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 about
you did the rite thing for your hubby at the time wot you thought was rite,you no him beter than anyone
ifelt 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 harm
agin 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 him
im 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 also
gg 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?
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.
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.
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.
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.
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
The good news is you wont need to refresh threads like this after the 17th January. Because without stealing Parkinson's UK thunder, they are launching a dedicated and highly visible area on this forum for ICB's (Impulsive and compulsive behaviour) side effects.
So watch this space for next week!
Thank you for that info Bluey, I do think this thread must be easily seen. I have no doubt that many many others will gain so much knowledge from it.
I hope you are as well as you can be.
its still happinin to me spend spend spend,cry cry cry ,feel like poop,i thought spendin money is ment to make u feel good bought ur self,well it does when im actually doin it,but then it weres off when back home,i go low agin and just cry and wonder why me.ijust wish there somethin i can do now to stop me self from doin it,neuro still says i got to wait for feb for the scan agin ,but in mean time are just feelin crappy bout me self.i come on the laptop and try really hard to push me self,take me mind off it.but it dont last im then goin on ebay etc,lookin for wot i can buy over the internett.anyone out there who can give advice wot i can do now,cus neuro dont seem to be bothered just yet,no mater how much i tell her,just get the answer,dont wont to take u off mira just yet till we no wot we are facin with ur scan,one month to go, amonth to me feelin like a year rite now
and also were is the new area on the forum for ocds ,i thought it was goin to be here,ive been waitin for anyone for advice for me.
Stop dwelling on things you can't change and do something about the things you can !!
pardon,im not dwellin on anything caroline,ur post does not make sence to me,sorry
ali, if your neuro putting you off and your obviously feeling desperate and frightened either call pduk for moral support or beg your neuro to bring apt forward to simply get it over with, that way you and neuro can plan ahead best course of action for you. If your still not ready for mri/scan? then write down your thoughts about meds and how you feel their impacting on you and evaluate others experiences of meds increasing/decreasing or even changing maybe and phone neuro/pd nurse/pduk with your thoughts and see what advice you get. I'm not sure this is the best plan but at least it will give you a self-focus and take up some of that time when your feeling low. Message me if you need to get everything of your chest. Sorry i'm not much help :(
Thinking of you as always
Life is not about expecting, hoping, and wishing. It is about doing, being and becoming. The more you depend on forces outside yourself the more you are dominated by them.Stop looking for a scapegoat in your life, but be willing to face the truth within yourself and right your own wrongs.
"A Guide For The Advanced Soul" - Susan Hayward.
PD changes how you feel and what you do but it will only change who you are if you let it.
My apologies for straying off topic. Its just that although I have real sympathy for people who have severe problems in their lives from the awful side effects of Parkinsons medications and that these issues impact on their lives with sometimes tragic results, there seems to be a culture among some people that means that they blame everything that is wrong in their lives on PD and PD meds. Its similar to some people who are talented artists blaming their "artistic temperament" for being rude, illmannered and anti social.
PD changes what you do and how you do it. It will only change who you are if you let it.
Now I sound condiscending.
I shall now apologise once more and make my exit. (stage left)
That is exactly what I was trying to say.!!
drobb,i had a long convo with a nurse off puk helpline,a while back,she was very helpful,and very kind too.my app wont be brought forward now cus its in feb ,not long to go ,i guess,but feels ages to me,i wonted to no if any one was havin the prob iam ,the waitin game ,waitin for meds to be changed,waitin for another scan cus neuro thinks there more things goin on with parkinisum.and wot ur doin to help your self in the mean time with the effect the mira is havin on you,im spendin money like anything.all i can think of is dont go out ,and i wont.but its then to keep off ebay etc.beci last nite took my visa card off me,im so frustrated about it,but deep down i no she doin the rite thing.i really wish i never put the scan off before xmas when they offered it me,ino its my fault i would have answers by now,but i got scared.