DOPAMINE AGONISTS - Should people be warned about possible dangerous side effects?


#1
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This thread continues the discussion about the negative side effects of dopamine agonist medication (DAs), particularly those relating to Obsessive/Compulsive Disorders (OCDs), and whether or not those being prescribed such drugs should be warned about these side effects before they start taking them.

It is now generally accepted that 1 in 7 PD patients prescribed DAs will be affected by OCDs "to some degree". Many also believe that if we were to take into account patients who choose not to admit to such effects, this figure is more likely to be around 1 in 5. Nonetheless that still leaves the vast majority (80%) unaffected. Should EVERYONE be warned, or - in order not to frighten or upset that majority - should the risks be kept quiet? All opinions welcome. Do NOT continue to read this thread if it is likely to unsettle you.

Ray.

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#2
Hi, I was reading an article about requip modutab - see below - which is what X was changed onto. And am a bit confused? am I right from my understanding of below that when people are taking the 3 a day their body only really absorbes about 8.9mg per day, whereas with the one a day slow release they're getting a full dose of 18.6 a day ??? I'm asking because when X was on 3 a day he only ever remembered the morning tablet - so does this mean he's gone from what would effectively be about 3mg(8.9 divided by 3) to 18.6mg???? Or have I got it totally wrong???

Therefore the most clinically appropriate treatment dose can be reached more rapidly and simply than with ropinirole 3x daily. Whilst patients were able to reach higher doses with Requip-Modutab (mean dose of 18.6mg/day versus 8.9mg/day with ropinirole 3x daily), both treatment formulations were generally well tolerated

I think I've copied this three times now - post keeps moving - stay in one place until I get an answer :grin:

#3
Sorry Amy, all settled now.

I've asked the Mod to close off the other thread properly.

Ray

xxx

#4
Thanks Ray, but at least I've had plenty of practicing copying and pasting :grin:

What about my question though? Have I got it right? Or have I lost plot? Your usually fairly techy on these things ?????

Amy

#5
Hi Amy. I've responded to your question in the other thread. Ray.

#6
Ray!!!!!

Im dancin' round this forum like I'm demented. I ve just left the other thread, hoping to catch up on this thread......where are we!!!!!
Glenchass

#7
By the time I finish dancing round I won't have any energy for discussing anything - I'll need a rest!

#8
Hi

NO, I don't see the point of warning peoople.

When the person is suffering the side effects they are unable to do anything about it - so what's the point of warning them in advance of something they will have no control over. I'm not talking about slight effects here - I'm talking all the way sucked in when you lose your house/family/life. You don't realise it's happening, or if you do you don't want help or can't ask for it, so how will knowing in advance help?

Unless it's so you can say, yes you were right I did lose everything!

Amy

#9
Everyone seems confused about threads now.

It's straightforward really.

This thread is about the negative effects of DAs, and whether patients and/or carers & loved ones should be warned about them in advance. Also, for those who've slipped through the net and are already taking DAs and experiencing OCDs without having been warned, how to get them off these drugs - sometimes against their will.

The thread was originally closed by the moderator because it was upsetting some people, so tread carefully please. It then re-opened itself in the "About The Forum" section after a number of posters objected to censorship. This was good, but the thread was now in the wrong place, so here we are again!

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#10
Hi those who know my story.

I'm meeting him at 8.30 - I'm demented waiting for time to go - and checking phone every few minutes waiting for text to say he's cancelling.

And I was thinking maybe I'm wrong, maybe there's nothing wrong with him, he said he's fine and he's not having side effects to the medication, that he's the happiest he's ever been. Maybe he just likes golf? Maybe, maybe, maybe...

I know I'm not imagining it - but when I sit opposite him and he tells me that I am imagining it it's going to be so hard to fight him!

Amy

#11
Just waiting for the right time to jump in....... maybe later :wink:

#12
I was warned about da`s so much so that the neuro wouldn't prescribe them to me because Im a single parent and quite impulsive anyway.
Im a little concerned by a lot of very personal postings on here, to the point of not feeling comfortable reading about some ones relationship, especially when the person concerned has PD and we are getting one side of the story.
If I found out my partner was posting stuff about me I would go ballistic.
I know its anonymous, but this can be googled anywhere.
Jax

#13
We're behind you Amy.

We all know he's obsessive, manipulative and fooling only himself.

Don't forget how he harrasses you, and how secretive he is.

This is NOT normal behaviour.

Ray.

#14
Ray and Amy

Its really enlightening reading what you both have and are going through.

Would i be able to contact my doctors and give my permission for my partner to discuss my medication if i go the way you both have said. Id rather put things in place just in case.

Thanks Mark

#15
Hi Mark.

I think all doctors want a patient's permission before they change his/her medication.

If the patient wants to share/delegate this decision making responsibility with/to a carer or loved one I'd expect the doctor to require something in writing to cover him/herself, signed by all 3 of you, to keep in your file.

Ray.

#16
Hi All

I've given up - I couldn't get any sense out of him, he says he's fine and is not suffering from side effects - he doesn't love me, he has a new woman he loves but he wants sex with me, he fancies me, one minute he changed his meds, the next he didn't, one minute he went to his last appointment, the next he didn't, who will ever know the true story - I doubt even he does anymore to be honest!

There's no point trying any further, the old X has gone. He's managing fine, he's playing golf, 3 X 18 holes the other day!!! Is that some sort of record?? He's looking after himself, although he doesn't look quite as good as he did before, he's only a shell now there's no inside. He's in his own little world - but he'll survive - although I don't know why anyone would want to live like this - but thats his decision. He's texting me now to come back because he wants to have sex with me - and says if I don't we're finished !!!! Now he wants to meet tomorrow instead.............

Mark, just bring your wife to the next appointment and tell the doctor that if the shit hits the fan they are to listen to your wife, she's not going to go to them to get your meds changed unless she see's a need!!!! She wants to see you happy and healthy - that's all any of us want at the end of the day. The chances of what happened to X (and others) happening to you is very slim - but no harm in having it covered just incase!

Thank you to everyone for your help and insight into something I had no idea existed until I had experience of it myself - and I must admit - that I would never have believed existed unless I had experienced it myself.

I hope things work out well for everyone in the future.

Take care everyone x

#17
Hi,
The subject is back,rightly so.Agree to the warning to those who may be unsettled if things get deep.The fact is though that this is a very popular and relevant topic.
When discussing the negative side of DA'S especially concerning OCD'S,how far should a neurologist go.Well,both patient and carer should definitely be warned.Should this involve for instance an hour long discussion to petrify them into declining the treatment,i don't think so.The negatives should be weighed with the positives so a balance is available in order to agree to the correct treatment.Anything beyond this can be gained from both the leaflet with the meds or sites such as this.
From a personal point of view,i reveiled to the neurologist the fact that i gamble on the horse racing when the OCD subject was mentioned.I assume i'm in a higher risk group.Does this mean i shoulden't have been given the meds i'm on.I wasen't given a massive list of potential problems.I just feel myself and my wife just need to be observant.With too much emphasis on the negatives some could become paranoid worrying about them to the extent of stopping their medication prematurely.
I would be extemely surprised if Neurologists throughout the county don't visit this site,taking on board all that is said.With a view to helping them move forward in identifying problems where Dopamine Agonists are concerned.They are caught in a situation of dispensing a drug which could potentially drastically transform a persons life for the good.They have to give a realistic,balanced view.Why wreck a potential lifesaver by putting people off treatment when statistics show a large percentage of success,lets face it the alternatives aren't numerous.
All the best
Titan

#18
AMY:

Well done, I truly hope you can now close this chapter of your life.

To be honest though, I can't see him disappearing that easily.

Don't forget that if his pestering continues you still have the legal "harrassment" option. Now THAT might knock him out of his trance!

Ray x

#19
Ah Ray

How can you be so heartless - he really is a lovely man without medication - and it's really unfair what the medical profession have done to him - and can get away with doing, I know I can't make my situation any better but I still think what is going on is wrong and someone needs to do something about it.

I don't need to go along the line of legal harrassment, I can deal with the situation myself, I just didn't want to have to, as that means having to be cruel to someone I love/loved - it's a very hard situation Ray, you were on the other side, I think to watch from my side is worse, you were in your own world 'enjoying' the 'benefits' at the time - I'm not, I'm in the real world watching what the medical profession has decided is a suitable life for someone else to live - which isn't. He said to me 'I have parkinsons maybe this is the best it gets' - I know it's not, but I can't convince him.

I wish that what happened to me doesn't happen to anyone else, but I know it will - because people won't belive this can happen, so they won't put safeguards in place, they just say, oh my wife is watching me incase I gamble - but that's the easy part - we survived the gambling!!! But they will stand infront of you and say I DON'T LOVE YOU ANYMORE - and you will believe them - and by the time you realise it's the medication talking and not them - they will be gone so far you can't get them back.

Anyway, that's life.

Amy

#20
Amy,

I’m sorry, but I thought you WANTED him to stop hassling you, unless he made some kind of proper commitment? I thought you couldn't take the current situation any longer, and wanted some way of forcing him to make a decision - one way or the other?

I merely suggested a couple of ways of achieving what you said YOU wanted, in order to HELP you get X back on track. I was NOT being cruel. Surely you know me better than that by now. You asked me for my advice based on my experiences and I gave this in good faith.

I'm also surprised to see you (of all people) suggesting that when I was on DAs and suffering from OCDs I was "enjoying all the benefits" of that situation. Oh yes, sure, it was a real hoot: I couldn't stop laughing. Exactly which of the following examples do you think I found the most enjoyable?:

- Not having my son speak to me since he was 14 (he’s 21 now).
- Losing £400,000 at gambling, etc.
- Losing my house, job, career and pension.
- Being stopped by police from committing suicide twice: Sussex/Humber.
- Spending time in a psychiatric observation ward.
- Being locked in a police cell and charged with fraud.
- Finding myself 40 miles from home at 3am, not knowing how I got there.
- Finding myself in a remote country church at midnight, crying.
- Walking down the street naked, discarding my clothes as I strode along.
- Driving 50 miles at night wearing only a bra and panties.
- Walking round indoors at home in nighties, stockings and suspenders.
- Getting caught visiting brothels.
- Attending the STD clinic.
- Hitting people at random.
- Throwing plates of dinner across the room to smash against the wall.
- Up-ending a large pot of hot stew over my wife’s head.
- Throwing PCs and TVs out of upstairs windows.
- Seeing pterodactyls creeping out of the walls.
- Seeing thousands of insects crawling all over the bed.
- Believing my family was trying to poison me.
- Calling 999 many times, claiming I was under attack.
- Regularly stealing money from my wife’s handbag and bank.
- Kicking down doors and smashing windows.

Answers on a postcard ........................

Ray.

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