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View Full Version : 12 yrs PD patient,advise is welcome




Dimitris
05-17-2009, 01:12 PM
Hi,my name is Dimitris.Im Greek and my english isnt good

My father is a 62 yrs old, PD patient for 12 yrs taking medication seven in good condition,last 5 gradually getting worse...

Daily Drug cocktail using atm-->Stalevo 100mg x7,Madopar 250mg x7,Mirapexin 0,7 x4-7.

Doctors advise was to adjust doses and timers by himself.Hes definately overdosed,taking 2100mg L-Dopa(stalevo+Madopar) with carbidopa and entacapone in consideration probably near 3000mg L-Dopa.Same goes for the agonist(Mirapexin) since 4.5 tablets(0,7 mg) is the max daily dose.

12 yrs ago started treatment with L-Dopa(Madopar in small doses).6years later on Stalevo+madopar(even more L-dopa)and in the next 6 monts on Mirapexin(the agonist last...)mainly for stability issues.When my father started Mirapexin(0,18 in low doses)could finally walk without backwords steps,no dizzyness so it help him a lot.Time after time doses increased(doctors advise)for better effect until today(even when dyskinesia occured 4 yrs ago and got very worse the last 9 monts).Treated by 3 neuros in the last 12 yrs(other 2 consulted)every one of them was blaming the other doctor.
-Never had brain scan,nonone told him to do
-Never did L-Dopa Test
-Given antipsycotic drag to get some sleep ,non-combatible with L-Dopa treatment which made him a "vegetable"(Nozinan-maybe other drugs enchanted the effect or the prescribed dosage was bigger than it should) for 2-3 days and neuro told me dont bother at least hes is sleeping now...After this incident hes afraid drugs from this category(sleeping etc).

1) Dyskinensia problem.Only few hours per day in condition to walk properly without help.Many hours in Off condition.
2) Sleeping disorder.My mother,his 24/7 nurse told me he hasnt slept over 3 hour nighttime(with 1 hour straight sleep tops)the last 5-6 years.
3)Hallucinations,anxiety,aggressive behaviour,the last 2 years.Maybe he had hallucinations yrs before and kept it secret,dunt know.
---Every single on of those Madopar-Stalevo-Mirapexin could cause insomnia,Hallucinations,obssesion with some acts etc(overdosed),probably even worse in combination.He cant sit on a chair a long time without the urge to stand up,increased sexual desire,walking in a "strange-silly" way like "turbo-mode"so much energy,when hes in "on" condition, i could say this is from Mirapexins overdose but im not a doctor...Atm his "on-off" timers are messed-up,the off confition with dyskinesia is difficult for him and for family members that help.

Iwonder if there is a turning-back point after being poorly treated-observed(side-effects) and overdosed for a long period...Ihope there is.




reverett123
05-17-2009, 01:37 PM
I won't presume to give you medical advise, but several times in my "career" I have felt that I was slipping deeper into PD only to find that in actuality I was overdosing. Many of the drugs have symptoms of overdose identical to rthe symptoms they are supposed to treat. And Mirapex seems to be a problem on its own.

As you know, your dad is taking a heck of a lot of stuff. If you decide to reduce it, do so gradually.

Dimitris
05-17-2009, 02:58 PM
Atm im searching for a "good" Neurologist,help him reduce the number of pills,set timing for doses etc.You are right about the thin line between treatment(beneficial)-overdosing.

Maybe "Neupro" patch could help his unstable "on-Off" state,but hes addicted to Mirapex(6 yrs intake).Using another agonist(rotigotine)or combination with Mirapex may be risky(adoctor will know).

D.B.S surgery(if hes good candidate)helps a lot in dyskinesia and reduces L-dopa needed dose but my father is really "tired" atm...

Thnx for replying

chasmo
05-17-2009, 05:39 PM
Dimitris;

2100 mg of levadopa ia about 100 mgs over what is geneally considered max dose. I was taking 2250 a day and max doses of amantadine, mirapex, and tasmar. After my DBS, in 2002, i was able to quit all my meds. I am in the fortunate 10% that are able to quit all their meds.
My suggestion to you is if you do decide on a DBS, find out all you can about the team you are considering. FInd out their postop infection rates, their overall success rates, find some of their patients and query them as to the surgery, if it was arduous, and if they would do it again.

I am a big fan of DBS but it is NOT for everyone. I have a group in Yahoo groups, health, DBSsurgery, if you want more info or to talk to others who have had a DBS or are contemplating it.
If Greece is part of the EU, I wouls investigate having Dr. Benabid in Grenoble do it. HE invented DBS for PD.

Charlie Black, PD since 1990. Bi-lateral DBS-STN in 2002 at UCLA.