Abilify- Stanford Clinic Patients

[bread.]

That's typical. And you're welcome.

Not sure what you mean.

You have to understand the following:

I am a Stanford patient who is very severe, they treat patients with Abilify for 2 years now.

You are the only patient who went from very severe to moderate according to what I know from all the forums available and what doctors were able to tell me.

So far most people (by far) report slight improvements that get less after a few months. Some get quite substantially better, but not from very severe to moderate (maybe there are more, outside stanford clinic patients), by definition that makes your case special at this point in time - it is not the norm. And yes, some got actually worse on Abilify. So all this should be known so people can make their choices with all the data at hand.

 

[YippeeKi YOW !!]

For what it's worth I would put it down to them not having me/cfs.

Isn't that a little like saying " ... the patient died in spite of chemo, obviously, the patient didnt have cancer ...."

 

[YippeeKi YOW !!]

Now you can verbally kill me, I won't read it

Absolutely no verbal marauding here. Your points are valid for you, maybe not for all of us, and I totally agree; if a member is as serious as you were, and I dont think there are too many steps below yours in terms of seriousness, then the risks of Abilify are vastly outweighed by the potential rewards ...

And the rewards for you have been PHENOMENAL !!! I'm soooooooooooo happy for you, @Martin aka paused||M.E. ..... this result is as close to miraculous as anyone could hope for !!!

Keep on keepin' on, and keep on keeping us posted ...... !!!!

 

[Martin aka paused||M.E.]

Not sure what you mean.

You have to understand the following:

I am a Stanford patient who is very severe, they treat patients with Abilify for 2 years now.

You are the only patient who went from very severe to moderate according to what I know from all the forums available and what doctors were able to tell me.

So far most people (by far) report slight improvements that get less after a few months. Some get quite substantially better, but not from very severe to moderate (maybe there are more, outside stanford clinic patients), by definition that makes your case special at this point in time - it is not the norm. And yes, some got actually worse on Abilify. So all this should be known so people can make their choices with all the data at hand.

That is exactly why I said I would not try it if I was mild or moderate because it’s a potentially dangerous drug. And through Instagram I talked with a few more ppl who got from severe to moderate or mild so I’m not that special. But I’m very grateful and I know that I’m lucky

 

[YippeeKi YOW !!]

We know that different types of cancer, different types of the same immune disease and so on need different treatments. Why should it be different in ME/CFS?

Clearly, the wildly divergent manifestations of this crappy little sucking quicksand pit of an illness indicate that that's indeed the case. It's also why it's so difficult, possibly impossible, to find a one-size-fits-all cure that would work across the board ...

 

[YippeeKi YOW !!]

Your conclusion that the more severe you are the more prone to try one is seems a bit off as this group is already in great jeopardy.

I think that the conclusion that the sicker you are with ME, the closer you may be to either death or a permanent vegetative state, is what justifies the risk of various treatments, at least to those who re confronting those two alternatives.

And I also agree that it's important to be aware of the negatives of Abilify, since without open exchanges about those, as well as the potential benefits, it's difficult to balance the risk/reward ratio ...

 

[choochoo]

Not sure what you mean.

You have to understand the following:

I am a Stanford patient who is very severe, they treat patients with Abilify for 2 years now.

You are the only patient who went from very severe to moderate according to what I know from all the forums available and what doctors were able to tell me.

So far most people (by far) report slight improvements that get less after a few months. Some get quite substantially better, but not from very severe to moderate (maybe there are more, outside stanford clinic patients), by definition that makes your case special at this point in time - it is not the norm. And yes, some got actually worse on Abilify. So all this should be known so people can make their choices with all the data at hand.

What?

I wouldn't call walking a few steps from a wheelchair moderate! You seem to be sceptical of what Martin says for some reason. Just take it at 'face value' and not with a pinch of salt.

 

[Martin aka paused||M.E.]

What?

I wouldn't call walking a few steps from a wheelchair moderate! You seem to be sceptical of what Martin says for some reason. Just take it at 'face value' and not with a pinch of salt.

I can’t walk to far because of muscle atrophy... it’s getting better every week!

 

[choochoo]

I can’t walk to far because of muscle atrophy... it’s getting better every week!

Fabulous

 

[fablepd]

Hi All:

Lately have ready numerous posts on Facebook (Stanford/ME group) about the use of Abilify. Apparently the clinic is prescribing very low dose of Abilify as part of their treatment protocol. Does anyone have any experience using this drug. If so can you discuss the results you had using the drug. Did it help you. Did it alleviate any symptoms. Did it have any negative side effects. Any insight/info appreciated.

Thanks.

Unfortunately other user cannot join the Stanford ME Group. Any other info about the protocol please ?

 

[choochoo]

Unfortunately other user cannot join the Stanford ME Group. Any other info about the protocol please ?

Difficult message to understand. Please elaborate?

 

[Pendergast]

- I'm back on tinder :-D

 

[fablepd]

Difficult message to understand. Please elaborate?

I mean, the Facebook group seems not to allow any new user.

 

[choochoo]

I think you have to apply first. Not sure because I dont use it. Maybe I should.

 

[choochoo]

I think you have to apply first. Not sure because I dont use it. Maybe I should.

Are you still taking the provigil?

 

[leokitten]

I’m going up to 5 mg/day as the lower dose of 2 mg seems to be losing efficacy. Dosage for schizophrenia is 10-15 mg.

Tell us if you are getting any increased side effects. I think 5 mg is the standard dosage for add-on to antidepressants.

 

[leokitten]

I’m going up to 5 mg/day as the lower dose of 2 mg seems to be losing efficacy. Dosage for schizophrenia is 10-15 mg.

@jaybee00 why don't you combine a lower Abilify dose with celecoxib, etoricoxib, or LDN for the reported supposed synergistic and tolerance preventing effect?

 

[choochoo]

I’m going up to 5 mg/day as the lower dose of 2 mg seems to be losing efficacy. Dosage for schizophrenia is 10-15 mg.

Why are you considering going straight from 2mg to 5mg? That's a big increase

 

[jaybee00]

Yes it’s a big increase... I’m not a great fan of LDN. No more side effects on 5 mg. Sleep is bad... but it is also bad without Abilify. By bad I mean waking up around 3 am and then staying awake for an hour or two.

 

[Jessie 107]

Yes it’s a big increase... I’m not a great fan of LDN. No more side effects on 5 mg. Sleep is bad... but it is also bad without Abilify. By bad I mean waking up around 3 am and then staying awake for an hour or two.

The sleep disturbance is what puts me off going up a dose with abilify I am taking 2.5 mg and my sleep now has settled down