HELP MEDICATION ENQUIRY

[Tobias1234]

V best friend in Seville, Spain..with PSP end stage...there is NO palliative care avail..i am senior pall care nurse from UK.Recent DRUG CHANGES..VIA PEG TUBE INCLUDE;

OLANZEPINE INCREASED FROM 5MGS TO 10MG...AT SAME TIME STARTED V HI DOSE AMITRYPTILLINE 50 MGS...SINCE THEN MY V DEAREST FRIEND IS ' KOSHED' OUT...I AM CERTAIN OVERSEDATED...MY PALL CARE PRACTICE DOES NOT USE AMITRIPTYLLINE AS IT HAS MANY HORRIBKE SIDE EFFECTS

MY CONCERN IS;

DOUBKE DOSE OLANZEPINE STARTED AT SAME TIME AS STARTING NEW DRUG AMITRYPTILLINE AT 50MGS ( VV HIGH) FR SECRETION MANAGEMENT ???? THIS IS MADNESS IN MY UNDERSTANDIN..COUGH REFLEX KNOCKED OFF TOTAL NOW;

...2 SEDATING DRUGS CHANGES AT SAME TIME..1 NEW..AMITRIPTYLLINE STARTED AT 50 MGS ...!!! IN UK NEVER USE AS IT VV OLD DRUG ..MANY HORRIBKE SIDE EFFECTS...AND IT A HI LEVEL AT SAME TIME AS DOUBLE DOSE OLANZEPINE STARTED..2 SEDATING DRUGS INCREASED/ STARTED SAME TIME...SO VV DEAR FRIEND NIW' FEELING NOT RITE IN HEAD'.. AND VVV DROWSY.

ANY IDEAS...I AM TRYING TO OPTIMISE ' OVER SEDATING'...+GET AMITRIPTYLLINE STOPPED AND HYOSCINE PATCH STARTED...

ANY IDEAS...PLEASE HELP

TGANK YOU TGANK YOU

ROSIE

[Zerachiel]

Hi, I cannot help with the sedative questions but can offer advice on the Hyoscine Patches.Saliva can be controlled using drugs and/or botox injections to the saliva glands. I know of three drugs for saliva control:

Glycopyrronium which you can get in liquid form for administering by tube, this is probably the best solution for people with PSP

Atropine drops which you place under the tongue

Hyoscine, of which there are two types of Hyoscine patches (Hyoscine Hydrobromide or Scopolamine) and Hyoscine injections (Hyoscine Butylbromide)

DO NOT allow the use of the patches as it crosses the blood/brain barrier and can cause people with PSP to be impulsive and loose any regard for their safety, my wife would get up and fall over you would pick her up and she would do the same 2 minutes later which resulted in many injuries.

I will also paste below one of the warnings for Hyoscine injections, the reason is they may have a raised heart rate and PSP can cause constipation due to muscle control ...

" If you have any of these health problems: Chest pain, enlarged colon, glaucoma, a fast heartbeat, heart failure (weak heart), myasthenia gravis, stomach or bowel block or narrowing, or trouble passing urine"

[Bergenser]

Dear Tobias1234

As far as I understand, both the medications you mentioned might be totally unsuitable for someone with PSP.

My go-to reference is this article by James Rowe et al.

pn.bmj.com/content/21/5/376

Perhaps you can show it to your friend's doctor.

It also mentions the issues with hyoscine patches, like Zerachiel already explained.

Thank you for caring about your friend enough to learn about PSP 🌻

[Tobias1234 in reply to Bergenser]

THANK YOU Bergenser..thank you soooo much...my dearst special life long friend is advanced / end stage PSP...dependant on PEG hydration and feeding post recent A+ E admission+aspiration pneumonia, sepsis etc. I am at a loss as a specialist pall care senior nurse...years of expert good practise in excellent teams London..i now with no such PALLIATIVE COMMUNITY TEAM in Seville...My fear is oversedating/ " kosh" from amitriptylline 50 mgs started to stop 'cough' !! ( stopped cough reflex only so secretions ++ continue...) AND double dosing Olanzepine from 5 mgs to 10 mgs ..AT SAME TIME..both ..he then reported feeling ' VV not rite in head"..+ massive drowsiness+ fatigue since changes. I know instinctively he is oversedated ...and ' out of it '...with such 2 sedatory drug changes for PSP neurological deterioration...yes..you are rite..these 2 drugs should NOT be used for PSP...Amitriptylline ..and at v hi dose..causes patients to feel vv hortible side effects+ ill..it a VV old drug..described as a ' dirty ' drug as many side effects + long half life..causes toxicities...it is avoidrd by Pall Care Teams London...lt knockin out cough reflex by sedation..!! obvs then will stop cough reflex..secretions build up..suction needed..AND then can easily lead to aspiration pneumonia...caused by over sedation...with wrong medication choice.

I DEF am a VV best practise, case by case enthusiastic positive palliative care specialist...and see every case individual symptomology...you are so rite..PSP is V rare...advanced disease presents massive challenges...THO ..good pall care medication managemrnt IS POSSIBLE+THE KEY. AND I REALLY WANT TO LEARN AS MUCH AS POSS FROM U+ ALL ON THIS AWESOME WEBSITE...I encouraged urgent review ASAP next days..with local Dr....ESP re ' potential oversedation' and will send this article...I am hopeful to persuade stop Amitriptylline...AVOID Hyoscine patch..START glycoperronium liquid OR atropine for focused secretion management..and get team in to assess for better symptom management and best tracheal suction techniques ASAP.

Thank ypu most VVV sincerely for your time...PSP is so V V rare..and burden of neurological detrioration symptoms high+ shockingly hard to ' live with' THO I know with best pall care management...that is the game changer..however when none avail..it desperate onslaught..esp for the patient + famiky+ friends+ carers watchin on helpless...i will TRY TRY my VV best..THANK YOU +++

[PineEater]

Dear Tobias1234Sorry to learn of your friends condition. That would be helpful if you could please mention what for olanzapine been prescribed for your best friend? Olanzapine can interact with amitryiptaline but it depends on the individual. Further, amitriptyline is given for relief for many symptoms including secretion management and again the side effects depend upon the individual. If the side effects have lead to oversedation, doses can always be adjusted by the GP or the neurologist. Olanzapine can also interact with other secretion managing drugs likem atropine or hyoscine and other medicines of such type but again the interactions depend upon the individual. Please keep us posted on how things are moving on. Best wishes to you and your best friend. They rightly say a friend in need is a friend indeed. You are one of them. I salute you.

[SunriseLegend]

My husband's Parkinson's specialist nurse has recommended against any drug treatment to control secretions. She says in her experience of use in patients with CBD/PSP it has very unwanted side effects - affecting behaviour/emotions - which outweigh the benefits. He takes Carbocistene to help him brig up phlegm. We have a suction pump but generally i just clear any secretions using tissues