Birte,
I was on 1200mg sinemet per day plus agonist and COMT inhibitor pre DBS.
The increasingly longer offs despite the meds plus dystonia and when on dyskinesias were giving me a prettly appalling quality of life so I had DBS 3 1/2 yrs ago with excellent results hence very little need for drugs now except the Amantadine for gait and balance.
Regards,
Lee

Birte,
If and when the time comes to try Amantadine again, I probably will. It was very early on when I tried it. It might work now. Who knows? I'm a firm believer in if it gives relief from the symptoms and the side effects aren't worse than the disease then it's worth a try.

GregD

Birte

When I stopped taking the amantadine my symptoms definately got worse and when I increased the Madopar (similar to Sinemet) I definately saw no improvement but I had not considered reducing my Ldopa intake. As you say for someone only dx just over 3 years I take an awful lot of it. I have just retired, early, from working as fatigue attacks were making being effective at work impossible, so I can risk a bit of further drug fiddling. Especially as I am in no hurry to acquire dyskinesia. So I think I will drop from 4 to 3x125mg and see what happens. Thanks for the advise. Nothing ventured nothing gained.

Chris

Chris
Drop down SLOWLY, please...very slowly... so you can find your plateau of comfort. I cut down Requip from 12 mg daily to 8.5, and it helped - I feel much better on less. And I cut down Amantadine from 200 mg to 100 mg, and it works just as well. Good luck.
And GregD - you will probably not mind the purple ankles too much, if you get them.
Winter is coming soon, so I can hide mine - in purple socks!!

birte

husband is taking amantadine 200 mgm/day since June 07. He initially attempted to titrate up to 300 mgm/day, but experienced some vision problems, thought to be due to the anticholinergic effect of amantadine. He finds the drug has reduced his tremor and makes movements smoother.

Olsen, you are the only person to mention Amantadine's effect on vision. My neurologist told me to have my eyes checked when I said I had strange visual reactions from Amantadine. I had just had my eyes examined at the time.
At 100 mg per day I see only very faint green and pink tracings in the bathroom sink and in the tub. At 200 mg per day I saw green and pink paisley lace patterns on white walls and ceilings. The patterns were very clear and visible, very symmetric and very beautiful - but disturbing all the same. I hope your husband's visual disturbance was pleasant enough too.

birte

Hi Birte, the vision problems my husband experienced were disconcerting--in his lateral vision, inanimate objects moved. Whenever he decreased the dosage of amantadine to 200 mgm/day again, the vision problems disappeared. The visual effects you experienced are more delicate, though I do not think my husband would know a lacey pattern if he encountered it. Madelyn

Thanks Birte.I started Amantadine just 5 days ag and I too have noticed a significant improvement in my dyskenesia.However,the swelling thing concerns me.Having been brave enough to air my legs in shorts for the first time this year....BULGES...yikes yes BULGES were noticed on my knees.
Crumbs I thought. I`m growing an extra set of knee caps.
but now you have mentioned swellings...I will assume it is this rather than middle age that is the cause.
Incidentally...is the only way to stop the swelling...by stopping the druug altogether? I have been doing alot in the garden so might rest reduce this unsightly wobble?
x

Steffi, it is most peculiar what different drugs will do to different people. My feet began to swell when I stopped taking Amantadine, and until I took it again last week my feet looked as if they had been blown up like balloons, even the toes were swollen. Now the swelling is all but gone, and I have ankles again - they're going to start turning purple, but at least they're not swollen. It could be the Amantadine that's 'blowing up' your knees. I know Teresa stopped taking it because she was tired of not fitting shoes and not having a proper waist line while taking it.
I think both PD and the medicines we take can cause strange swellings and equally strange disappearances of swellings - they're shape-changing, from feet to knees to hips to waist line to hands to face. You never know what to expect.
It's only funny when the swelling has gone away again.

birte