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ChessieCat: so I'm not the only one (Pristiq / desvenlafaxine)

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ChessieCat

Hi Sarabera NZ & bromor,

 

Thanks for popping in.  And hi to everyone else too.  I hope you are all doing okay.

 

Sorry I haven't been posting much elsewhere here lately.  I have been doing things in the outside world with my own little "save the world from suffering AD WD" campaign, trying to get the information out about 10% tapers because of the way the brain changes.

 

1.  One of the emails I received shocked but didn't surprise me (from a psychologist):  "I totally disagree with what you have written. It is ill-informed, technically incorrect, and a danger to patients who require the medication in the same way a diabetic requires insulin."

 

2.  Another email I received (psychologist):  "I understand you are well intentioned and wish to share your experience with others.

 

The thing is that there are many types of antidepressant medication and what you describe applies to some, but not others.  There are some that have less physiological habituation and thus need less gradual withdrawal than others.

 

So really you probably need to work with someone who understands both the pharmacology of antidepressant medications and their use in psychiatry if you wish to issue some guidelines for people contemplating ceasing to take this medication.

The doctors who understand psychotropic medications well are the psychiatrists.

Many general practitioners prescribe this kind of medication without really knowing a lot about it.

 

It is possible you were in this kind of situation where the prescribing doctor was not much help to you in dealing with ceasing to take an antidepressant.  I am sorry you had this experience. 

 

It does happen but it is not a universal one."

 

3.  And this one shocked me for other reasons than the first one (psychologist):  "This has been standard practice in medicine for decades."

 

(Underlining mine)

If you would like a copy of the email I sent out please PM me.

 

SUGGESTION/S?  I will not be responding the the first email mentioned, but am planning a response to the other two, however I am not sure what "professional" information I can point them to which will back up what I have said.  I wish to keep it concise and not just point them to books to read so if anyone can suggest something I would appreciate it.  Thanks.

 

UPDATE:  3 days again I dropped another 2.5 mg (now on 65 mg) and again noticed a slight increase in head pressure for the first couple of days but all going well with that.

 

CC

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nz11

Hi Sarabera NZ & bromor,

 

Thanks for popping in.  And hi to everyone else too.  I hope you are all doing okay.

 

Sorry I haven't been posting much elsewhere here lately.  I have been doing things in the outside world with my own little "save the world from suffering AD WD" campaign, trying to get the information out about 10% tapers because of the way the brain changes.

 

1.  One of the emails I received shocked but didn't surprise me (from a psychologist):  "I totally disagree with what you have written. It is ill-informed, technically incorrect, and a danger to patients who require the medication in the same way a diabetic requires insulin."

 

2.  Another email I received (psychologist):  "I understand you are well intentioned and wish to share your experience with others.

 

The thing is that there are many types of antidepressant medication and what you describe applies to some, but not others.  There are some that have less physiological habituation and thus need less gradual withdrawal than others.

 

So really you probably need to work with someone who understands both the pharmacology of antidepressant medications and their use in psychiatry if you wish to issue some guidelines for people contemplating ceasing to take this medication.

The doctors who understand psychotropic medications well are the psychiatrists.

Many general practitioners prescribe this kind of medication without really knowing a lot about it.

 

It is possible you were in this kind of situation where the prescribing doctor was not much help to you in dealing with ceasing to take an antidepressant.  I am sorry you had this experience. 

 

It does happen but it is not a universal one."

 

3.  And this one shocked me for other reasons than the first one (psychologist):  "This has been standard practice in medicine for decades."

 

CC

 Gee it really is sad what these people believe isnt it.

Thanks for posting this. Might even save it to my intro.

Hey why arent you replying  to email 1...You dont want to rock the boat....well email 1 is definitely a boat worth sinking!

You could always post your  sent email

 

 

Im confused what does this refer to "This has been standard practice in medicine for decades."   a 2 week taper? 10% taper? CT?

 

You could always do what Healy does and refer people to sa.

Heres a book rec for you 'The emperors new drugs by I Kirsch.

 

Sounds like reply one has been reading the nonsense of pharma puppet Mr J Leiberman.

 

The doctors who understand psychotropic medications well are the psychiatrists.

Thats the most laughable statement ive heard for a while. Can he refer you to anyone in particular ?

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ChessieCat

Some other responses:

 

"Thank you.  I will pass it on.  I like the metaphor of the trellis."

_____

 

"Good on you for getting this together."

_____

 

"I agree with the main points in your letter!  My view is as follows;

 

In my practice I have always told people if are taking SSRI antidepressants and decide they want to stop

after talking with their doctor, the process must be slow! The drug company recommendation is almost always too fast.

 

Rapid reduction in the medication can in my experience produce dissociative effects which can be disconcerting or even frightening to the patient. This can cause the person to conclude that they must keep taking the medication.  (going cold turkey is of course at the high end of rapid reduction of the medication)

 

My experience of nearly 29yrs as a psychologist is to (after discussing with their doctor) suggest they come off slowly over a period of 2-3 months and keep in contact with their doctor during this time.

 

Obviously post antidepressant medication the patient needs to find other ways of dealing with their depression.

My efforts are directed at giving the patient new skills showing them ways of reducing stress and dealing with anxiety and depression."

_____

 

"thank you,

 

This has been a big concern for me. It is very hard to advise clients about antidepressant use, usually conflicting the advice of their GP or Psychiatrist, and their own subjective experience. At the very least antidepressant complicate issues, especially regarding reactive depression."

_____

 

"Thank you very much for this email, and for sending out (I assume to psychiatrists and others Australia wide) your very reasonable and well-founded concerns regarding effectively withdrawing from SSRI/SNRI medications."

_____

 

"Thank you very much for this information - it segues well into a presentation I made to my peers about antidepressant medication."

________________________________________________

 

PLEASE NOTE:  I have tried to be careful regarding copyright etc but if there is anything I had done incorrectly please let me know.

 

Members are welcome to use any parts of the following Email & Business Card and refer to my website if they wish.  The website is meant to be a "one stop spot" for ease of getting important information and as a pointer to SA's website.  Please note that the website is not searchable.

________________________________________________

 

Email stats:  5,935 - successfully sent

                      2,014  - opened (but it is possible to read an email via preview without opening)

 

Unique click stats:  35 - Welcome to SA

                                  42 - Intro to WD Syndrome

                                  21 - Alto's Bio

                                  42 - my website

Total:                        140

________________________________________________

(blue font is for member info, it was not included in the email)
 
Dear Sir/Madam,
 
I am writing in the hope that by sharing information I have recently discovered people will not have to suffer debilitating withdrawal symptoms when reducing or stopping antidepressant drugs. Of course a person’s original condition, for which they were prescribed an antidepressant, will still need to be addressed with non-drug methods of coping taught/learnt.
 
My aim is to inform so people don’t suffer unnecessarily

The brain changes when an antidepressant drug is taken and it becomes physiologically dependent on the drug. Because of this the process needs to be REVERSED SLOWLY to allow the brain to adapt to not receiving as much of the drug.

Unfortunately, many people are advised to stop the drug cold turkey, reduce it too quickly, take it on alternate days or take different doses alternately. Any of these methods may, in many cases, result in the person suffering bad withdrawal symptoms. Although the person may feel okay for a while, symptoms can appear weeks or months later, with ongoing symptoms occurring for several years. When this occurs they may be told that their original condition has returned or may be diagnosed with a new condition. They may be put back on the same drug (possibly at an even higher dose), prescribed a different drug, or a combination of these.

 
When researching my own antidepressant withdrawal issues I found that there is a way to minimise withdrawal symptoms. The Surviving Antidepressants (link to Welcome to SA) support website recommends that a drug be tapered by 10% (of the previous dose) followed by a holding period of 4-6 weeks to allow the brain to adapt to receiving a little less of the drug. The analogy is given of it being like a plant growing on a trellis. If you take away the entire trellis the plant will collapse whereas if you take it away gradually the plant is able to adapt to the changes as parts of the trellis are removed.
 
To gain an insight into what stopping antidepressant drugs can do I urge you to visit the following links:
 
Introduction to Antidepressant Withdrawal Syndrome (link to SA's Intro to AD WD Syndrome)
Founder of Surviving Antidepressent’s Bio About Paxil Withdrawal (link Alto's Bio on patientslikeme)
My website (link to website I created with info links so I could keep the email as brief as possible but still point interested people in the right direction for)  adwithdrawal.weebly.com (this is not searchable) has links to more withdrawal and various other related information.
 
Thank you for taking the time to read my email and I hope I have provided you with some valuable information. If you have found it helpful I would appreciate you forwarding this email to anyone you think would benefit so that they too can become informed. I can be contacted via my website if you have any comments or questions.

Regards,

A Concerned Individual
(I am not receiving any form of payment for my website or contacting you)
________________________________________________
 
I have also printed up Business Cards to hand out to pharmacies and people who I might chat with:
 

Front:

  ANTIDEPRESSANT WITHDRAWAL

 

Information Website:

 

http://adwithdrawal.weebly.com

 

Support & Information Website:

 

http://survivingantidepressants.org

 

Back:

 

If antidepressants are stopped too quickly a person might feel okay at first but start feeling worse after a week or more. Doctor may say it's original condition back or diagnose new condition, not recognise it's caused from stopping the antidepressant.

 

Please visit websites listed to get information about antidepressant withdrawal issues and safer, better
ways to reduce antidepressants slowly to reduce withdrawal symptoms and their severity. I can be contacted via:
http://adwithdrawal.weebly.com

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nz11

Ahhhh ,,,So you are to blame for this recent flood of newbees. lol !

 

You are an australian national lifesaver.

Keep up the good work

will you be writing to those with prescribing privileges or just psychologists?

 

(I am not receiving any form of payment for my website or contacting you)...

what not even a little pharma freebee??

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Fresh

What an enormous undertaking CC , well done.  You might want to post about this in "Events , Controversies , Actions."

 

:P

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ChessieCat

Hi NZ & Fresh,

 

Thank you for your comments and acknowledgement of what I have done.  Yes it was a massive undertaking but one that I was capable of doing to spread the AD WD message.  I had been organising it for a few weeks and had started losing a bit of my drive to complete it (the website was supposed to be 1 page with a bit of information to accompany the email which I kept as short as possible in the hope that people would read it).  Finding out about Blue renewed my passion to keep going and get it finalised and sent (it was sent out on 1 Feb).

 

It was sent to Australian Psychiatrists, Psychologists and Counsellors and to NZ & UK (counsellors, if I remember correctly).

 

I am thankful for the small amount of feedback that I got, but my main hope is that I have given many people information which will they will recall later on.  Also hopefully even if they didn't read the body of the email, the email title and "My aim is to inform so people don't suffer unnecessarily" will also have made an impact.

 

CC

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KarenB

And for each person who responded, there will be a percentage for whom the message got through, but they just didn't respond for some reason.

 

You are an inspiration. 

 

I've been wondering about making business cards to pin up around my town saying something like "Stuck on anti-depressants?  See www.survivingantidepressants"  Or something like that.  Then I get this big fear that someone will know it was me, and I'll be in trouble.  Have to get over that one.   

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ChessieCat

Thanks KarenB, I'd thought about toilet doors :P but decided against that.  However, I'm considering Community Notice Boards (small printed notice A5 with tear-offs on the bottom) and possibly some leaflet drops in letterboxes.  I need to start doing some exercising to get my strength back (and my weight down) and have thought just this morning that I could combine the 2 which would give me a purpose to walk.  And the good thing about it is I can drive to different areas and just do what I can and enjoy the view as well.  I had thought about handing out leaflets in the street but like you am worried about getting into trouble.  CC

 

Edit:  I've just had a thought about the leaflets.  I could do up perforated ones (using my sewing machine, with an old needle of course) so they would be easy to tear off and pass on to other people.  And also just realised that kids love perforated things so they might just hang around a bit longer and get noticed.

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Petunia

:) :) :)  Wow! you're doing some great work here Chessie, well done. I checked out your site too, very nice, lots of good information. Thank you.

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ChessieCat

Thanks Petu.  And thanks for checking out my website.  I have done so much reading on this site and watched/listened to so many videos I just had to do something.

 

The great news is that emails opened has now increased to 2.021 & total website clicks 143.  One thing I will confess is that one of my mass emailing accounts got stopped so I only have the initial info for that account being 1,740 successful with 395 opened and 27 total website total clicks which was within probably the first half hour after I sent it.  The average of the other 3 accounts was 39% opened.  That correlates to 677 opened of the 1,740 successful.  Total could be about 2,311 using the average as a guide.

 

CC

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ChessieCat

Topic now in Events, controversies, actions this link:  Email Campaign

 

I've also sent out another 1,382 (UK & Canada).  CC

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ChessieCat

Hi Everyone,

 

Just letting you know that I have finally organised a printable PDF version of Dr Joseph Glenmullen's Symptoms List for a month (will print on 2 x A4 pages) together with a PDF blank version of the same for personalising (1 x A4).

 

dr-joseph-glenmullens-withdrawal-symptom-checklist

 

In the post underneath the one linked above there is a slightly revised version of the Excel spreadsheet I did last year.  (Added a few blank lines to the bottom and corrected a typo I found).

 

CC

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ChessieCat

UPDATE:  Spent the whole day out last Monday (a week ago) whilst my car was being serviced, tyres replaced and back & front brakes replaced.  Saw Star Wars (good movie) and just generally spent time chilling but did cover a fair distance (nothing I hadn't managed previously), then walked about 1 km back to the car place.  Totally wiped out and rested Tuesday, worked 4 hours Wednesday (office work with 1 hour total driving).  Still recovering up until Saturday.  Thankfully I didn't get the aches and pains like I used to but I am amazed at how 1 day out, which wasn't strenuous or activating, took so many days to get over.

 

Over the last couple of days I've noticed that mentally there has been an improvement and I am better able to string a decent sentence together and read and comprehend things which I hadn't been able to do over the last couple of months.  I'm also not napping very often.

 

I was able to supervise my 30 year old daughter yesterday with her refresher driving lessons around a quiet industrial area (she had almost reached the stage of going for her licence about 5 years ago) and I was relaxed and calm and able to hold my attention to the task for the 1 hour we were driving around.

 

If I didn't have the information from SA I wouldn't have considered it was the AD WD.  CC

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nz11

I've also sent out another 1,382 (UK & Canada).  CC

 

What about NZ, dont forget NZ.

 

nz

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ChessieCat

Don't worry NZ11 NZ will "get theirs"!

 

UPDATE:  Ears have been feeling blocked the last few days with headache on and off.  I had thought it was hayfever, but beginning to wonder if it's WD.  Something that I've realised is that it isn't necessarily the severity of a symptom which gets to you, but it can be a milder symptom which is unrelenting.  This is starting to really bug me.

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Sarabera

Wow, Chessiecat, you have been a busy woman! I'm getting tired just reading about it! Best of luck on your campaign.

Sarah

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ChessieCat

Hi Sarabera, thanks for your support.  I'm pretty tired now too, and wondering how I managed it.  But it gave me something to do and I did it.

 

UPDATE:  Dropped to 60 mg today.  Signature updated.  I've been dropping 2.5 mg every fortnight other than the first 2.5 mg drop which was after 3 weeks.  Plan to continue 2.5 mg fortnightly until I get to 50 mg than think I will hold for a bit but not sure how long.  Will wait and see how I'm feeling.  Might change to 2 mg fortnightly below 50 mg (to 40 mg).  Not sure about the next stage.  Also trying to work out what capsule dosages will be best especially if I end up splitting my dose (please see question below).  10s & 2s?  I need to plan this because of getting the tablets compounded and at the moment I'm fairly clear-headed.

 

Not feeling as tired as I had been, sleeping reasonably well most of the time.  Have had a bit of jaw tightness.  Biggest issue I have at the moment is getting very sore muscles after doing anything the least bit physical (eg I cleaned the bath at night and the next afternoon I had trouble walking) which makes it very hard to do anything.  I also realise that I need to do physical things otherwise I'm going to have bigger issues.  I'm just finding it hard to know how much and what to do.

 

QUESTION:  Once I get past 50 mg on tablets I'll be on compounded capsules (with slow release additive).  I'm wondering how best to transition from taking tablet to capsules.  Would it be better to split my dose?  Would it be a good idea to take 50 mg in capsules for a couple of weeks before doing the next drop?

 

Thanks in advance.  CC

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Fresh

Hiya CC.

There should be no problem transferring from tablets to capsules.

It's not the same as transferring to liquid , which is absorbed much faster. The whole

idea of having slow-release additives in the capsule is that the buffers and fillers ensure

the active ingredient is not absorbed in one hit.

 

There's also no need to consider splitting your dose. Pristiq is designed to be taken once

a day. Again , the slow-release additive ensures that the dose is absorbed over 24 hours.

 

I just realized this week that it will be much easier to go down in whole or half mg's , rather

than to stick to a percentage. Doesn't matter if it's less than 10% , I'm going to be rounding

up. It's all about KISS :)

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bromor

"I just realized this week that it will be much easier to go down in whole or half mg's , rather

than to stick to a percentage. Doesn't matter if it's less than 10% , I'm going to be rounding

up. It's all about KISS "

 

YES! The percentages confuse me so I've started my taper cutting minuscule amounts off of mg. probably just the WD effects on my brain. Glad to hear that others who are way more experienced than I am are doing the same ????

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ChessieCat

Hi Fresh and Bromor, thanks for stopping by.  Hi everyone else.  I hope you are all doing okay.

 

I'll admit that my reason for not tapering 10% monthly is because of what happened the first time I tried the 10%.  I don't want to end up dropping 10% and then having to increase it again if I get symptoms.  That wouldn't be good for my CNS and I'll admit that I'm a little bit scared of getting symptoms,  Having the capsules has been great and so easy.  I must admit I wonder how people weighing crushed tablets and counting little beads manage it.  Just counting my 12 mm approx long capsules is tricky (but I do have a bit of arthritis in my counting hand).

 

Capsules are very convenient, however last night I was setting up a tapering plan so I can work out what dose and how many of each capsules to get (they charged by the 100 capsules last time, regardless of the dose) and it's going to get a bit "messy" the lower I go.  I was thinking of dropping 2 mg fortnightly between 40 to 30 but that ends up being being greater than 10% per month.  Maybe easier if I change back to monthly 10% (or less  :P @ Fresh) tapering.

 

Like most people on here, I suppose, whoever would have thought we'd be deliberating? (not sure if that's the word I want) over doses and calculations etc.  It would be hilarious if the possible consequences weren't so serious.

 

Edt:  Just been looking at last nights calcs and realised that if I do 2.5 mg every fortnight that too will be greater than 10%.  Grrr.  This is not easy.

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apace41

If you think it's hard for you CC how do you think us Americans feel trying to figure out what a friggin fortnight is?

 

LOL.

 

;)  :P  :D

 

Andy

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brassmonkey

Once in physics class I had to calculate the speed of light in furlongs per fortnight. It lead to some interesting handicapping.

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ChessieCat

Hi Andy & Brass.

 

Well I've learned something.  I didn't realise that Americans didn't use the term "fortnight".  For anyone reading this and wondering it is 14 days/2 weeks.    And I'm assuming that you, Brass, were one of those who had to be handicapped???

 

Just as an aside, I left high school at 16 so never did calculus and had no idea what it was used for.  Some years ago I picked up a second hand book and did some research and discovered what it was all about.  I gave up very quickly because I realised I'd never need to use it!!!

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Fresh

You'll work it out CC. What if you do 2.5mg every 3 weeks (and why don't we have slang term for

a 3 week period?).

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ChessieCat

@ Fresh - great minds think alike.  I've been calculating on doing 20 days between drops (20 not 21 because of the multiples of 100 capsules!).  I hadn't considered anything other than multiples of weeks up until now as I've been dropping on the day after I work, but because I don't seem to be having any major issues and I might have another volunteer job soon I'm not going to worry too much about the days.  To work out the estimated monthly drop, if I drop every 20 days, I multiply the drop for each time x 1.5 which I think works out right.  So if I'm dropping 2.5 every 20 days it would end up being 3.75 for the month or the other way to calculate is to 2.5 x 3 and divide by 2.  Yep.  Just checked it and that is right.

 

I've also been working out what capsules I need and I should be able to afford the next lot, a batch of 600 (30s, 10s, 2s & 1s - I still have plenty of 5s) which should see me through until I reach about 35 mg.  I don't need to get them until end of May.

 

My planned taper schedule is (I've got a lovely calendar in Excel with a different colour for each taper and a Key next to it - have to have a bit of fun!!!):

 

between 50 & 40 mg - drop by 2 mg every 20 days

 

between 40 & 30 mg - drop by 1 mg every 20 days

 

Once I get lower the cost might be an issue, but then again it is my well being so I might just have to live with that.

 

I've just sent an email to Pfizer asking if they are planning to make 25 mg Pristiq available in Australia and if so, when.  It would make it so much easier and cheaper.  It would be nice if it happens prior to my compounding.  Fingers crossed.  Either that or the generics might bring one out.

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ChessieCat

UPDATE:  Ears are acting up.  Seemed to start yesterday and has go worse today.  Nothing unbearable, but just annoying when I get up and also when I turn my head.  Fairly sure it's because of my drop on Thursday.  If I am right, I am glad I slowed my taper.

 

Also, I've uploaded a Symptoms Recording Chart for noting symptoms throughout the day.  It is broken down into 1/2 hours blocks and is for a period of 1 week.

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Fresh

Chessie , it sounds like you're getting a bit obsessive. There are far healthier things to do than chart your symptoms every half an hour , lol.

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ChessieCat

:o:P I don't chart my symptoms at all!

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Fresh

I see , you've posted it on the thread on keeping a daily record of symptoms here http://survivingantidepressants.org/index.php?/topic/1779-rate-symptoms-daily-to-track-patterns-and-progress/#entry212402

 

I personally wouldn't encourage anyone to track their symptoms in half hour blocks - a once day summary is enough to keep a record without it becoming a major feature throughout the day.

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ChessieCat

Okay, I can see your point.  It was more for the people who don't seem to be able to keep a record of their drug and when the symptoms hit.  I'm okay for you to delete that post if you think it more appropriate.  Thanks.  CC

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nz11

Hi cc i noticed that Fresh posted a great typed up glenmullen 58 symptoms on someones post cant remember where, that was a good idea to type it out i have done so but not so neatly i dont know if this originated from you or from Fresh...but it was typed up really nicely...but i know you been working on checklists?? a bit lately...but id love a copy posted into my thread if thats ok. No pressure just anytime you pass through.

Im not talking about the spreadsheet.

thanks

nz

i kept a diary for two yrs would sum up the day as either hell, uncontrollable anxiety or ok.

ok generally meant im still alive!  Us country boys have to keep things simple!

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ChessieCat

Well I've got my reply from Pfizer and guess what, surprise, surprise NOT!!! :angry:  No plan to make 25 mg Pristiq available in Australia.

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nz11

Did they give you a reason?

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ChessieCat

No.  But I will reply and ask why.  Thanks for the idea.

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ChessieCat

And the reply from Pfizer:

 

"Although Pristiq 25mg may be available in other countries, this tablet strength has not been approved by the Australian Therapeutic Goods Administration (TGA) and is therefore not available in Australia."

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ChessieCat

UPDATE:  Just putting a note in here for myself and for others' interest.  Recently I've been feeling irritated when wearing certain materials/fabrics.  I'm fine when wearing pure cotton but synthetics give me a sort of light prickly feeling.  I'm sure it's not my washing powder.  It's like my senses are heightened which I'm assuming is just part of this whole absurd journey.

 

I'm not worried by it but just wanted to document it.

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