RASAGILINE........PWP have you tried it w... - Cure Parkinson's

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RASAGILINE........PWP have you tried it with good results??

Chicafromchitown profile image

My Neurologist just prescribed, I am currently on 1 1/2 of 25/100 C/L 2x day and I was also on amantadine, but it was causing very bad back pain, so my neuro put me in RASAGILINE. But I am afraid to start it. Any advice would be much appreciated. 🙏🏽

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Chicafromchitown
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pvw2 profile image
pvw2

Rasagiline, a MAO-B inhibitor, should reduce the L/C dosage that you need, reducing dyskinesia from a high dosage. In the early stages of PD, the neurologist has me on Rasagiline and Pramipexole, a dopamine antagonist. These enhance usage of the dopamine I still produce, so that I do not yet need to take L/C. At this time there is speculation that Rasagiline and Pramipexole might slow the progress of PD, but trials are still pending.

P.S.: "In Parkinson's disease, Symmetrel (amantadine) is an NMDA receptor inhibitor that raises dopamine levels in the brain, which helps to relieve the symptoms of Parkinson's."

iodine.com/drug/symmetrel

Chicafromchitown profile image
Chicafromchitown in reply to pvw2

Pvw2

Thank you for your response.

JoeKev profile image
JoeKev

My neurologist says that it may slow progression. That being said I combine it with a little Rytary. My PD is no better for it. Who knows I could be worse off w/o it.

Chicafromchitown profile image
Chicafromchitown in reply to JoeKev

JoeKev

Thank you

pvw2 profile image
pvw2 in reply to Chicafromchitown

A year ago my neurologist said the clinical trials to see if Rasagiline slows down PD would probably take 5 years. However, he could not prescribe it for that, but for its previously approved use. He did want to wait 5 years for it to get approved and me ask why hadn't I been taking it.

Zella23 profile image
Zella23

My husband was prescribed Rasagiline in January this year. He had been just been taking 25/100 CL 3 - 4 per day but was reluctant to increase dose so Neuro added in Rasagiline.

He started at half dose then progressed to full dose. It helped with movement but still had facial and body dyskinesia. Neuro added in Amantadine and dyskinesia is much improved. He can reduce C/L by a dose and often forgets to take it.

pmmargo profile image
pmmargo

I am on the same combo as you. My neuro is Dr Torres-Yaghi at Georgetown University. He believes in Rasagiline (that it fundamentally changes the course of the disease in a positive way). We have no proof of that but it also has few (if any) side effects. The Pramipexole is far more dangerous (I'm at 2.25 mg) and I have been putting on weight big time. But I also have had some miraculous positive results with Pramipexole including return of sense of taste, sense of smell and balance improvement. Best Wishes to you! (I'm originally from LA) Paul in Maryland.

PDGal4 profile image
PDGal4

I have been taking 1 mg rasagiline every morning for 6 years now. Neurologist who prescribed it believes it is neuroprotective and slows progression. I've had no side effects that I am aware of and can see no reason not to take. Since it's an MAO B inhibitor, there are no food restrictions like MAO A inhibitors (often confusion here). I eat aged cheese and drink red wine regularly. There are some med restrictions to be aware of--no Sudafed, for example -- but these are well spelled out on the info sheet, also found online.

sue2000web profile image
sue2000web

I have been on rasagiline for two years. Just one tablet in the morning. No side effects whatsoever. I am also on rotigotine patches, and simenet. I take very high dose of vitamin B1, 2000mg a day, spread over the daytime, and a magnesium in the morning. The vitamins are dr. Constantini in Italy’s protocol. He sadly has just passed away, from COVID, I believe, but his team are continuing his work. The B1 has made a huge difference to me, far more than the medication, but I keep going with the meds too. I asked my pd specialist if that amount of B1 would do any harm, and he said no, so I thought I would give it a try. What a difference, to balance, constipation, tremor, etc. do some research, but speak to your GP or pdnurse too.good luck. There is a lot of info on youtube

ladypeanut profile image
ladypeanut in reply to sue2000web

Just wanted to pass along the website B14PD.com, where Dr. Constantini's work has been pulled together by his team. It has a collection of information concerning the B1 thiamine protocol, which my husband is following as well with some success. :)

sue2000web profile image
sue2000web in reply to ladypeanut

Thanks for that info.

amykp profile image
amykp

I take it, not so much for symptoms, but because my MDS also believes it will slow the progression of my disease...though he was quick to say it wasn't actually proven. He put me on it the instant I was diagnosed.

I don't take C/L. IMO it has no side effects. I love aged cheese and eat a LOT. I've even taken sudafed, though that was because I didn't read that I shouldn't. No problem...not that I recommend anyone else do that. 😬

I don't think there's anything to be afraid of...except the price. Eek.

caitilin profile image
caitilin

I don’t want to frighten you, but if you Take a serotonin antidepressant, please rethink the resagiline. My neuro put me on it despite the warnings against it if you’re also on serotonin. It can cause Serotonin Syndrome. My doc said she wasn’t concerned because “that toxicity rarely happens.”

Well, I should have trusted my gut. I took it for about a month and ended up in the hospital with Serotonin Syndrome. It was terrifying and expensive, $14000 for 3 days inpatient. Be careful.

Rocke profile image
Rocke

I was put on rasagiline on dx. , 61/2 years later I'm still on it. Needed to renew script and it took about a week, I felt no different. The price went from 100 every 3 months to 500 for 3 month supply. MDS said I could stop it, see how I feel and think about going back if I needed it. It's been over a month and still no difference. Just too expensive for something that "may" help

blackbear701 profile image
blackbear701

I have been taking C/L (25/100)and Rasagiline (.50) for about 5 months now. I have had no side effects from either. There is a dietary restriction of no aged cheeses while taking Rasagiline, but that is at the 1mg dose. I take .50 mg and eat cheese in moderation - ironically, I work for a cheese producer! I am also on a low dose of fluoxetine but have never had any bad interactions, e.g., serotonin syndrome. I am not sure, but I think the warnings of Rasagiline are more true of the higher dose. I understand your hesitation because I am the same way, but I'd say give it a shot.

Chicafromchitown profile image
Chicafromchitown

Thank you for all of your responses.

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