Monday, 27 June 2022

Abilify and M.E. Part One: The Beginning


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?

  • ๐Ÿ’™ Abilify is the trade name for Aripiprazole is usually used as an antipsychotic drug and sometimes used to treat irritability linked with autism.
  • ๐Ÿ’™ Abilify affects the levels of dopamine and serotonin transmitters in the brain and nervous system.
  • ๐Ÿ’™ 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.
  • ๐Ÿ’™ 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 
  • ๐Ÿ’™ 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:

๐Ÿ”ต Do NOT rush it
๐Ÿ”ต Increase the dose slowly 
๐Ÿ”ต Increase the amount in very small increments
๐Ÿ”ต Keep baseline activity at usual levels for about 3 months
๐Ÿ”ต If you need to take it every other day, or every few days, because you struggle with the side effects that is perfectly fine, it has a long half life

The overall experience from the group suggested how incredibly important it was to heed this advice even if I felt better before this time. That is the advice because people who have felt an increase in energy before 3 months have pushed it too far and have ended up crashing. These people have had to start building their dosages up slowly all over again. Dr Bonilla from Stanford University has advised his patients that the people that get the best outcome are those who keep their baseline activity the same for at least 3 months when starting the Abilify. I stuck to this advice.

Side Effects

๐ŸŒ€ Agitation
๐ŸŒ€ Bad/weird dreams 
๐ŸŒ€ Extra sleepy
๐ŸŒ€ Heightened anxiety
๐ŸŒ€ Headaches
๐ŸŒ€ Heightened adrenaline making me feel jittery and overly-energised
๐ŸŒ€ Stomach ache
๐ŸŒ€ Nausea
๐ŸŒ€ 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:

๐Ÿ”นGraduated improvement in general energy

๐Ÿ”นAlmost immediate improvement with my brain fog, concentration and mental clarity

๐Ÿ”นImproved sound sensitivity (found I can listen to music much more easily)

 ๐Ÿ”นImproved 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.

๐Ÿ”นGeneral 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!)

 ๐Ÿ”นSmall improvement in sleep quality

๐Ÿ”นA 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 week

My Top Tips 

  1. ๐Ÿ”ต Join the Abilify for ME/CFS Facebook group. They are very friendly and there is lots of helpful information available.
  2. ๐Ÿ”ต 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!
  3. ๐Ÿ”ต 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.
  4. ๐Ÿ”ต Leave at least 20 days between dose changes and move up by 0.05ml at a time!


Friday, 10 June 2022

A Note Of Hope

A Note of Hope was created from a community of wonderful women who are chronically ill. Ellie, got us all together and for the past couple of years we have been supporting each other. Now, Ellie has created an Instagram account @a.note.of.hope as a supportive place for people with chronic illnesses to connect with each other through hope, shared experiences and to develop friendships.

I volunteered my story to be added to the Instagram account in its first month. If you would like to read my story and how it relates to hope please check it out here. There are multiple other stories on the page too and more will be added in the following months. If you would like to share your story please DM @a.note.of.hope and if you would like some support and hope in your life please give the account a follow. It will bring you great joy. Ellie is working hard to make it a hopeful place with all sorts of content. More projects are underway and the first has already launched which is a monthly book club run by Jess which you can join by simply asking to be added to the book group chat on Instagram. 

Ellie is incredibly passionate and motivated by this project and developing community and I think her words below sum up what A Note Of Hope is all about

"It is my hope for this project to become a safe space for people who are in the position I was 7 years ago…focusing on building friendships and promoting positivity when possible. I want to share stories that show not only peoples struggles but their passions, hobbies, interests…everything that keeps them going through the hard times, with the goal to inspire and give others hope. We are so much more than just our health." (Ellie, 2022)




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