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How to talk to a doctor about tapering and withdrawal? What to expect?

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ChessieCat

I recently contacted PCCA - Professional Compounding Centers of America after another member had contacted compounding pharmacies in their area and was told that Pristiq could not be compounded (USA).  I am in Australia and have been getting my Pristiq compounded for the last 3 years.

 

I suggest that you contact the pccarx and ask them if your drug can be compounded.  Also mention that your doctor/psychiatrist says that it cannot.  If it is able to be compounded ask them to provide something in writing that you can give to the medical professional.  Also ask for contact details for the pharmacies in your area who can do the compounding.  

 

At least if you get the information from the pccarx you can then tell them that you have it from the horse's mouth that it can be done.

 

I have not provided Ranel's address because it may change in the future if this person leaves the organisation but this is the one I used and you can send it   Subject:   ATTN:  Clinical Compounding Pharmacist

 

customerserviceexternal AT SYMBOL pccarx DOT com

 

I received the following response:

 

Thanks so much for contacting us regarding this.  There are definitely some options on compounding this product [Pristiq] and we are happy to assist a pharmacy with the knowledge on how to do this.  We have many member pharmacies within the state of Washington that are PCCA members and would be able to assist this patient.  Do you know where in Washington State your contact is located?  If you can provide that information I can direct them to a pharmacy that is a PCCA member.  That pharmacy is welcome to contact me through our members only website or by calling customer service and I can assist them with a formulation. 

Thank you and have a wonderful day!

Ranel A. Larsen, Pharm D, RPh | Clinical Compounding Pharmacist

PCCA | 9901 South Wilcrest Dr. | Houston, TX 77099-5132

Ph: 800.331.2498    

Fax: 800.874.5760 | PCD Fax: 713-234-6009

www.pccarx.com

 

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BfromNJ
1 hour ago, ChessieCat said:

I recently contacted PCCA - Professional Compounding Centers of America after another member had contacted compounding pharmacies in their area and was told that Pristiq could not be compounded (USA).  I am in Australia and have been getting my Pristiq compounded for the last 3 years.

 

I suggest that you contact the pccarx and ask them if your drug can be compounded.  Also mention that your doctor/psychiatrist says that it cannot.  If it is able to be compounded ask them to provide something in writing that you can give to the medical professional.  Also ask for contact details for the pharmacies in your area who can do the compounding.  

 

At least if you get the information from the pccarx you can then tell them that you have it from the horse's mouth that it can be done.

 

I have not provided Ranel's address because it may change in the future if this person leaves the organisation but this is the one I used and you can send it   Subject:   ATTN:  Clinical Compounding Pharmacist

 

customerserviceexternal AT SYMBOL pccarx DOT com

 

I received the following response:

 

Thanks so much for contacting us regarding this.  There are definitely some options on compounding this product [Pristiq] and we are happy to assist a pharmacy with the knowledge on how to do this.  We have many member pharmacies within the state of Washington that are PCCA members and would be able to assist this patient.  Do you know where in Washington State your contact is located?  If you can provide that information I can direct them to a pharmacy that is a PCCA member.  That pharmacy is welcome to contact me through our members only website or by calling customer service and I can assist them with a formulation. 

Thank you and have a wonderful day!

Ranel A. Larsen, Pharm D, RPh | Clinical Compounding Pharmacist

PCCA | 9901 South Wilcrest Dr. | Houston, TX 77099-5132

Ph: 800.331.2498    

Fax: 800.874.5760 | PCD Fax: 713-234-6009

www.pccarx.com

 

It wasn't that they said it can't be,  they weren't willing to even entertain it.  They pretended to not even know what compounding is. 

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ChessieCat

If you want to get your drug compounded you are going to need to be assertive and/or find another doctor.

 

If you get the information from the pccarx you can present them with it, it in writing, and they won't have any excuse.

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BfromNJ
19 hours ago, ChessieCat said:

If you want to get your drug compounded you are going to need to be assertive and/or find another doctor.

 

If you get the information from the pccarx you can present them with it, it in writing, and they won't have any excuse.

Well then I suppose I have to find another doctor.   Because those two will not help me.  

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BfromNJ

Ive hit a roadblock with my regular GP and psych nurse.  I will not be going back to my psych nurse, my last visit was upsetting to say the least.  He would not even answer me when I was speaking with him, just typed away on his computer looking for another me to put me on.  no way.   The way I am feeling, I was not in the frame of mind to argue with him and ive had it with his condescending, invalidating way.  Taking phone calls during my session and texting on his phone.     Nothing I say is taken seriously, just written off as yet more anxiety or my ocd.  So if I cannot find another doctor to help me with a taper, I need to do so myself.   I am frustrating and sick of being on meds that are making my symptoms worse everyday.  I feel that time is running out and I will be like this forever. 

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carefulprayerful

Not sure if this is the right forum for this.  I haven’t read the whole thing through. 
 

I have a psychiatrist who knows about what I am doing and is collaborative, for which I try to be grateful. (I will ask if I can share her name online.)  I have not told her the full extent of my symptoms yet.  I usually smile and nod to a wide extent. 

I currently get to work from home a couple days a month.  Without the commute and stressful environment, my WD symptoms are much lighter.  
 

I would like to work from home (WFH) more, but this is not really done at my company (except for people that live in other states).  My employer is moving in the direction of more WFH, but there has been no policy change yet.  
 
I was thinking about asking my psychiatrist for a note, but then my employer would know her specialty. 
 
I was thinking maybe I could ask my PCP for a note since he knows about my WD experience (I was actually in the ER recently for fainting for a few seconds and vomiting unconscious.  The ER attributed the vomiting to WD.).
 
When I first started tapering, my psychiatrist said to me when I asked about this, « I don’t think that would help you. ».  Since then of course I have landed in the ER, and I still haven’t fully described to her the list of symptoms I have (mostly physical).  
 
I know someone at another organization who had a baby and simply asked to WFH.  They said yes.  
 
Of course maybe this is all wishful thinking.  
 
I mean the truth is my colleagues would probably ask me why I was working from home more, and it would be awkward. I’d have to make something up. 
 
I guess want to look able bodied and able minded if I can, tho I think I could taper faster if I could WFH.  
 
Any thoughts welcome.  
 
Thank you. 

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Altostrata

Best not to bring up seeing a psychiatrist with your employer or anyone in your employer's human resources department.

 

Can you ask for more WFH because of covid-19 risks?

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carefulprayerful

What I actually did one day in January was I simply decided to start working from home.  I took to heart what I had heard, "be the CEO of your own life."  The next day I went to my primary care doctor to ask for a note, which he agreed to write.  My company switched everyone to WFH in March!

 

My primary care doctor said he could write me prescriptions for Lamotrigine so I wouldn't need to go to a psychiatrist.  He said it is not a complicated meditation.  I have enough Risperidone to last a year and a half (before it expires), but I figure I could get that from him, too.

 

I canceled my most recent appointment with my psychiatrist.  I emailed her to say I'd reschedule with no intention of doing that, but she said she would like me to reschedule now.  I don't need her for Rx, but honestly I am considering making one more appointment to present her with academic journal studies, just to speak truth to power in a respectful way.  I think the $100 for the appointment would pay for itself for the fact that I could use my voice.  I think I have Stockholm syndrome, and it is hard for me to speak truth to her because I bear some affection for this person.  

 

Alto, do you think this is worth it?  She has been collaborative in this tapering process, but I think I need to speak the truth in order to feel empowered.  I have found it easier to speak up to a bully than to speak up to authority, but it may be time to grow up in that sense.  With global protests concerning police brutality, I just don't want to be like a sheep.  The money may be a paltry fee for the satisfaction I'd derive.  My psychiatrist is basically a good person, she just made a misguided choice of career.  I can say things in a very non-conflictual way.

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Altostrata

Save yourself $100. Just mail her the studies with a note that you don't believe her advice has been helpful, though you think she means well.

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carefulprayerful

@AltostrataThank you for that wording and money-saving tip 😃.  I just sent the letter.  I included copies of the following:

  • Book: Anatomy of an Epidemic pp. 194-195 concerning a study by Martin Harrow.  "...here is how the long-term outcomes stacked up, from best to worst: manic-depressive off meds, schizophrenia off meds, manic-depressive on meds, and then schizophrenia on meds."  
  • Drug label for Risperidone: "...there are no systematically obtained data to support the use of RISPERDAL in such longer-term treatment (i.e., beyond 3 weeks)."
  • Journal article: Effects of 10 to 30 years of lithium treatment on kidney function.  "About one-third of the patients who had taken lithium for 10–29 years had evidence of chronic renal failure but only 5% were in the severe or very severe category." 
  • Journal article: Schizophrenia, neuroleptic medication Schizophrenia, neuroleptic medication and mortality and mortality.  "Irrespective of chronic somatic diseases. Irrespective of the factors modelled, the relationship the factors modelled, the relationship between number of neuroleptic drugs and between number of neuroleptic drugs and mortality remained strong and statistically mortality remained strong and statistically significant….Obviously there are other factors associated Obviously there are other factors associated with mortality in schizophrenia and the with mortality in schizophrenia and the association with neuroleptic drugs was very association with neuroleptic drugs was very clear."
  • Journal article: Congruencies in Increased Mortality Rates, Years of Potential Life Lost, and Causes of Death Among Public Mental Health Clients in Eight States.  "Deceased public mental health clients had lost decades of potential years of life; averages varied from 13 to more than 30 years depending on the state and year...Most public mental health clients died of natural causes in all six states. The leading causes of death for mental health clients are similar to those found nationwide and statewide; they include heart disease, cancer, and cerebrovascular, respiratory, and lung diseases."
  • Journal article: Predicting the long-term risk of tardive dyskenesia in outpatients maintained on neuroleptic medications.  "Results: On the basis of 5 years of follow-up, we estimate the risk of persistent TD to be 32% after 5 years of neuroleptic exposure (95% confidence interval [CI] = 23%-43%), 57% after 15 years of exposure (95% CI = 47%-66%), and 68% after 25 years of exposure (95% CI = 58%-77%). For patients with 10 years of previous neuroleptic exposure, the risk is 15% after 5 more years of exposure (95% CI = 7.2%-27%) and 38% after 15 more years of exposure (95% CI = 24%-53%). Our results fall within the wide range of results found in other studies of TD incidence. Differences in incidence across studies may be explained in terms of patient characteristics and other methodological factors."
  • Book: Psychiatric Drug Withdrawal by Peter Breggin. pp. 120, 124, 125, 127. 
  • News article: The Impoverishment of Psychiatric Knowledge.  The Psychiatric Times. (entire article)

I found all the studies online without membership to any database.  I sent the cover page of the book or first page of the article, along with the selected pages where I underlined the above quotes.  

 

Putting together the letter and enclosures brought up some sadness and bitter feelings.  I just got back from the post office, however, and I feel free.

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Glosmom

Way to go @carefulprayerful!!  Proud of you and what a good list of evidence.   Hugs, glosmom

 

 

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Altostrata
5 hours ago, carefulprayerful said:

I just got back from the post office, however, and I feel free.

 

Consider it a closure ritual.

 

I'll bet she'll love the reading matter.

 

How are you feeling now that you're on a minimal dose of risperidone? (It could get more minimal, of course.)

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carefulprayerful

Thanks @Glosmomfor the encouragement!  💛

 

On 6/20/2020 at 9:34 PM, Altostrata said:

How are you feeling now that you're on a minimal dose of risperidone? (It could get more minimal, of course.)

I am feeling much better.  Things that used to cause a wave--exercise, having to get up early for something and not getting a full night's sleep, my menstrual cycle--no longer have much effect.  I rarely have symptoms, and when I do, they are mild and momentary (abdominal pain, stomach ache, headache, ears ringing, muscle tension).  I feel almost normal.  I'm so grateful to be writing that. Current dose is 0.185 mg risperidone.  I am currently microtapering for a total of 10%/month.  I'm not sure when to start tapering at a faster rate.

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