Amantadine Patient Views

I started generic amantadine 6 days ago. I take 1 tablet (100mg) first thing in the morning alongside my first c/l dose. It has worked well to control dyskinesias. The main bothersome side effect for me has been insomnia. It has been much harder to sleep - I wake up in the middle of the night wide awake and takes about 2 hours to fall back asleep. The second major side effect is constipation. It is much slower. I used to go once a day and now I go every other day. The third side effect has been less frequent trips to pee (which is better for me as I used to go a lot).

I am 44 years old. The author has been fighting Parkinson's for 1 year. The author started with Azilect for 1.5 months 6 months ago. The author has not seen any benefit. But when the author left Azilect, their complaints increased and started tremors and shaking on their right feet when they had no tremors. And now, Bradykinesia in their right arm that impressed them the most. The author is young, and has difficulty in doing their job and profession. They don’t want to start Levadopa/Carbidopa for resistance in the future. They avoid and are afraid of these treatments. Now their Neurologist recommended Amantadine for their symptoms and they’re afraid it would make them worse. Anybody can tell me experience about Amantadine using in PD.

Amantadine did wonders for me

It helped my gut health, which is closely tied to brain health /anxiety. It helped my anxiety, which had been pretty crippling and it helped the pain in my leg, hip and butt that had me worried I'd soon be in a wheelchair. Only other good side effects for me but more conclusive for my neurologist that my symptoms were indeed parkinsonism. He had me try amantadine for some remaining tremors, which I didn't tolerate well but I remain on a low dose. The dopa does contribute some 😴😴😴 tiredness

Amantadine works for me, but I guess as with anything, it may not be suitable for everyone.

I took amantadine for about three years, but quit because it was causing Levitas reticularis (purplish discoloration of the skin). Not harmful according to my neurologist but I

My MDS told me that the amantadine can act as a stimulant. I also had insomnia and vivid dreams from taking it. She switched me to the extended release brand-name Gocovri and had me take it in the morning and that fixed the sleep problem. Unfortunately, as many do, I developed the side effect livedo reticularis. It started out on my thighs and eventually started to spread to my whole body so I discontinued the amantadine working with my MDS to wean off it slowly. Some people think that the rash might be harmless but they're not sure so I wasn't taking any chances. It's also pretty unsightly. Now I need to find something else to help with wearing off much earlier.

I’ve been on it for almost a year. It’s been great. It has really reduced my dyskinesia. My initial advice is to be patient with it and give it time to work. It took about 3-4 weeks to really take effect and work the way my neurologist and I expected. I don’t have regular insomnia problems and this hasn’t changed that. I think there is something to the constipation. I go about every other day now. But if I can keep up with my fruit and vegetables (which I do struggle to get enough) that seems to help.

I’m on amantadine as well as c/l and my mds says the amantadine helps extend or prolong the dopamine in my brain. I tolerate it well and it seems to help my stiffness. Good luck! Btw I do think a fellow patient might be right - when the pills were yellow they seemed to work better than the red that my pharmacy gives now. I’m going to ask them about that.

The first time the patient took amantadine was very encouraging. About two hours after the first dose the patient's tremors subsided remarkably.

However, that is not the full story. At the time the patient was taking an ACE inhibitor for blood pressure. ACE inhibitors are well known for producing a dry cough and the patient had one which gradually got worse. The patient would be OK on awakening and get hoarse as the day wore on, and the patient's cough kept getting worse. The patient realized they had gastric reflux causing the hoarseness and coughing.

A pulmonologist did a barium swallow test where they do an X-ray video of the patient while swallowing. Afterwards she said, “This is bad. This is very bad. In 1 to 5 years the patient will no longer be able to eat. But don’t worry, we can put a hole in the patient's stomach and pour in nutrition that way.

This was obviously a worry but about 3 weeks later the patient realized that they woke up without the gastric reflux and about 2 hours later they grew hoarse. And that was two hours after the patient's amantadine dose.

The patient stopped amantadine for 3 days and the hoarseness and cough disappeared. The patient restarted the amantadine and it came back. The patient stopped amantadine and it disappeared.

That was 6 years ago and the patient hasn’t had swallowing problems since.

The patient doesn’t blame the doctors because this seems a rare side effect. If you look in the Physician’s Desk Reference you find it is not listed as a side effect which showed up in the testing process. However, after marketing it seems a number of other side effects are listed, including “dysphagia” or difficulty in swallowing. Just that one word!

The patient's point is not to run down amantadine but rather that there are a lot of side effects possible with many drugs and we just have to be observant. The patient was lucky that the 2 hour connection between the amantadine dose and the patient's coughing hit them.

We can’t put it all on the doctor. The patient is sure amantadine is fine for many people, just not for them.