Apomorphine withdrawal

About Parkinson's and health Treatments and therapies
1

Hi,

If anyone can relate to my situation, and offer any kind of advice, I would be eternally grateful.

To cut a painfully long story short, I was diagnosed 10 yrs ago at 40.

The last 12 months have seen a rapid decline in the condition such that I have gone from being able to walk, drive, work and socialise, to now not even being able to balance standing up.

I was on a regime of Pramipexole, Sinamet, and Apomorphine pump. The Pramipexole turned me into a psychotic gambler. I came off that, awful withdrawal symptoms, but better than the alternative, nearly lost my home, marriage, everything.

Just after I quit the Pramipexole, my legs started to shake, couldn't sleep at night, mad sweats, and a completely lethargic loss of interest in most everything I had previously enthused about. My legs have got steadily worse, and my movement became dyskinetic to put it mildly, I looked like a thunderbird puppet. I developed a ringing in my ears, and an intense dizziness that has got worse and worse.

I have seen 2 neuro's during the past 6 months to try to establish some control. I came off the Sinamet, that being the most likely cause, but this made things worse, I just seized up. 

Plan B is now to quit the Apomorphine and up the Sinamet to 250 x3 daily. We have reintroduced a small dose of Pramipexole to try to balance things out, but to my disappointment this has produced no significant improvement (.26 morning & evening). No OCD at that dose.

It seems the Apo no longer suits. This has been explained as my having reached the complex stage of Pd, where my brain reacts differently now to previously successful drugs. I get up in the morning, and within 20 mins I am rattling like a heroin addict. Sweating, can't talk, shaking, shivering, hot then cold, disorientated and confused, panicky and very anxious. I put the pump on and swap one set of symptoms for another. I calm down and can think clearly, but then feel tremendously dizzy (not blood pressure) and my legs go haywire, I cannot stand up.

I have taken the pump down from 0.9 12 months ago, to just 0.2 now, steadily decreasing the dose week after week. The withdrawal however is the worst I have ever experienced. The desperation for the drug in the morning is tremendous. I need to quit it to see if this eventually regains some of my balance and stops the dizziness. 

It's kind of being damned if you do and damned if you don't (take the Apo).

Has anyone else tried to quit Apo?? Does anybody have any advice on kicking the last bit and coping with the intense withdrawal symptoms? If anybody can share this experience with me I would be most grateful.

Thanks all.

Chris

2

Yes my husband has been up and down with Apomorphine and is at present reducing his dose to come off it .However he has started to get very shaky and stiff again and sleeps most of the day .When the pump was at its highest level he was completely disorientated and confused and suffered with a lot of hallucinations so you are right there doesn't seem to be any benefits .Seeing his neurologist so let you know what he suggests next . 

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I’m getting the feeling that soon I will be going down this slippery slope.  That is, swapping one seemingly useless drug for another with added unpleasant, side effects. It has been suggested that I start the ap-go pen on top of stalevo, ropinirole and madopar. Something is stopping me doing this because I’m not convinced it is right for me. Whenever I ask about ap-go pen or the apomorphine pump, I feel a giant ‘BUT’ hanging in the air!

4

Hi Chris,

I recognise your frustration and disappointment with the solutions the professionals come up with as these only seem to aggravate your condition.

I have felt the same a few times in the last years., but in the end I thought there must be a more subtle solution, than just adding a different drug to the list.  Maybe a slow re-introduction  of lower doses or different combinations .or change of timing (several small amounts works best for me,, taken every two to two and a halve  hours. If you  I have seen it with other patients. Sometimes it just requires a change of consultant. They all have their favourite treatment. You have to get them on your side and maybe go back on drugs that worked  Do you have access to a Parkinson nurse, do you go to a support Group?

1 Like
5

My husband has now come off the Apomorphine pump and he is far more engaged in conversations and less confused . The downside is the off times are more frequent and shaking is worse He is now having a trial for the Duodopa pump treatment which will involve surgery and this seems the last resort for a better quality of life .I would like to hear from anyone who has had this operation and if the system has been successful for them and manageable . 

6

My partner has been on apo go pens for over 10 years. He’s also on the pump. We recently saw a different professor on our recent visit to the hospital. As a result my partner has been taken off the apo go pens and has literally gone cold turkey this last week with only the pump which is on a low does all week. In my opinion apo go is very addictive. His anxiety is now through the roof and he’s struggling to sleep. We have madopar dispersable now as our rescue but it’s hard for someone who is panicking to take it.
We too have been offered a duadopa pump. At this point we have said no as I think it’s a bit of a last resort.
Always ask for a fresh set of eyes too look at your parkinsons. We did and as a result he’s taking less medication. I know the anxiety is bad but it will level out in a few weeks. Also look for alternative ways. My partner juices and blends and this really helps.

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Hi,
I was recommended for the Apgo morphine pen as first lockdown started so had to wait a four months before having an assessment at the hospital worth my Apgo specialist nurse and my PK specialist nurse.
Kate was and is still brilliant, although she’s not doing the job now we have remained good friends. She was my only contact health wise with anyone from the nhs during the pandemic.
She also gave sound advice which I have followed.
I was diagnosed ten years ago and three years ago had my first freeze….hence recommended for ago. The first couple of years I used a couple of times a day when I felt I needed it.
My dose is 3 mg a jab up to 5 times a day. I now use it about 3 to 5 times a day but I control my usage.
I always have the pen set at 3mg ready to go and vary the injection point. I’ve only had one infection…my fault I forgot to put a new needle in after use. I also rub sudocreme over my abdomen as this clears slight bruises and prevents infection.
I am still on 3mg and injecting myself. I usually have a jab 45 minutes before my next meds and my days vary as to how many I have.
Intake requip XL x2 with a sastravie at 8am and a sastravie at 11am/2pm/5pm and 8pm. At 10pm I take a sinemet cr25 and to stop singing, laughing, shouting or scaring the bejesus out of my hubby Clonazepam
which calms the brain (this has been fab).
I have tried madopar but this was awful.
I hadn’t considered what happens with increasing the dose and having to come off it…or what could replace it if there is a replacement.
I don’t know if the type of meds people are on affects the effectiveness of the Apgo pen, I am aware I can go onto a pump eventually but I am resisting change for as long as I can.
Thank you for highlighting the situation you find yourself in, I wish you much luck with alternatives that work for you.
Maybe my experience or the way I use me Apgo will be of some help. I will pursue the long term effects and what is after Apgo now though.
Thank you and best of luck.
XxxTrudi

8

Dear Chris and other respondents

I believe I might have developed DAWS after sudden withdrawal from apomorphine last year around July 2022. This was just prior to DBS surgery in October 2022. (Long story). But it might have also started with too quick withdrawal from Sifrol back in February 2022.

I’ve suffered from the same classic set of symptoms, except they’ve changed over time. The initial panic attacks have gone and now it’s more chronic fatigue, apathy, depression and very recently - suicidality. Only one health professional (a nurse) in the service I’m with has mentioned DAWS. The doctors don’t seem to recognise it as real. Even if the next neurologist does recognise it, it’s 2 months until my next appointment.

But I’m suicidal now and these DAWS symptoms are refractory to all other medications that have been tried, just like the literature says they are.

Anyway I’ve read that returning to a very small dose of the agonist can help with recovery. Has anyone tried this?? Did it help?? I can add more detail if needed to discuss properly.

9

Hi pennyfay,
It’s been 6 years since my original post about Apomorphine and DAWS.
I can concur that I would probably rather kick a heroine habit than quit Apo. It was quite simply the hardest thing I have ever done. My DAWS symptoms lasted me about 2 years. Confusion, apathy, dizziness, nervous panic, ringing in my ears…I had taken to crazy gambling while on apo and blamed it, as did my apo nurse, on pramipexole. Well I went back on pramipexole after I came off the apo, and the compulsive urges stopped. Apo brought on the compulsive urges. It really was a tough fight, and I sympathise greatly. Unfortunately I have no experience of DBS, will your consultant consider a dose of pramipexole whilst using DBS??
I thought the DAWS would never subside, but it did eventually. Hang on in there. Many many times I have thought living is futile, with my pd worsening. I take a small dose of sertraline, an anti depressant. Have you considered any such treatment? They don’t make me ‘happy’, but they do stop me from worrying. Your message deeply concerns me, your considering suicide. Talk to others on here. Talk to your doctor. Talk to the pd helpline on here, but stay in touch with as many people as you can.
Speak soon,
Chris