)
🔹Small improvement in sleep quality
🔹A lot of basic things I do in my day, like brushing my teeth, are just a little bit easier! In fact, I usually cannot brush my teeth more than once a day but recently I have been brushing them twice several days a weekMy Top Tips
- 🔵 Join the Abilify for ME/CFS Facebook group. They are very friendly and there is lots of helpful information available.
- 🔵 Shop around for the best priced Abilify. I found that the group advised to send my private prescription to Dickson Chemist as it is much cheaper, in the region of £30 for some people, where as my local chemist was £150! I will be sending my next prescription to Dickson Chemist!
- 🔵 Keep a diary or symptoms and change. It is easier to track and work out the correct dose and time frame best suited to you before you modify your dosage.
- 🔵 Leave at least 20 days between dose changes and move up by 0.05ml at a time!
