New study on dangers of dopamine agonists


#1

https://www.michaeljfox.org/foundation/news-detail.php?new-study-urges-stronger-warning-for-parkinson-medications-tied-to-impulsive-behaviors&utm_source=social&utm_medium=facebook&utm_content=researchnews&utm_campaign=meds-warning-need&s_src=meds-warning-need&s_subsrc=facebook

very interesting report on the dangers of dopamine agonists


#2

HI Shelly

Can you summarise what it says as I'm already pissed off with looking at websites about The Big P!

Please don't go to any trouble - a one word review will be fine! ie, Good/bad/very bad.

Lloyd


#3

Good

Just to summarise that point

The medical profession are finally realising the dangers of Dopamine agonists


#4

 

I must be one of the few where these dopamine agonistics i.e. ropinirole that I take, hasn't made any effect on me, they suit me quite well.

 Watch this space on any future developments!

 

Sheffy


#5

i am going to as to finish with DAs. they are poison.


#6

I am taking pramapexal even and have no troubles at all in fact finding them really good  but thanks for the information x


#7

It's good to keep up the warnings about DAs I'm on requip xl and find it fantastic but my oh keeps a close eye on every thing I do and on our bank account with the power to stop my access if she needs to, I've had no probs so far and for me the benefits have been outstanding as its enabled me to return to work full time and live a fairly normal life. 

Live well. Cc


#8

Sound advice  Cheshire Cat hubby also keeps a check on me consultant told us what to look out for  but as you say. It's good to keep up the warnings glad your doing well on them take care x


#9

Hi all

Its quite a contrast really I was on dopamine agonists for about 3 months they were awful to take and caused me a lot of stomach upset and also I did not find them very effective. I am on 4 madopar a day now and my symptoms have improved

With regards to employment I have just been ill retired by my employee from the word go since I was diagnosed they have been pushing me towards the door marked exit  oh you will be safer at home sort of talk. Its a good job I am 50 any earlier than this would have been  really depressing But you mention the words Parkinson's to my employer and there imagination went in to over drive and this was one condition they not prepared to support me in prefering the Ill health retirement route out of sight out of mind.

I was wondering if I could still take them to a tribunal despite being pensioned off any thoughts........Paul

 


#10

Hi Stormforce,

I would ring the helpline if I were you and speak to someone who knows about employment law and disability.

It sounds very wrong to not offer you reasonable adjustment of your role to allow for problems caused by your disability.

Going back to Shelley 65s original post, I was pleased to see that at last warnings have been issued about the scale of the DA problem.

I had understood that in Bradford there was a ban on prescribing more than 18 mg of Requip XL.

Suma tells me that it is not a ban but a warning to prescribe more than this with caution.

This has resulted in far safer prescribing than the hung-ho attitude in Leeds resulting in huge overdoses and one neuro boasting he had patients on 50 mg!

My husband's plight is the result of 36 mgs for years and pressure to go up to 40!

I think PDUK should ensure the recent warning based on research carried out recently is publicised and all authorities urged to recommend caution in prescribing, particularly in approaching the licensed maximum of 24 mgs.

Enough lives have been ruined and it is time PDUK made a stand.

Good luck, Stirmforce and thank you Shelley for highlighting the Michael Fox attempt to get the truth out there.

GG


#11

good on bradford my old drug-dealer. I was up to 24mg and seriously planning an expedition to an S and M dominatrix in Halifax. 'Halifax' I hear you all cry in horror!!!  

gg - 40mg is unbelievable! criminally negligent.

 


#12

Not criminally negligent according to a wide range of legal firms I approached!

A doctor can prescribe off license as long as they warn of any possible side effects.....my husband's computerised notes say "appropriate warnings given" after every appt despite no such warnings being given!

Therefore no action can be taken.

And GlaxoSmithKline fined millions of dollars in China for bribing doctors to prescribe their drugs.

I have lost all faith in those who are supposed to be helping us.

GG


#13

Yeah dopamine agonists is not good for you at all.sad


#14

I have had Parkinsons for 10 years and started taking requip fairly early on. Although it made me very sick it did not help much. However I am now on Pramipexole controlled release as well as Stalevo and Madopar.CR.

So  far (3 years) on I am much better for taking it and no nasty side effects so far.


#15

Is there an alternative to taking DAs?


#16

my personal belief, which i think the neuros are slowly heading towards, is everyone should go straight onto levodopa. DAs are safe for some people but there is no way of telling which people. People think they are safe because they are being watched but they are not.

the benefit of delaying dyskinesia is not worth the risk of financial and personal loss. I think I have recently lost $10,000 because of it. However the world has benefited enormously from my poetry, prose and music wink 


#17

Hi Turnip

I would agree with that but the neuros seem reluctant to give out levadopa for the first few years as it has a limited window of effectiveness. THat's what I was toldf anyway and as the years pass this does seem to be the case. I have to keep taking more and more to be able to function. It helps the parky but can't be helping my general health.indecision


#18

Of course, the only general thing we can say is we ca't generalise. I've done 2.5 yrs on DAs, but have just started levodopa. Amazing drug! I mean, who knew??? Even on just 12.5/50mg It made me realise just how rubbish I'd become in the last six months or so. Only problem is . . . my head feels like someone's replaced my brain with candy floss and stuck a Kenwood Chef in there. With dough beaters. On max. What's the point of having a swinging arm, say I, if you can't stand upright.

Semele


#19

Dear Semele

never had any problem with LD, if anything it clears my thinking. Funny thing brains.


#20

Hi all

Iv not been dx long and was on siminet at first it helped my physical symptoms but not my cognitive ones.

Was put on requip xl n am now fully switched on and able to function like a human being again I'm only on 14 mg  so I'll no doubt have to take more later but for now I'm lucky and thay work well for me.

we are all different and react differently to meds so don't dismisses anything as you might miss the one thing that works, all drugs have side effects some worse than others we now know what DAs can do to some pwp but to others like myself thay are a lifeline to a normal life 

i feel sorry for thoughs who have had an awful time on them and hope things get better in the end 

Take care   Cc