Pramipexole put my CFS/ME into remission

[Webby04]

Hi all,
I’ve had ME/Cfs for 3 years now. Brought on my leaky gut/viral ilness.
my bell score is around 30 without any medication.
I used low dose Abilify for 6 weeks it put my CFS into bell 90. But that stopped working.
I went back to bell 30 after that nothing helped.
I tried vraylar, rexulti and both worked really well for a month each until they also stopped working as well. Maybe bell 80 or there abouts.

I’ve just been using pramipexole for the past 6 weeks and it has actually put my CFS into full remission. I know it won’t last as all meds stop working due to tolerance. But clearly for me this is a dopamine issue.. I’m just posting it here for people to be aware and that this is my experience.. as I said it will be temporary due to tolerance building up. But thought I would share my story for those willing to try it. It obviously comes with risks but I’m just willing to try anything to increase my QOL. Happy to answer any questions. I take slow release over 12 hours 0.75mg pramipexole.. lower dose and instant release did nothing for me.

 

[hapl808]

I definitely think mine is dopamine related. I haven't tried LDA - considering it, but concerned about long term effects of some of those types of medications.

How did you end up getting pramipexole? And what kind of risks did you consider?

 

[DonPepe]

Hi all,
I’ve had ME/Cfs for 3 years now. Brought on my leaky gut/viral ilness.
my bell score is around 30 without any medication.
I used low dose Abilify for 6 weeks it put my CFS into bell 90. But that stopped working.
I went back to bell 30 after that nothing helped.
I tried vraylar, rexulti and both worked really well for a month each until they also stopped working as well. Maybe bell 80 or there abouts.

I’ve just been using pramipexole for the past 6 weeks and it has actually put my CFS into full remission. I know it won’t last as all meds stop working due to tolerance. But clearly for me this is a dopamine issue.. I’m just posting it here for people to be aware and that this is my experience.. as I said it will be temporary due to tolerance building up. But thought I would share my story for those willing to try it. It obviously comes with risks but I’m just willing to try anything to increase my QOL. Happy to answer any questions. I take slow release over 12 hours 0.75mg pramipexole.. lower dose and instant release did nothing for me.

I also found benefit from Pramipexole. I took it before my first try of Abilify and it moved me from permanently bed ridden to being able to potter around my home. It never worked again once the effects wore off after about 6 weeks.

I’m back on Abilify now but in a combo with Amisulpride. 1.5 mg Abilify + 20 mg Amisulpride, and it seems to be working. I’m also taking Mestinon.

But yeah, something to do with dopamine seems to be my problem also.

 

[DonPepe]

I have some Zonegran which is an anti-epileptic. It also regulates / stabilises dopamine production at low doses. I haven’t tried it yet because I’m in the middle of experimenting with Abilify Amisulpride and Mestinon.

The possible side effects from Zonegran make me weary of taking it and I’ve never heard of anyone else with ME taking it so I don’t have any anecdotal evidence to go on.

 

[DonPepe]

Incidently, I also tried Abilify Pramipexole combo as the positive effects I was getting from Pramipexole started to wear off. It never helped.

But like others seem to be able to come off Abilify once tolerance builds and then return to it about 4 months later. And once again I start getting benefit. I’d say 4 or 5 months off and I can return to it.

 

[Webby04]

I also found benefit from Pramipexole. I took it before my first try of Abilify and it moved me from permanently bed ridden to being able to potter around my home. It never worked again once the effects wore off after about 6 weeks.

I’m back on Abilify now but in a combo with Amisulpride. 1.5 mg Abilify + 20 mg Amisulpride, and it seems to be working. I’m also taking Mestinon.

But yeah, something to do with dopamine seems to be my problem also.

Yeah I’m absolutely waiting for pramipexole to stop working. I just don’t know what to do once it does. What dose of it were you and was it slow release?

 

[DonPepe]

Zonisamide (Zonegran) appears to have several effects on dopamine regulation that may contribute to its potential use in Parkinson's disease:

1. Increased dopamine synthesis: Zonisamide has been shown to increase dopamine synthesis by enhancing tyrosine hydroxylase activity in the striatum[1][2]. This could help compensate for the dopamine deficiency in Parkinson's.

2. Enhanced dopamine release: Studies have demonstrated that zonisamide can increase the exocytosis of dopamine, though this effect appears to be dose-dependent[2].

3. MAO-B inhibition: Zonisamide acts as a reversible inhibitor of monoamine oxidase B (MAO-B), which is involved in dopamine breakdown. This inhibition may help preserve dopamine levels[2].

4. Neuroprotective effects: While the mechanism is not fully clear, zonisamide's neuroprotective properties may help slow dopamine neuron loss in Parkinson's disease[2].

Anecdotal evidence from clinical studies supports zonisamide's potential in Parkinson's treatment:

- A study in Japan showed improvements in motor symptoms when zonisamide was added to levodopa therapy[2].

- A small study in Spain found that zonisamide helped reduce impulse control disorders in Parkinson's patients taking dopaminergic medications[2].

- Zonisamide appeared to be well-tolerated in these studies, with relatively few side effects reported[2].

While these results are promising, larger controlled trials are needed to fully establish zonisamide's efficacy and safety profile for Parkinson's disease treatment.

Sources
[1] Effects of zonisamide on dopaminergic system - ScienceDirect.com https://www.sciencedirect.com/science/article/pii/092012119500078X
[2] Zonisamide: A review of the clinical and experimental evidence for ... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3847242/
[3] A R T I C L E S http://behavioralhealth2000.com/wp-...es-tonic-and-phasic-dopamine-transmission.pdf
[4] Side and region dependent changes in dopamine activation with various durations of restraint stress - PubMed https://pubmed.ncbi.nlm.nih.gov/1884238/
[5] Dopamine: How to Regulate It Naturally (& Why It’s Linked to Pleasure) https://www.scienceofpeople.com/dopamine/

 

[DonPepe]

Most of these trials used the changes in the Unified Parkinson's Disease Rating Scale (UPDRS) score as the endpoints and the most conclusive evidence is for a dose of 25-50 mg, which caused a change in UPDRS part III (motor symptoms). These patients were on levodopa and other drugs used for PD during the trials. One of the clinical trials conducted in Spain investigates the use of zonisamide in impulse control disorders among 15 patients of PD. Among the many mechanisms postulated, a reduction in levodopa induced quinone formation, protection against mitochondrial impairment and an increase in astroglial cysteine transport, an inhibition of microglial activation, monoamine oxidase-B (MAO-B) inhibition, an increased dopamine release and blockade of calcium channels are the most cited. There is evidence for use of zonisamide in PD in addition to levodopa and other therapies for control of motor symptoms. For now, the evidence for its use in control of non motor symptoms in PD is not enough and needs to be investigated further.

 

[DonPepe]

It’s interesting that the dosage of zonegran for epilepsy is between 100 and 600mg. And it seems that zonegran is most effective at a fraction of this dose. In the Spanish study between 25 and 50mg was used.

 

[DonPepe]

I was taking 0.25mg of pramipexole. Don’t know if time release.

 

[Hip]

I’ve just been using pramipexole for the past 6 weeks and it has actually put my CFS into full remission. I know it won’t last as all meds stop working due to tolerance. But clearly for me this is a dopamine issue.

Thanks for posting you story, Webby04.

Were you still taking low-dose Abilify when you started on pramipexole? Or did you stop the Abilify, and then switch to pramipexole.

 

[hmnr asg]

Thanks for posting you story, Webby04.

Were you still taking low-dose Abilify when you started on pramipexole? Or did you stop the Abilify, and then switch to pramipexole.

I am also curious about this. Is this a synergistic effect of two medications or just pramipexole?
ps what other medications are you taking?

 

[Webby04]

Yes I was but I had fully returned to bell 30 (prestate abilify)

 

[junkcrap50]

Since all the other drugs you tried stopped working, likely due to tolerance, have you considered cycling pramipexole, where you spend some amount of time off the medication after having taking it for a bit?

For example, 2 weeks on, 1 week off? Or something along those lines, depending on how long it takes the benefits to fade when being off. I know it is not ideal as the time off you might likely decline, but it might give you an overall higher baseline if

How long did it take on LDA & others when you notice it's not helping as much to completely not working & back to baseline?

 

[Hip]

Yes I was but I had fully returned to bell 30 (prestate abilify)

So you are saying @Webby04 that pramipexole does not work on its own, but works in conjunction with low-dose Abilify?

Are you saying that extended release pramipexole 0.75 mg daily, when added to daily Abilify, seems to fix the "poop out" that many patients experience with Abilify (where Abilify stops working after some weeks or months).



@leokitten may be interested, as he has been trying to figure out how to fix the loss of effect of Abilify.

 

[Webby04]

So you are saying @Webby04 that pramipexole does not work on its own, but works in conjunction with low-dose Abilify?

Are you saying that extended release pramipexole 0.75 mg daily, when added to daily Abilify, seems to fix the "poop out" that many patients experience with Abilify (where Abilify stops working after some weeks or months).



@leokitten may be interested, as he has been trying to figure out how to fix the loss of effect of Abilify.

I’m going to try taking pramipexole without Abilify. I believe pramipexole just works like Abilify, I don’t think it fixes the poop out effect.. I believe it will still work without Abilify. I will report back

 

[hapl808]

So you are saying @Webby04 that pramipexole does not work on its own, but works in conjunction with low-dose Abilify?

Are you saying that extended release pramipexole 0.75 mg daily, when added to daily Abilify, seems to fix the "poop out" that many patients experience with Abilify (where Abilify stops working after some weeks or months).

Interesting question. Did pramipexole work on its own, or did it allow the LDA to start working again?

I’m going to try taking pramipexole without Abilify. I believe pramipexole just works like Abilify, I don’t think it fixes the poop out effect.. I believe it will still work without Abilify. I will report back

Thanks for the detail - looking forward to hearing.

I'm at a Bell around 15 I'd say. Were you at 30 for the three years before trying LDA?

 

[Webby04]

Since all the other drugs you tried stopped working, likely due to tolerance, have you considered cycling pramipexole, where you spend some amount of time off the medication after having taking it for a bit?

For example, 2 weeks on, 1 week off? Or something along those lines, depending on how long it takes the benefits to fade when being off. I know it is not ideal as the time off you might likely decline, but it might give you an overall higher baseline if

How long did it take on LDA & others when you notice it's not helping as much to completely not working & back to baseline?

That’s a great idea. I just assumed tolerance would build up regardless..
I’m not sure what you mean by your question sorry mate?

 

[Webby04]

Interesting question. Did pramipexole work on its own, or did it allow the LDA to start working again?



Thanks for the detail - looking forward to hearing.

I'm at a Bell around 15 I'd say. Were you at 30 for the three years before trying LDA?

Yes I was. It slowly declined over the years though. As I kept pushing and crashing!

 

[hapl808]

Yes I was. It slowly declined over the years though. As I kept pushing and crashing!

Mine was the same - a slow decline, likely caused by my unwillingness to stop pushing myself.

On the Bell scale, started around 60 maybe 25 years ago (triggered by virus or vaccine - I'm not sure which). By ten years ago it was down to 30 which was miserable enough. Then a bad extended allergic reaction dropped me down to 15, and been there for over five years. The constant headache / head pressure, cognitive crashes, etc - that's the worst.