Abilify- Stanford Clinic Patients

Martin aka paused||M.E.

Martin aka paused||M.E.

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jaybee00 said:
@Janet Dafoe

Is it possible for you to update us on the OMF Abilify study?

Also it is important to investigate the mechanism for poop out (tachyphlaxis) in this drug, and how to overcome it. Typically Abilify works for about 3-4 months and then it stops working.

Thank you!
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I worked out that it’s pharmacokinetic tolerance and not tachyphylaxis. Tachyphylaxis is when a drug stops working initially, after the first or second dose and is easily to treat with drug holiday. pharmacokinetic tolerance is very complex, occurs Afters months or years and can potentially be life long. That’s what I read in many Google articles. There is no one that sums it all up. I dunno why.
It would be very important to ask Bonilla because he must know this happens in many, if not most patients.
 
leokitten

leokitten

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Martin aka paused||M.E. said:
I worked out that it’s pharmacokinetic tolerance and not tachyphylaxis. Tachyphylaxis is when a drug stops working initially, after the first or second dose and is easily to treat with drug holiday. pharmacokinetic tolerance is very complex, occurs Afters months or years and can potentially be life long. That’s what I read in many Google articles. There is no one that sums it all up. I dunno why.
It would be very important to ask Bonilla because he must know this happens in many, if not most patients.
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Hey @Martin aka paused||M.E. I must’ve missed your update! This is very good news, so in your body after a drug taper and full washout of 1-2 months it works again like when you first took it?

EDIT: sorry brain fart, you were talking about the appropriate phenomenon and terminology. Ignore my update question.
 
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hmnr asg

hmnr asg

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Martin aka paused||M.E. said:
I worked out that it’s pharmacokinetic tolerance and not tachyphylaxis. Tachyphylaxis is when a drug stops working initially, after the first or second dose and is easily to treat with drug holiday. pharmacokinetic tolerance is very complex, occurs Afters months or years and can potentially be life long. That’s what I read in many Google articles. There is no one that sums it all up. I dunno why.
It would be very important to ask Bonilla because he must know this happens in many, if not most patients.
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Hi Martin,
How have you been doing? I figure the paramipexole trial was a failure? when will you restart the abilify? (and what dose are you planning on taking?)

I am going to wait a month and restart abilify at 0.5 mg. I have an appointment with the CFS clinic at Stanford to see what dose I should be doing but its out in march and I dont want to wait that long. Will get the solution version of abilify from my GP and start at 0.5 mg in two weeks or so.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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2,291
hmnr asg said:
Hi Martin,
How have you been doing? I figure the paramipexole trial was a failure? when will you restart the abilify? (and what dose are you planning on taking?)

I am going to wait a month and restart abilify at 0.5 mg. I have an appointment with the CFS clinic at Stanford to see what dose I should be doing but its out in march and I dont want to wait that long. Will get the solution version of abilify from my GP and start at 0.5 mg in two weeks or so.
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I’m doing quite ok so Abilify had a lasting effect on me!
I will start in three days again with 0.5 mg.
 
hmnr asg

hmnr asg

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571
Martin aka paused||M.E. said:
I’m doing quite ok so Abilify had a lasting effect on me!
I will start in three days again with 0.5 mg.
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Unlike Martin I have been a mess since I stopped taking abilify: sleeping much more, even worse than my baseline in terms of energy and brain fog, irritability and low mood.

For reference: i was taking 1mg for 1 month and then went up to 2mg of abilify and then stopped when i felt like the benefits were starting to dwindle and thought about taking an abilify holiday. ( I also take cymbalta).

Also, not sure why the CFS clinic is using such low doses, it doesnt seem to be benefiting people. I will be sure to ask them after my appointment in March.
 
junkcrap50

junkcrap50

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Badpack said:
Following Whitney Dafoe, they have improved Abilify drugs in the pipeline. Would be nice to know about what they are thinking. Because i have a bad feeling that it probably was tested by somebody already anyway and didnt work better.
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Well what did Whitney mean exactly? That they figured out how Abilify works in CFS patients? And there may be a better mousetrap/way to do it than Abilify? Or that they discovered why Abilify works and understand more of what's wrong in CFS?
 
hmnr asg

hmnr asg

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571
mitoMAN said:
Would be interesting to start an Abilify Poll. To see how many patients benefitted, and how many KEPT the benefits for more than a few months. Right now I have the impression that barely anyone besides Whitney has extended use for Abilify.
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I think most people got at least a few months out of abilify. And more than just minor improvements. This is something that we have rarely had in our community: Something that can help this long at this level for so many people. So i think your impression is very different from mine (and i did try abilify with great success initially).

I think a poll is a good idea, but surprisingly few people have tried abilify given its effectiveness in the people who tried it. And now the CFS clinic at stanford is telling people to try doses in the range of 0.1mg to 0.2mg which doesnt seen to be working. So we might not get enough useful data points with a poll.

I'm just hoping for this "big news" from Ron Davis to give us some clue as to what we should do with abilify.
 
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