Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Any other sexual dysfunctions not properly addressed by medical science.
mtkhalid
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Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by mtkhalid »

I experienced enduring sexual dysfunction (loss of libido, genital anesthesia, ejaculatory anhedonia, erectyle dysfunction) thanks to Abilify 15 mg.

Abilify is an antipsychotic, not an SSRI drug, so would this still be considered PSSD (considering that PSSD by nature occurs due to SSRI drugs)?

I know the symptoms that I have mirror those of PSSD, though.

I would also like to add that, years after discontinuing the drug, nothing ever returned, hence, enduring sexual dysfunction.

How common is enduring sexual dysfunction thanks to Abilify and other antipsychotics? When I contacted the Abilify manufacturer, they said the sexual dysfunction side effects shouldn't be permanent; i.e. they should reverse after discontinuing the drug. I'm not sure if they had even heard of such a case before; ie enduring and permanent sexual dysfunction thanks to Abilify.

Is mine a rare case then? i.e. is it rare to have permanent sexual dysfunction thanks to Abilify?

I'd appreciate any insight.
OCDemon
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by OCDemon »

Rexulti (Abilify on Steroids, same company) gave me severe premature ejaculation, soft glans while erect, unsatisfying orgasm, and going flaccid immediately upon starting ejaculation. I used to stay hard after ejaculating for quite a while, sometimes to the point of not losing my erection at all, but now after ejaculating, within a couple seconds I am soft and also feel like I've been injected with a numbing agent.

My emotions in regards to sex and relationships have also been severely blunted. Passion, jealousy, lust, all seem to be gone. It's hard to tell whether this is neurological damage, or the psychological trauma of getting sexual dysfunction from this medication. I would seriously equate it with PTSD. Having your sexuality neurologically damaged/taken away is extremely traumatic and I find it impossible to separate feelings of lust/romance/whatever from this deep emotional and psychological trauma. So if my emotions have not been blunted directly by the medication they have certainly been blunted by the psychological trauma of the damage it has caused.

Heart goes out to you. We all need to bridge the gap between SSRI and antipsychotic damage. Different poisons, same effects, and we're all suffering the same. Unfortunately PSSD specifically is named after SSRI's, but that's likely before people were aware that other psychiatric drugs can cause the same issues.
arahant
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by arahant »

mtkhalid wrote: Wed Dec 23, 2020 7:13 pm I experienced enduring sexual dysfunction (loss of libido, genital anesthesia, ejaculatory anhedonia, erectyle dysfunction) thanks to Abilify 15 mg.

Abilify is an antipsychotic, not an SSRI drug, so would this still be considered PSSD (considering that PSSD by nature occurs due to SSRI drugs)?

I know the symptoms that I have mirror those of PSSD, though.

I would also like to add that, years after discontinuing the drug, nothing ever returned, hence, enduring sexual dysfunction.

How common is enduring sexual dysfunction thanks to Abilify and other antipsychotics? When I contacted the Abilify manufacturer, they said the sexual dysfunction side effects shouldn't be permanent; i.e. they should reverse after discontinuing the drug. I'm not sure if they had even heard of such a case before; ie enduring and permanent sexual dysfunction thanks to Abilify.

Is mine a rare case then? i.e. is it rare to have permanent sexual dysfunction thanks to Abilify?

I'd appreciate any insight.
It depends on what you are taking as "baseline".

For example:

Abilify in high doses is sometimes used to take people out of manic-psychotic outbreaks which are mostly described as euphoric and hypersexual.
If someone takes it and gets out of a manic state, any "sexual functioning" outside that might be seen as "sexual dysfunction" if they always compare a "current" to a manic sexual function.
On the flip side, there's even a lawsuit in the USA of people claiming Abilify made them hypersexual.
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Area1255_2021
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by Area1255_2021 »

Abilify shouldn't cause these issues though, because it is an Alpha-1-blocker [1], but it does have lots of Serotonin-activities [2]. So I guess (hypothetically) it could cause PSSD.
OCDemon
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by OCDemon »

Area1255_2021 wrote: Thu Nov 11, 2021 2:58 pm Abilify shouldn't cause these issues though, because it is an Alpha-1-blocker [1], but it does have lots of Serotonin-activities [2]. So I guess (hypothetically) it could cause PSSD.
https://www.accessdata.fda.gov/drugsatf ... 007lbl.pdf

In this document, abnormal ejaculation and anorgasmia are listed as potential side effects, on page 33 of 39. My experience with Rexulti corroborates this. I think it's important Abilify and Rexulti are brought to people's attention as potentially causing severe and permanent sexual dysfunction, as this is certainly what happened to me.

The mechanisms can be hard to explain too, such as for me, loss of erection upon beginning ejaculation, to the point of completing ejaculation while flaccid. I would include that under "abnormal ejaculation," but the description is so vague. It is important for people to know however that Abilify is officially listed to potentially cause sexual dysfunction, though this isn't common knowledge. All you hear now is that it may cause sexual compulsions, which are said to stop after discontinuing the medication. I've been off Rexulti for two years and the neurological damage it caused appears to be permanent.
6-Eggs!
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by 6-Eggs! »

I had the same with Rexulti, sexual function was fine and good for the first 18 months then after that point I got delayed onset (tardive) of side effects including sexual dysfunction (no erections(were ok when able to get aroused rarely), inability to translate sexual dire into arousal) I stopped taking it 12 months after that once the docs identified Rexulti as the cause and while libido skyrocketed I got severe FND and PSSD like symptoms that landed me in hospital 4 times over Xmas.

I had withdrawal induced extreme anxiety 3 months after stopping and only restarting the Rexulti at a low dose was able to control it and attempt a very slow taper again.

It's been 3 months to date since restarting at 0.25mg and almost all of my FND and PSSD like symptoms have subsided (Still get flaccid glans but have some mental control over it now) but I do still get waves of slight relaps but I would say the those 2 syndromes have mostly healed but the catch is while my glans started to improve and 70% get back to normal and got 90-95% of my genital sensation back as well as feet, hands and face sensation back the original Rexulti delayed side effects have come back (low libido, no erections, anxiety, blunt emotions, bad restless legs and noctial itching).

I am hopeful that I will completely recover but it will take many months and even a year or 2 due to the super slow taper that APs require not to end you in hospital. My next dose reduction is due in early May (2022) and plan to go to 0.125mg for another 4 months before halving 1 or 2 more times before stopping.

My prediction is my libido will increase again but I might get a relapse or partial relapse of the FND and some of the physical PSSD symptoms (flaccid glans and numb glans)


I might add while I tried probably 15 or 20 different ssri/snri back when I first got depression and chronic fatigue in 2014 I never got PSSD from any of them. I was on Moclobemide from 2015 to current but the Rexulti was added due to Moclobemide partial effectiveness in early 2019 and but late 2020 I got all the side effects including sexual problems which I was ok when I was on Moclobemide the whole time and even improvement from the original sexual dysfunction caused by the depression in the first place.

My hypothesis is while people who do not get PSSD from SSRIs (but might otherwise be intolerant of them like I was) can be effected by newer APs due to their multi neurotransmitter and receptor targets with often different actions for each of the targets just messes up the entire brain's neural network and the PSSD symptoms are likely a small part of a much wider functional problem, hence FND emerging for some people like me upon discontinuation.

The good news is that it often can and does return back to baseline but can take a few years, the longer a person is on an AP the longer the neuro adaptation takes to return to baseline and that is true for all APs. I was on them for a total of 2.5 years not including the reintroduction from Jan this year at the micro dose. My FND symptoms have improved greatly in the last 2 months and often improves in waves and sudden step like fashion. Sometimes you get a relapse after a long steady period of no improvement and then few days later it suddenly improves again but several steps forward and then the next lot of improvement might happen the same way.

My glans numbness improved like that way. 3 months of no improvement after a sudden sensitivity improvement from 0-10% feeling it was at about 50% sensation. Then it stayed like that for 2 months and then out of the blue it went to 10% again and up and down to 70% over a few days, then to 5% the following week and then over night went to 95% and had hovered from 85% to 95% since.

AP withdrawal is painful and extremely slow for nearly everyone taking them, unlike regular antidepressants for most people which recover after 6-12 week. Issues thought permanent like tardive dyskinesia actually do recover but they take 2-5 years of being drug free some new studies show, they are thought to have always been permanent as most patients aren't followed up long term over many years in older studies.

I am keeping regular updates in the general thread regarding my journey coming off Rexulti and Mocloemide (although Moc has caused me 0 issues).
OCDemon
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by OCDemon »

6-Eggs! wrote: Sat Apr 16, 2022 1:26 am I had the same with Rexulti, sexual function was fine and good for the first 18 months then after that point I got delayed onset (tardive) of side effects including sexual dysfunction (no erections(were ok when able to get aroused rarely), inability to translate sexual dire into arousal) I stopped taking it 12 months after that once the docs identified Rexulti as the cause and while libido skyrocketed I got severe FND and PSSD like symptoms that landed me in hospital 4 times over Xmas.

I had withdrawal induced extreme anxiety 3 months after stopping and only restarting the Rexulti at a low dose was able to control it and attempt a very slow taper again.

It's been 3 months to date since restarting at 0.25mg and almost all of my FND and PSSD like symptoms have subsided (Still get flaccid glans but have some mental control over it now) but I do still get waves of slight relaps but I would say the those 2 syndromes have mostly healed but the catch is while my glans started to improve and 70% get back to normal and got 90-95% of my genital sensation back as well as feet, hands and face sensation back the original Rexulti delayed side effects have come back (low libido, no erections, anxiety, blunt emotions, bad restless legs and noctial itching).

I am hopeful that I will completely recover but it will take many months and even a year or 2 due to the super slow taper that APs require not to end you in hospital. My next dose reduction is due in early May (2022) and plan to go to 0.125mg for another 4 months before halving 1 or 2 more times before stopping.

My prediction is my libido will increase again but I might get a relapse or partial relapse of the FND and some of the physical PSSD symptoms (flaccid glans and numb glans)


I might add while I tried probably 15 or 20 different ssri/snri back when I first got depression and chronic fatigue in 2014 I never got PSSD from any of them. I was on Moclobemide from 2015 to current but the Rexulti was added due to Moclobemide partial effectiveness in early 2019 and but late 2020 I got all the side effects including sexual problems which I was ok when I was on Moclobemide the whole time and even improvement from the original sexual dysfunction caused by the depression in the first place.

My hypothesis is while people who do not get PSSD from SSRIs (but might otherwise be intolerant of them like I was) can be effected by newer APs due to their multi neurotransmitter and receptor targets with often different actions for each of the targets just messes up the entire brain's neural network and the PSSD symptoms are likely a small part of a much wider functional problem, hence FND emerging for some people like me upon discontinuation.

The good news is that it often can and does return back to baseline but can take a few years, the longer a person is on an AP the longer the neuro adaptation takes to return to baseline and that is true for all APs. I was on them for a total of 2.5 years not including the reintroduction from Jan this year at the micro dose. My FND symptoms have improved greatly in the last 2 months and often improves in waves and sudden step like fashion. Sometimes you get a relapse after a long steady period of no improvement and then few days later it suddenly improves again but several steps forward and then the next lot of improvement might happen the same way.

My glans numbness improved like that way. 3 months of no improvement after a sudden sensitivity improvement from 0-10% feeling it was at about 50% sensation. Then it stayed like that for 2 months and then out of the blue it went to 10% again and up and down to 70% over a few days, then to 5% the following week and then over night went to 95% and had hovered from 85% to 95% since.

AP withdrawal is painful and extremely slow for nearly everyone taking them, unlike regular antidepressants for most people which recover after 6-12 week. Issues thought permanent like tardive dyskinesia actually do recover but they take 2-5 years of being drug free some new studies show, they are thought to have always been permanent as most patients aren't followed up long term over many years in older studies.

I am keeping regular updates in the general thread regarding my journey coming off Rexulti and Mocloemide (although Moc has caused me 0 issues).
Would explain why I felt like I was in hell after stopping Rexulti cold turkey. I think I was on 3mg or so. It was a high dose. The PE was so bad and once I connected the medication to the PE I stopped taking it immediately, and boy, was that horrible. I felt like I was in an episode of Black Mirror for several months. It was one of the worst experiences of my entire life and I have been through some ****.

Very interesting you had these issues from Rexulti. The fact that it isn't an SSRI seems to have no impact on the fact that it can and does cause severe sexual dysfunction.
6-Eggs!
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by 6-Eggs! »

Did you experience any physical symptoms after stopping Rexulti? like sensory/motor issues?

Good to confirm I am not the only one who had issues coming off them. I am still on them (reintroduced in Jan to stop the symptoms from worsening and extreme anxiety) and in the general thread area I have my own thread with history and ongoing updates on my progress. I mentioned the last feel weeks I have been feeling down and the original Rexulti side effects have crept back in, in the delayed fashion like when I was first put on them. I had uncontrollable extreme sadness the last 3-4 days earlier in the week, which would come about after 8-9pm and got really bad at night where I would cry hard for no reason and feel totally hopeless even though my physical symptoms are mild now and have otherwise been the best for months. Also started having bad sleep/no sleep in the last week.

I am taking 0.25mg at 5pm and I was starting to think maybe the Rexulti is causing this? So I skipped 2 days of taking it and boy did it help. I slept great the first night I skipped and got some sexual function back that was pretty good for the last 2-3 months, last night my libido was off it's face. I had sex twice with my GF in 15-20min and came so hard both times and the pleasure was beyond ecstasy. Like Wow!

I still haven't felt the usual withdrawals yet, though I feel bit anxious but good anxious like I am excited to get out and do things which is kinda odd and when I woke up last night I had weird mint like coldness and crawling skin sensations on my neck, face and down the middle of my back between my shoulder blades. I have not had this specific sensation yet and it's new. I also gained the ability to nearly fully recover soft glans syndrome, doesn't always work but in the right mind set it worked so much better than since I got sick in November last year.

I am restarting the dose tonight and seeing my doc in an hour to discuss a compounding script for 0.125mg ,the next halving and report the results of the temporary break from the drug. I am due for the next halving in 3 weeks but I am thinking while I wait for the custom dose compounding I can do a 2 day on and one day off schedule to start an earlier pre-reduction. Alternate days is equiv to halving the dose but 2 on and 1 off should be like 2/3? and hopefully negate and sudden halving which can be a bit harsh for about 7 days before your brain get used to the lower amount.

I estimate based on data from a PET scan study that 0.25mg I am currently on is about 35-40% receptor occupancy. 0.125 should be about 25%. I want to try stop at 1/64th or even 1/128th of the 2mg dose so I don't have issues and do it maybe every 2-3 months instead of the 4 months for this halving and stopping at 1/32nd. So take the same time overall but halve quicker but more often so the reduction is down to a much lower dose but smoother stepping down.
OCDemon
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by OCDemon »

6-Eggs! wrote: Thu Apr 21, 2022 2:19 am Did you experience any physical symptoms after stopping Rexulti? like sensory/motor issues?

Good to confirm I am not the only one who had issues coming off them. I am still on them (reintroduced in Jan to stop the symptoms from worsening and extreme anxiety) and in the general thread area I have my own thread with history and ongoing updates on my progress. I mentioned the last feel weeks I have been feeling down and the original Rexulti side effects have crept back in, in the delayed fashion like when I was first put on them. I had uncontrollable extreme sadness the last 3-4 days earlier in the week, which would come about after 8-9pm and got really bad at night where I would cry hard for no reason and feel totally hopeless even though my physical symptoms are mild now and have otherwise been the best for months. Also started having bad sleep/no sleep in the last week.

I am taking 0.25mg at 5pm and I was starting to think maybe the Rexulti is causing this? So I skipped 2 days of taking it and boy did it help. I slept great the first night I skipped and got some sexual function back that was pretty good for the last 2-3 months, last night my libido was off it's face. I had sex twice with my GF in 15-20min and came so hard both times and the pleasure was beyond ecstasy. Like Wow!

I still haven't felt the usual withdrawals yet, though I feel bit anxious but good anxious like I am excited to get out and do things which is kinda odd and when I woke up last night I had weird mint like coldness and crawling skin sensations on my neck, face and down the middle of my back between my shoulder blades. I have not had this specific sensation yet and it's new. I also gained the ability to nearly fully recover soft glans syndrome, doesn't always work but in the right mind set it worked so much better than since I got sick in November last year.

I am restarting the dose tonight and seeing my doc in an hour to discuss a compounding script for 0.125mg ,the next halving and report the results of the temporary break from the drug. I am due for the next halving in 3 weeks but I am thinking while I wait for the custom dose compounding I can do a 2 day on and one day off schedule to start an earlier pre-reduction. Alternate days is equiv to halving the dose but 2 on and 1 off should be like 2/3? and hopefully negate and sudden halving which can be a bit harsh for about 7 days before your brain get used to the lower amount.

I estimate based on data from a PET scan study that 0.25mg I am currently on is about 35-40% receptor occupancy. 0.125 should be about 25%. I want to try stop at 1/64th or even 1/128th of the 2mg dose so I don't have issues and do it maybe every 2-3 months instead of the 4 months for this halving and stopping at 1/32nd. So take the same time overall but halve quicker but more often so the reduction is down to a much lower dose but smoother stepping down.
I had akathesia and one of the most horrible senses of impending dread/doom for several months after stopping Rexulti. But I stopped cold turkey, and if I remember correctly, I was on a 3mg dosage, which I think is a lot for that drug.

For me, the premature ejaculation started almost as soon as I started it, and it never went away even over 2 years after stopping. The withdrawal from Rexulti was a living nightmare, one of the absolute worst experiences of my life (and I've been through some pretty awful stuff), but again -- I stopped cold turkey. I don't think I got any issues from withdrawal aside from the horrible anxiety and dissociation, which went away like a fog lifting after some months. It literally was like, over the course of a couple days, I suddenly felt way better, after a couple months of feeling like my soul had been taken by the devil. It was that bad.

The reason I stopped cold turkey was because of how distraught I was over the premature ejaculation, by the way. I basically panicked when I connected the dots, and did more of my own research and found that 5-HT1A, which it agonizes, is intimately linked to ejaculation function. And here we are today.

The weird thing is it does seem to have had some positive enduring effects. The premature ejaculation issue has basically ruined my life as far as sex and relationships go, like burned it to the ground and then dropped a nuclear bomb on the village. But the Rexulti seemed to change my brain permanently, in making me more able to handle difficult situations. Things don't bother me like they used to, and even if I'm obsessively fixated on something and feel awful about it, the sense of dread and impending doom that used to come with those thoughts doesn't show up anymore. Even though it's been years and I have had no signs of improvement, I'm somehow still able to be somewhat optimistic and think that maybe someday I'll figure out a way to recover from this.

Pre-Rexulti I might have just spiraled out into self-mutilation and drug abuse like I have in the past to cope with traumatic memories and/or new experiences. These days I've quit cigarettes and alcohol and drugs and am sober 99% of the time. I don't deprive myself completely and will have an occasional drink, but to Rexulti's credit, my addictions were never as bad since.

And ironically, the premature ejaculation is one of the worst things I've experienced. Not too much later I also got a hernia which screwed over my workouts. That felt like almost the last thing I had to look forward to. But despite all of this, mentally I'm still more stable than I ever was in my entire life.

Which is strange. I really hate what Rexulti did to me sexually, but at the same time, it did have some clear benefits that I can't deny, and it seems those benefits have persisted as much as the sexual dysfunction has.

And again: the negative effects I had from withdrawing from it, which were a living nightmare hellscape, went away eventually. I really thought I'd be stuck like that forever. But the fog lifted and I distinctly remember the first day I had a glimmer of feeling like "myself" again. I never fully went back to 'normal,' but I suppose that's a good thing, considering my previous 'normal' was struggling with self injury and drug abuse and mental breakdowns. So basically it took away my ability to have sex, but also gave me the ability to not care about that as much. Not sure how I feel about all of it now, but it is what it is!

Glad to hear you've had a good experience with your girlfriend. That's awesome. I have to remember to value similar experiences I've had. It can be difficult to appreciate the good moments when you're obsessively fixating on how things used to be, or always comparing yourself sexually now to how you were before the damage happened. I'm working hard lately to stay more in the present moment.
6-Eggs!
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Re: Enduring sexual dysfunction due to Abilify (an antipsychotic) - still considered PSSD?

Unread post by 6-Eggs! »

Interesting how both our cases are so different.

I never did drugs, only coffee so I am thinking that might be a factor?

Yes, my gf is amazing and so understanding and went though with me all of this.

Rexulti actually helped me for the first 12-18 months, even sexually. I suffered mildly low libido before then and low motivation/energy and slept a lot with heaps of fatigue. I didn't feel sad or anything like that before taking it.
But due to neuro-adaptation over time it eventually turned on me, causing sleep paralysis, bad restless legs and broken sexual arousal (I had interest and desire but couldn't convert that to sexual excitement) and waves of poor mood.

I had reduced to 0.125mg compounded dose for 4 weeks so far. I have seen some symptoms worsen but finally settling down. Glans sensation worsened slightly (more that I had more off days than good days, good days were far more frequent before reduction) and soft glans has one backwards but still hints of decent times here and there but way less frequent atm. I have also had a return of the raw/stinging/burning pain in my feet, lower legs and saddle and most of my penis (not glans though) this comes and goes but in the last week has reduced in frequency a lot.

Libido and arousal has improved a lot again but still not amazing but more than workable. Arousal during the night and morning are pretty intense, normal I would say and like it was before 2014 when I got the fatigue/depression. I never had much if any morning or night time wood during the whole period from 2014 to the last few months.

I have also had a big reduction in those dizzy spells that have the pressure headache like sensations. Those were quite debilitating.

Mentally I feel pretty damn good, energy, motivation, content. Worry free most of the time. Had I known that the Rexulti would have delayed side effects and adaptation from chronic use I would have quit long ago. In fact I actually did some 6-8 months into treatment and didn't really experience much withdrawal other than feeling a bit agitated. It was becasue I was poor at the time and couldn't afford the drug. I wish I had stayed off it while I could. But like you said, it is what it is, can't change the past.

Another 8 weeks and I will be dropping to 0.0625mg (1/32) and then stay like that for 2-3 months before going 1/64. Hopefully I should ease into these horrific persistent withdrawal without a replete of last year of ending up in hospital many times. From the time I stop is when the real recovery can start. I feel like I have a chance as I have seen so much improvement and I am young and had not abused my body with other substances before. If I could make a full recovery from hypopituitarism and severe near death weight loss as a result I believe I can recover from this.

To me, all the symptoms are manageable but the soft glans really annoys me and makes me worried about it's recovery. A few years back my glans wasn't great either as was the whole erection. Over time it improved before and during the non side effect period of Rexulti and the glans was the last to fully improve, so I am hoping is the say process but obviously starting from a lower point.

I have been watching videos about neurobiology and PAWS by Dr Snipes on YT and the way PAWS symptoms manifest and improve overtime is exactly like I am experiencing and PAWS takes anywhere from around a year to many years to recover, sometimes not fully or much if the damage is bad. But generally that is from many years or decades of drug use, especially at youth or elderly age. If the offending substance was taken from 25-55 age range there is a good outlook for recovery. Even though you still have issues, it might improve over time even if it's been 2 years. My sexual function was completely absent from 2014 to about 2017 and only then did it start to slowly come back on line with the biggest improvement in 2019 which I considered normal but then the Rexulti's delayed side effects messed it up again towards the end of 2020. This stuff takes years in most cases. Good luck! and keep in touch.
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