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data17
On 12/31/2017 at 3:46 PM, RachelSusan said:

Hi data17,

I just read your posts.  Sadly, I don't have any words of wisdom. It's unconscionable that a medication would be discontinued without a year or two warning. I am very so sorry for your struggle.

Rachel

Thank-you Rachel :)

It seems that quite a number of meds have become suddenly unavailable or in short supply this winter in the UK due to issues around pricing. I have now been prescribed another alternative, but will have to see how that goes.


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

Update: I spoke to a GP on Wed morning after a very rough night. She wanted specialist input and arranged for me to speak to a psychiatric nurse practitioner at the hospital. It turned out to be 2 nurses, who were quite friendly and understanding that this was due to sudden discontinuation at a stressful time of year, not relapse. After discussing what I had tolerated in the past, they got authorisation from a psychiatrist, and I came away with an instruction for my GP to prescribe 0.5mg haloperidol capusles up to 3 times per day. I had suggested this. They gave me a few days supply to get started and a few diazepam pills. So I handed the note to the GP surgery and managed to see family later that day, which I had said I would do. The GP I spoke to on the phone was not my usual one, but she made an appointment with my usual one for Jan 3rd to follow up.

 

I slept 8 hours that night, still felt run down, but mentally better and was looking forward to going away for 2 nights to a hotel by the sea - this was planned months before. It's only an hour by bus, so I didn't need to get up too early. I packed an overnight bag and went to collect the script from the GP and go to the chemist. The 1st chemist was out of stock, then so was the 2nd - the pharmacist came out and told me there is a national shortage of these capsules too!! She helpfully phoned the 3 other chemists in town and only one had any, but they did have 70 capsules (out of 84 which I was supposed to get). So that would keep me going for a while.

 

I had my holiday but felt quite ill, exhausted and poor appetite, then after the second night had watery diarrhoea. I came back on Saturday and just lay on the sofa with the heating turned up and watched TV. Not depressed, but flu-like tiredness, and remembered how some other family members had felt sick over the holidays (suspected norovirus or similar) and wondered if some of my sxs were in fact not withdrawal, but a common bug. 

 

I have been thinking what to do about the shortage of haloperidol 0.5mg capsules.

I found out it also comes as 0.5mg tablets and 1.5mg tablets ( and higher strengths) and in both cases there appear to be several suppliers. I had taken 2mg trifluoperazine for about 3 weeks before stopping at the end of December and a similar "equivalent dose of chlorpromazine in December, with gaps where I have taken nothing, so consider myself adapted to 2mg trifluoperazine. The nurses told me that 1mg haloperidol is roughly equivalent to 2-3mg trifluoperazine. So it is conceivable that I could manage on just one 0.5mg haloperidol capsule per day and that way the 70 capsules would last over 2 months, so plenty of time to get tablets or at worst taper and stop from a lower dose and at a less stressful time of year. I am thinking of trying that for 2 weeks and see how I get on. 

 

I considered whether I might take another med - risperidone had been suggested and the pharmacist told me there are no supply problems with that - but decided against it, because I had bad reactions to it in the past, and olanzapine is even worse, and I am not trying something new, especially not any sedative 2nd gen drug which will not substitute well  and will just create extra problems.

 

 I looked at the cost. Risperidone is less than £1 for a box of 28, the 0.5mg haloperidol capusles are about £6 and the 0.5mg haloperidol tablets are about £27. The lower concentration trifluoperazine liquid I had been taking was £112 per bottle and I needed 3 bottles a month !!!, while the higher concentration liquid was about £69 but only one bottle per month. ( I am remembering these prices off the top of my head so may be slightly inaccurate). I am shocked by all this!!

 

I posted about the medicine shortages in the News section. 

http://survivingantidepressants.org/topic/16649-articles-on-uk-drug-shortages-from-december-2017/

 

Edited by data17
to add a link and delete a paragraph

  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

I have updated my signature to show that I am now taking haloperidol, following a forced rapid taper and CT from trifluoperazine last November, then failed attempt to replace with chlorpromazine.

 

I have now been taking haloperidol for 3 weeks. I started taking 0.5mg per day. The suicidal thoughts I had around Christmas went away, but I was still being flooded by thoughts about the nature of reality, signs, meanings, paranoia etc, plus bad acid reflux a normal withdrawal symptom for me whenever I reduce the dose.

 

Based on the article below, 2mg haloperidol is roughly equivalent to 5.47mg trifluoperazine, so 0.5mg haloperidol would be 1.37mg TFP and 1mg haloperidol would be 2.74mg TFP. I thought that 0.5mg haloperidol was maybe too big a drop.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3677042/

 

Decided to increase it to 1mg per day and the thoughts have subsided to a manageable level, but I am not sleeping so well and the acid reflux is still an issue. The package insert lists "trouble sleeping and restlessness" as a common side effect, and is worse on 1mg than 0.5mg, so I think it's a side effect - due to akathisia. 

Don't want to keep changing doses, but have been taking it at night, so have decided to take it on waking instead, so that hopefully the akathisia will have worn off a bit by bedtime.

The reflux is also worse on waking, so hoping that will also improve.

 

Otherwise, due to the rapid taper last year and bumpy transition to new meds, my aim is to stabilise and hold for a long time eg 6-18 months.

Does this sound like a good plan?

 


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

I was not doing great after a month on haloperidol - severe acid reflux, oesophagus pain, crunching of head and neck, poor sleep, unable to concentrate, akathisia-type urges to do something rash.  

 

A big blow was the news that a support organization that I depend on for any social contact has lost funding for next year and if they can't find it from elsewhere by the end of February then they will have to close. That would be a disaster for my taper and my life. There is no help available because of funding cuts. I have signed a petition, otherwise I can write to politicians. This stresses me out. I am not in control.

 

I phoned a pharmacy to ask if trifluoperazine was available again and yes the liquid is available, for now. I got some and stopped the haloperidol. The reflux and oesophagus pain and head crunching stopped. My anxiety and paranoia continues. Abdominal pains have returned. I have been referred to a psychiatrist to discuss tapering in the face of limited medication supplies.


I think tapering is a really bad idea while my support system is so unstable, but I can't relax knowing that the trifluoperazine could be suddenly be unavailable again and it's unlikely that another drug could substitute, since I've already tried two substitutes and neither was at all a good match. I'm not wanting to try loads of drugs to find one that suits, as that would be just as destabilizing as stopping CT. The occasional diazepam is a safer bet. 

 

I'm very anxious about this. I am going to try and go out tomorrow to the coast to get out of my head. If I can get some sleep.


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

Update: I am stabilizing on 4mg trifluoperazine after it was unavailable for 2 months. I think I will hold here for another month.

 

My sleep has improved to 5.8hrs average per night in March from 5.2hrs in Jan. My acid reflux has got much less frequent. 

My concentration has improved to the point that I am able to start a part-time course. 

I still feel run down, but I am more optimistic.


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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ChessieCat

That's great news.  Things definitely sound like they are improving for you.


Being very patient.  I'll get there - slowly.  ETA mid 2021

ADs:  25 years - 1 unknown, Prozac (caused muscle weakness), Zoloft/sertraline; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after)

Pristiq:  50mg 2012, 100mg beg 2013 (mild Serotonin Toxicity)

Began tapering Oct 2015  Current from 12 Sept 2020:  Pristiq 0.625 mg (compounded)

My tapering program

My Intro (goes to my tapering graph)

My website - includes my brief history + links to videos & information on the web

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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data17
8 hours ago, ChessieCat said:

That's great news.  Things definitely sound like they are improving for you.

 

Thank-you ChessieCat.


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

Update: Since I last posted I have been gradually reducing my dose. For the past 3 months I have been taking about 2mg stelazine per day. It is about half of what I was taking last year. I'm planning another small reduction in the New Year. 

 

I didn't sleep well in the summer, but that got better once the days got shorter - on average it's 5.5-6 hours a night. The other main symptoms are severe abdominal pains when stressed and bouts of acid reflux. Also, if I reduce too much, my muscles feel floppy and weak, which I experience as a feeling of mental weakness, which can then make me feel powerless and depressed, but it is easily sorted by making a smaller reduction or holding longer.

 

I feel ill about 46% of my days, but that is an improvement on the last 2 years! And more or less like it was for decades before I started tapering. 

 

My memory and cognition is way better (on the days when I am not physically ill) so when I get anxious I am better able to come up with ways to counter it. Admittedly I got totally stressed out about Christmas, due to family pressure. This happens every year. I ended up taking diazepam to get through that, but there was no suicidal thoughts which I had last year. 

 

I continue to study part time. The main things that worry me are political. 

 

Best wishes for 2019!

 

(i will update my signature later) 

 

 


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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ChessieCat
12 minutes ago, data17 said:

Admittedly I got totally stressed out about Christmas

 

Other members have noticed an increase in their withdrawal symptoms over the Christmas season.  It's not unusual.

 

Thank you for coming back to update us on how you are going.  It sounds like you are coping well under the circumstances.

 

Direct link:  Account Settings – Create or Edit a signature


Being very patient.  I'll get there - slowly.  ETA mid 2021

ADs:  25 years - 1 unknown, Prozac (caused muscle weakness), Zoloft/sertraline; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after)

Pristiq:  50mg 2012, 100mg beg 2013 (mild Serotonin Toxicity)

Began tapering Oct 2015  Current from 12 Sept 2020:  Pristiq 0.625 mg (compounded)

My tapering program

My Intro (goes to my tapering graph)

My website - includes my brief history + links to videos & information on the web

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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data17

Thanks for the link ChessieCat. That's it updated. I couldn't see how to do it on my tablet. 

 


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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ChessieCat

Thanks for updating it.  It's very hard to read with all the read font.  Could please change it to a different colour?  Thank you.


Being very patient.  I'll get there - slowly.  ETA mid 2021

ADs:  25 years - 1 unknown, Prozac (caused muscle weakness), Zoloft/sertraline; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after)

Pristiq:  50mg 2012, 100mg beg 2013 (mild Serotonin Toxicity)

Began tapering Oct 2015  Current from 12 Sept 2020:  Pristiq 0.625 mg (compounded)

My tapering program

My Intro (goes to my tapering graph)

My website - includes my brief history + links to videos & information on the web

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

Share this post


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data17

OK, that should be better. 


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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ChessieCat

Thank you.  Much better and very much appreciated.  😊


Being very patient.  I'll get there - slowly.  ETA mid 2021

ADs:  25 years - 1 unknown, Prozac (caused muscle weakness), Zoloft/sertraline; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after)

Pristiq:  50mg 2012, 100mg beg 2013 (mild Serotonin Toxicity)

Began tapering Oct 2015  Current from 12 Sept 2020:  Pristiq 0.625 mg (compounded)

My tapering program

My Intro (goes to my tapering graph)

My website - includes my brief history + links to videos & information on the web

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

Share this post


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data17

Updated my signature as now on lower dose.

Much the same symptoms and life as in my last update. 

At times my brain is seized up and I can't do much, other times I feel my intelligence returning.

 

To be honest, I am afraid that permanent damage has been done, which does not make me feel that great.

But I am coping just as well on 1/10 of the dose I was on when I started, in fact slightly better.

So I am going to keep going. 🙄


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

So, that's 10 days now on 0.4mg TFP and doing OK.

 

I saw a nurse at the GP surgery yesterday because of hemorrhoids, which have developed due to constipation.

She has prescribed cream and suppositories. This has happened before while tapering.

It is horribly uncomfortable, but not a reason to stop tapering. In fact it is a reason to get off the meds, because I now think they have caused my IBS symptoms.

Overall, during my taper, many of my digestive symptoms have gone away, such as acid reflux and abdominal pain.

 

Mentally I am OK too  ie in the past when I have reduced too fast I have felt very subdued and depressed after about 5 days, like my muscles are over-relaxed,

which has sometimes led to suicidal thoughts and often made me unable to do basic tasks. This is what has limited my taper.

But this hasn't happened recently. In fact, now I am noticing that after I take my meds, I often get headachey and irritable.

 

I feel it's almost time to stop. I have time off from my studies, so can deal with any increase in symptoms.

 

 

 

 

 


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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Myrah

Hi @data17..how r u doing now? Have you tapered fully?


Jan 2017 to Sept 2017 -Daxid.  100mg + Sizodon 1mg 

October 2017 to Dec 2017  -T.Serilift.   100 mg

January 2018 to March2018- Trinicalm plus 5mg + Zisper plus

April 2018 to May 2018- Trinicalm plus 5mg 

Aug 2018 to Nov 2018- Daxid 50mg + Sizodon 1mg

Stopped CT in Nov 2018

May 2019 to December 2019 -300 mg gabapentin and 2.5 mg Trinicalm plus tablet-ContainsTrifluoperazine (2.5 mg) + Trihexyphenidyl (1mg)

 

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data17

Hi Myrah

 

Thanks for asking. 

I am still taking 0.5mg trifluoperazine. (I will update my signature later).

I see you are taking that drug too.

 

My father died at the end of June and all hell broke loose. I ended up being arrested after reacting badly to a "safety check" by the police in the summer.

Now I am getting some nurse practitioner support, but I am waiting to hear the outcome of the court case. I am extremely worried and have felt suicidal over this.

I did try increasing the meds, but in fact that just caused side effects of agitation, IBS and headaches, without helping the anxiety, so I'm holding at this dose for now.

 

I will say to be very careful and make sure you have other support or can cope yourself before changing too much. 

 

data17

 

 

 


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

Update:

I am appearing in court tomorrow to hear my sentence. 

I am quite calm now as I've done all I can, it shouldn't affect my taper if it comes to the worst. 

Listening to this repeatedly is cheering me up.

 

 

 


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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data17

Hello

 

I have paused my taper and increased my dose while dealing with a lot of stress.

 

I am currently taking about 2mg trifluoperazine and 15mg procyclidine, with diazepam occasionally (will update signature later).

 

Since my last post, I've moved to a new area, completed a degree, been admonished for a breach of the peace charge, and dealt with general disruptions due to coronavirus. 

 

Not about to make any sudden changes right now, but looking towards resuming taper shortly.


  • 1991-1998 Haldol, olanzapine; 1996-2014 diazepam; 1999-present procyclidine 12.5mg, trifluoperazine (Stelazine/TFP)
  • 2015 - Oct 2017 :taper Trifluoperazine (TFP) 7.7mg to 3.4mg 
  • Nov 2017: TFP suddenly unavailable - CT! 
  • Jan 2018 :TFP back in stock as liquid ~4mg per day 
  • June 2018:~3mg TFP 
  • Oct 2018 :~2mg TFP 
  • Mar 2019: ~1mg TFP
  • Apr 2019: ~0.7mg TFP
  • 21st May: 0.4mg

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