Hi

As Liz mentioned in her recent post, we are having to limit the number of posts in each thread to 500 in order to ensure that the forum is able to keep running. The thread "Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders" is over this limit so I have closed that thread and moved all posts made this year into this new thread. No posts have been lost.

Tim

NB: The previous thread can be found here: http://bit.ly/zFzYVF
-Ezinda

could anyone tell me when u been on mirapexon meds at all,the actual amount and the strengh that it has caused bad effects on you.the reson im askin this is cus last year i was on 6 of them and they got to me in a bad way,im on 3 at the mo,but still have a small effect goin on ,not the same as before ,but neither the less there effectin me.me neuro says that added stress levels can actually play a role in all of this,not just the meds consernd.has anyone else found simular to me,and wot the neuro says also?

hiya sunray,ep that is the same drug im speakin aboutyou did the rite thing for your hubby at the time wot you thought was rite,you no him beter than anyoneifelt me self it was haelpin me pd,but the effects was the prob,my neuro says there nothin he can put me on at the mo till she had a chat with another neuro up at brummy,cus of all the other meds im on.to me it simple they look it up and do it,but she said the other drugs react to the drugs im on ,and it not that simple.so im stook as iam for now,till i here from her agin and to be honest there not the fastest of people are they ,if i was goin to do big harm to me self,or others that different,but doin wot im doin ,i have to get on with it for time bein,crazy eh,but to me it is doin me harmagin with me like ur hubby if i ween me self off them and have just levodopa ,pd then struggles,its a waitin game

goldern girl,i read ur post 2 times,and had tears in me eyes,feelin for u and ur hubby.these drugs dont half have some thin to asnwer for.but iam so pleased he has come out the other end and he has yourself there for himim on sinemet as well as the mirpexon,u say ur hubby was on sinemet and madapar,im wonderin if this is one of the drugs,madapar which is bein questioned with the other drugs im on.end of the day i just wonna feel beter with in me self,pd wise.but i no there alot of us out there who wishin for this alsogg u and hubby keep strong too

Thanks Ali for your good wishes.
Madopar is a levadopa drug very like Sinemet.
It is not a DA.
The reason my husband takes it is because it can be prescribed as a dispersible tablet which gets into the system when food is in your stomach and Sinemet just lies there and doesn't work.
It makes life a lot easier after a big meal when initially he found he couldn't move for 2 hours until the next dose.
Hope that helps!
He has been offered an Apo pen for when all else fails and he is frozen but after the horrors of the DA OCDs he daren't use a DA based pen.
Has anyone tried it after coming off DAs and not had the OCD starting again?
X
GG

Yes goldengirl i have done the DA to Levadopa back to DA journey. Although its fair to say my two experiences of taking DA's are not exactly comparable. Between 2002 and 2005 i was on Cabergoline maximum daily dosage with life changing consequences. Then after nearly 6 years of taking Sinemet, I'm now taking a combination of Apo morphine and Sinemet since April 2011. This time round my DA experience has been very different and without consequences! I believe this is because the dosage level of Apo Morphine is much lower compared to Cabergoline. Also this time round all the checks and balances are in place to ensure I'm being monitored.

I'm under no illusion that Apo Morphine has the same potential as any other DA to cause massive Impulsive/Compulsive side effects, if not managed correctly. By this i mean things like, too high a dosage level or being unaware of the risks etc. I also believe there is a very fine line between benefit and consequence when it comes to taking DA's. These drugs without doubt do help with relieving symptoms of PD. However they also have the ability to destroy lives if they are not correctly managed. This is why we are running a national campaign to raise awareness among ALL health professionals. I was staggered to find out the biggest group of health professionals who prescribe DA's are in fact GP's not neuro's? At the same time awareness and understanding of the risks vs benefits among GP's could currently be described at best as patchy! We are now in 2012 and its been 10 years since this issue hit the airwaves therefore "patchy" is not good enough! We need to raise the bar and that's why we are in the middle of planning a major campaign to educate and inform everyone from GP'S to Pharmacists down to district nurses.

regards
bluey

hi goldern girl thankyou for that informatinabout madapar,sinemet and mirapexon.blueeyes,i been lucky with my gp,he will NOT prescribe any pd meds at all out,with out gettin confiramtion from the neuro first,and thats how it should be,but i do no other members whos gps have,like you say ,need to raise the bar much further up,and i think you are doin a great job in the part you play in the campaign.

Thanks Blue-eyes
It is encouraging to hear that you have positive experiences using the Apo pen.
Our Parkinson's nurse tells us to be cautious because of the extreme nature of the DA OCD effects he suffered, but we will think again about using it in emergencies only.
My husband freely admits that if he is prescribed one he will be very tempted to inject himself repeatedly to gain the highs that he used to have!
I shall store it in my handbag!
Good luck in your work on bringing the problem into the light at last.
X

I read through all 70 odd pages of this thread last night thought it should be brought back to the front line again.

I know from my own families experience this thread really helped us to try understand what was happening to our brother.

I noticed new members were speaking of OCD's so maybe this thread might answer some of their questions.

Here's hoping


Radz x

im still havin probs with my das drug,and still the neuro has not done nothin bout it till i have the brain scan which is now got the app for beginin of february,i no i put it off,just everything got to me and at the time of askin i was goin through more stress and it just was rong time for me.to me i feel like im gettin worse,and also tears keep flowin cus i no its rong wot im doin but i can not stop,it got hold of me and has spiraled out of control.i no i belive in my religion ,and i pray alot,and i guess there is many folk out there that would not belive prayin helps the mind,nowin god is listernin to me,i belive he has his part in healin me to.but looks like im stook like this till ive had the brain scan and neuro decides then wot to do with my meds.is any other members in simualr postion as me,have a bad reaction to a da but feel like ur life is on hold cus of neuros desion wot to do?i feel lost and alone like this,and feel like no one understands how bad ive got