Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Research, drugs, treatment, new diagnosis

Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

Reply
 
Thread Tools Display Modes
Old 19-07-15, 12:44 AM   #11
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Olanzapine

Hi Guys & Dolls

I didn't realize Olanzapine can cause swallowing problems? Still worth giving a go given it's benefits behaviour wise?.....

But Jacqueline - it's the weekend so I am being naughty..."I thought you were a man"....well, honestly - straight, gay, Australian*, trans, living doll, ladyboy, ladybird[?] this is the 21st century - I think...ooh, no it's the millennium!! Maybe that's the same..I am clueless!!

* - any Ozzies on board, please do not take personal offence, my dream is to visit a little Joey hospital....this is just a line from a Brit sitcom "The Royles"
shiraz is offline   Reply With Quote
Old 19-07-15, 09:23 AM   #12
Cupcake
Approved Member
 
Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: Olanzapine

Hi Frankie
Hope you have had a good weekend with Chris. Sadly I think it will all be trial and error, and we all hope and believe that the pills are going to fix our loved ones and they go back to how they were.

I am always thinking there is a fix out there, but the reality, the HD is changing hubby very slowly, and what was not there before is now, as you know we have the added Myeloma now, which has really put a spanner in the works. It maybe Chris needs a change of anti depressant as the other one is not doing its job, and I can't understand why it is taking such a time to change to the suggested sertraline, it is one of those things were the professionals see you for a quick appt, dont really appreciate the full impact of 24/7 life with HD, and take their time. Hoping you both get some stability soon, I think it is going to take a good 3 weeks before you see any changes, I get down to the community psychiatrist and bother them until it is sorted, what worked well for me with our mental health team, was getting their email address, they did not like it, but every time I was worried I sent email, to start with they did not always reply, but when issues started arising, I said I have been telling you thinks are not good, and this refers to when he needed hospital admission, they can't be in denial of it, and now are a lot more responsive.
Xx

Much love x
Cupcake is offline   Reply With Quote
Old 20-07-15, 12:22 AM   #13
frankie
Approved Member
 
Join Date: Nov 2006
Posts: 544
Default Re: Olanzapine

Thank you for your advice, the chorea hasn't diminished and I've now read that Olanzapine can CAUSE movements in people who DON'T have HD.

You are all right , what works for one doesn't for another. So now I'm going to stop it again !

My poor brother won't know if he's coming or going.
Bless him , he doesn't know half the time what I am giving him , he's so trusting. But there again I don't know what I'm doing either.

It is such a worry , I honestly believed there would be treatments by now.


CC I've emailed the HD specialist again and he hasn't replied yet .
The community psychiatrist should be back in work tomorrow so I will give them a ring. They don't think about the families having to actually LIVE with all this sadness and upset with our loved ones and the effect these drug changes have.

I am so sad and very sorry for you and M and what you're all going through. I haven't caught up with posts yet so not sure how M is doing with treatment. Thinking of you.
Take care love xxx


Shiraz , Jacqueline is so cheeky , she knows very well I'm a bloke with a thing for Frank Sinatra. xxx
frankie is offline   Reply With Quote
Old 04-07-18, 05:17 PM   #14
Patrick
Approved Member
 
Join Date: Jul 2008
Location: Essex
Posts: 220
Default Re: Olanzapine

Hi All,

I was prescribed this 2 weeks ago, for my movement.

I tried is on a friday night , just 2.5mg, I was totally zonked out the next day.. I felt like a zombie.. I stopped immediately as I had to drive on Sunday (and work Mon-Friday)..

How long does the zombie effect take to get over?
am thinkin of trying it the next time I have a week booked off work bu I really dont fancy feeling like that for a whole..

Also, does the feeling totally go away or is it just a case of getting used to it?

Thanks

Pat
Patrick is offline   Reply With Quote
Old 05-07-18, 01:20 AM   #15
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,148
Default Re: Olanzapine

.
Hi Pat

The answer is - does anyone know? If you take the time to scroll through the list below and look at the websites it’s apparent that medications prescribed for people with HD are often given in trial and error scenarios. My son was put through a variety of prescribed medication by both Neurologist and GP. He is now on a minimal dose of Clonazepam which, say his Care Team, seems fine for him at this time.

Rather than be prescribed a cocktail of (inconclusive) medication we have successfully tried natural calming\relaxation remedies such as:

• Cannabidiol capsules,
• Lion’s Mane Mushroom capsules,
• Ashwagandha capsules
• Cannabidiol oil (only stopped because of possible weight reduction)

Olanzapine, though, is an antipsychotic medication used to treat schizophrenia and bipolar disorder. It rebalances dopamine and serotonin to improve thinking, mood, and behaviour.

www.drugs.com/search.php?searchterm=Olanzapine

The following are benzodiazepines, some of which are prescribed for HD symptoms:

Alprazolam (Xanax)
Clobazam (Onfi)
Clonazepam (Klonopin)
Clorazepate (Tranxene)
Chlordiazepoxide (Librium)
Diazepam (Valium)
Estazolam
Lorazepam (Ativan)
Oxazepam (Serax)
Temazepam (Restoril)
Triazolam (Halcion)
Rohypnol (Flunitrazepam)

Benzodiazepines work by literally slowing down the functioning of the brain.

They do this by enhancing the actions of a particular chemical in the brain called GABA which is a very important part of our brain’s natural sedating mechanism - it sends messages from brain cell to brain cell telling them to slow down or stop firing completely. Normally, it is released in times of high stress and acts as a leveller, allowing us to continue what we are doing without being overcome by anxiety. But when GABA levels are artificially increased by Benzodiazepines, it can lead to a number of effects, from slurring words to total blackouts.

www.ukat.co.uk/benzodiazepines

www.medicinenet.com/#formulations_of_benzodiazepines

Some time ago Trish did a valiant job in gathering together all medications mentioned in posts on this Message Board and I’m sure she won’t mind me regurgitating them here for your perusal:

Name/Trade name

1. ACR16
2. Alimemazine
3. Amitriptyline
4. Baclofen
5. Botox
6. Carbamazepine (Tegretol)
7. Cipramil
8. Citalopram (Citilipram)
9. Clonazepam (Klonopin)
10. Clozapine (Clozaril)
11. Diazepam (Valium)
12. Dimebon (now not prescribed having failed to prove effectiveness)
13. Dolmatil Sulpride
14. Epilim (Valproic acid)
15. Efexor XL
16. Fluoxetine (Sarafem)
17. Haloperidol (HALDOL)
18. Hydrocine tablets/patches (Scopoderm TTS)
19. Lexapro
20. Lithium (Eskalith)
21. Lithobid
22. Lorazepam
23. Memantine
24. Mirtazapine
25. Nortriptyline (Aventyl)
26. Pamelor
27. Movical (for constipation)
28. Olanzapine (Zyprexa)
29. Pregabalin (Lyrica)
30. Prochlorperazine
31. PROTHIADEN
32. Prozac
33. Quetiapine (Seroquel)
34. Risperdone (RISPERDAL)
35. Sulpiride
36. Temazepam
37. *TetraBenazine
38. Trazadone
39. Trihexyphenidyl
40. Valium
41. Valproate
42. Venlafaxine
43. Zispin
44. Zoloft sertraline
45. Zopicione
46. Zuclopenthixol

Trish: It highlights how complex the disease is and how much scope there is for reaction and side effects. When you consider that the people taking them (may) have limited communication to explain side effects and people may be on several of these drugs at the same time in some circumstances …

*Recently introduced Deutetrabenazine seems to be slowly replacing Tetrabenazine in the USA – but it’s not available in the UK.

www.drugs.com/cdi/tetrabenazine.html

I hope you get your situation sorted soon.

Best wishes …

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 05-07-18, 07:14 AM   #16
Patrick
Approved Member
 
Join Date: Jul 2008
Location: Essex
Posts: 220
Default Re: Olanzapine

Thanks Allan for your detailed response.
I think i'll stay off it for now..

Its interesting you mentioned Cannaboid oil, a friend sent me a link last week for it.. other than loosing weight did it help in any way?

Pat
Patrick is offline   Reply With Quote
Old 05-07-18, 11:14 AM   #17
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,148
Default Re: Olanzapine

.
Hi Pat

He was only on the Cannabidiol oil for a few days so we couldn't guarantee anything either way. However, many people with HD (and other neurodegenerative diseases), globally, are now taking 3 drops twice a day under the tongue - and it works.

It is legal and available online. It has had the illegal THC compound (which gives the cannabis\marijuana highs) removed - and has a calming effect on anxiety and physical issues such as peripheral neuropathy. I know this for a fact because I have taken on the remainder of my son's Cannabidiol. It can, at first, seem to be expensive - but at 6 drops a day it's ok.

The young boys in the news recently have been taking Cannabis oil to help with their multiple epileptic seizures - and it certainly helps them. This Cannabis oil, though, has a small amount of THC and is, therefore, illegal.

Many of the prescribed medications for HD movement issues are initially for epileptic seizures and similar. So you do have to be very careful.

Have a good day ...

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 05-07-18, 11:19 AM   #18
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,391
Default Re: Olanzapine

Quote:
Originally Posted by Patrick View Post

Its interesting you mentioned Cannaboid oil, a friend sent me a link last week for it.. other than loosing weight did it help in any way?

Pat
Hi Patrick

I can't answer your original Q about whether the side effects you experienced would subside with time. Steve was only ever on tetrabenazine. However, if you can get hold of a copy of the HDA's 'A Physician's Guide to the Management of Huntington's Disease' (I have the updated 2009 version by Dr Tabrizi; Dr Barker; Proff Rosser; Dr Quarrell and Sue Smith but there may be a later one) it places Olanzapine at the top of the Table on Meds to suppress chorea.

Adverse affects are listed as 'Sedation, parkinsonism, akathisia, raised triglycerides, weight gain from increased appetite.' It also states 'Caution should be exercised in patients with diabetes and blood glucose monitored.'

Starting dose is stated as 2.5mgs at night

Maximum dose is given as 15-20mgs per day

If I were you, I would list your side effects and contact your specialist or whoever prescribed them and ask them if they have a view as to whether they are concerning or a natural initial response which would subside after titration into the system stabilises rather than just stop taking straight away.

As you know, I was a great one for using the alternatives on Steve (remember the exchanges in here on creatine?) but I was always aware I needed to get Steve's GPs and Neurologists (Dr Weeks at Kings) on-side to enable blood tests and other checks where any introduction of alternative therapy needed to be monitored for adverse affects just as much as the prescribed ones. That includes the interaction/contradiction in mixing drugs and alternatives together. Not just in terms on physiological reaction. On the creatine side I mentioned at one stage there was a trial going on for new HD drugs or something. As part of the checklist for suitable volunteers they actually stated the person should not be already on any supplements such as creatine as this would skew the results. By that token people will have been sadly excluded.
__________________
I tried.
Trish is offline   Reply With Quote
Old 05-07-18, 04:27 PM   #19
Patrick
Approved Member
 
Join Date: Jul 2008
Location: Essex
Posts: 220
Default Re: Olanzapine

Thanx guys for ur input. :)
Patrick is offline   Reply With Quote
Old 10-07-18, 08:50 AM   #20
Amanda Stansfield
Approved Member
 
Amanda Stansfield's Avatar
 
Join Date: Nov 2006
Location: Pendle Lancashire
Posts: 247
Default Re: Olanzapine

Quote:
Originally Posted by frankie View Post
Hi to old friends and new.

I need some expert advice. My sibling has been on Citalopram for 3 years now.
Depression and mood had been manageable. There was a dramatic change 2 months ago in both mood and depression . He said he felt as though he was overflowing with sadness and anxiety. I automatically thought we could increase the Citalopram , but GP said we can't go above 40mg now.

A few months ago he'd been prescribed Olanzapine by the community psychiatrist who he see's for "depression ", to help him sleep.
I was shocked when I read it was an antipsychotic and decided not to give it him as he has no psychiatric problems and is astute and bright as a button.

With this sudden change in mood I looked into the Olanzapine again and had advice from a RCA who said the side effects were good for HD, the increase in appetite being one.

I decided it was worth trying as he was getting lower and more depressed . He started a low dose of 2.5 and initially I was pleased as he was definitely hungry (which was unusual and a joy to see ) but it was short lived. He has been having more falls and mood is as low as ever. I read more into the drug and if it is going to work the anxiety and depression go in days and this hasn't happened.

I feel I need to get him off it asap and try something else.
Does anyone know if we have to withdraw slowly if it has only been 2.5 for just over a week and can you suggest anything else worth trying to lift this depression ?

I have to suggest things to the GP or community psychiatrist as he won't see anyone connected with "that thing " HD.

Thank you in advance.
From one heartbroken sister. xx
hi sweetie

there are many different antipsychotics and antidepressants out there and its dam hard finding the right combination for each person. Mt brother is on 40mg citalopram and 20mg olanzapine and its been the best combination for him.
Now he is in the final stages and sleeps more than ever but he appears comfortable and content with very little movements anymore.
At first the medications made him sleepy but with time he became more animated again.
The thing with medications they can take quite a few weeks to make a difference and your hubby is only on a small dose.
Contact your hubbys HD consultant he/she should be the one prescribing for you x I hope this helps a little. I'll be thinking of you.



" life isn't about waiting for the storm to pass, its about learning how to dance in the rain "
Amanda Stansfield is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 08:37 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA