Rasagiline, azlect: I was diagnosed about a... - Cure Parkinson's

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Rasagiline, azlect

Wolfepower22 profile image
25 Replies

I was diagnosed about a year ago and would like to stay off Meds as long as possible. But I am taking rasagiline as my dr says it protects my dopamine. Any opinions about that? I’m also taking SAMe for ease in joints and some macuna powder in my breakfast foods. Thanks, janet

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Wolfepower22 profile image
Wolfepower22
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Astra7 profile image
Astra7

My neuro also gave me azilect which I started straight away. He said it might help slow progression and if it was him he'd try it. There seems to be limited evidence but I thought worth a try.

faridaro profile image
faridaro

I was also started on 1mg Rasagiline right after the diagnosis almost a year ago. However, I developed mental fog/concentration difficulties and cut it down to 0.5 mg which seemed to be OK for a while, but after 6 months started having daily headaches and discontinued it.

JohnPepper profile image
JohnPepper

Sounds good to me! I took a similar MAOb inhibitor for 8 years, when I was able to come off the medication and have been off it ever since. Look at my profile to learn more

Despe profile image
Despe in reply to JohnPepper

John, any cognition problems? Thank you!

JohnPepper profile image
JohnPepper in reply to Despe

Do you mean now? If so, yes. I am 84 and would expect to have memory problems, which I have, but those problems are the same as I had in my 40's, before I was diagnosed. So I assume they are Pd related.

I also have word-finding problems, mainly nouns.

Despe profile image
Despe in reply to JohnPepper

Thank you, John! You are an inspiration to all the PwP. Keep up walking. :) My husband (PwP) and I walk every other day, but he started having knee aches and has slowed down his pace. He is trying though. Believe it's a symptom stemming from HTD and Dr. C. asked him to stop B1 for 10 days and email him at that time to arrange for a lower dose.

JohnPepper profile image
JohnPepper in reply to Despe

You may find that he is walking on the side of that foot. If you look at his shoe you will see wear on the one side, if that is the problem.

If he is walking on the outside of the foot he is supinating. He can consciously place his weight on the inside of the foot, which would immediately get rid of the pain in the outside of the knee.

If he s walking on the inside of the foot he is pronating. The same goes for the inside of the foot.

You can get an orthotic from a podiatrist, if you prefer, but that would not change the brain's 'programming'

Despe profile image
Despe in reply to JohnPepper

Thank you, I will ask him to give it a try.

rebtar profile image
rebtar

Yup, I've been taking it. No side effects that I can tell, and I seem to feel better with it. I reduced to 1/2 tab at one point to see and I didn't feel as well so went back to the whole tab. I hope it does slow progression...

Endominx profile image
Endominx

Hi I've literally been px the same.The px is still sitting waiting for me to take to pharmacy. I'm 48 and was given the post DAT scan diagnosis 3 weeks ago.I'm nervous to start and like you am about to buy some muccuna. Do you find this powder helps?I've also started cq10 daily.Do you think it's safe to take it altogether. My symptoms are so mild so reluctant to start. Dilemma!!

Pelley profile image
Pelley in reply to Endominx

"Less is more" Is the best advice I can give you coming from 12 years since dx experience . You'll also find things that work for others won't necessarily produce the same results in you!

I wish you my best with getting a grip on your PD diagnosis and treatment regime. I remember I had just turned 49 at the time of my diagnosis.

Endominx profile image
Endominx in reply to Pelley

Thankyou Pelley.I'm actually thinking I'll give it a go if it's going to protect my precious dopemine then it's worth a shot. It makes it all so real ,but, positive mind I'm moving forward. New beginnings eh!💪

gingerj profile image
gingerj in reply to Endominx

I too was 48 when diagnosed. That was 18 months back. I have only this week started on 1mg Azilect. At the moment I've been feeling worse. More shaky and headaches last few days. I'm going to give it another couple of weeks. Think sinemet is more likely to improve things.

4000Nights profile image
4000Nights

I have been on Azilect (now Rasagiline) now for four years since diagnosis and to date (knock on wood) I have shown no notable progression. In fact, with the addition of regular exercise, I now seem better than I did before my D day. It doesn't do much for symptoms but it seems to be fulfilling its intended purpose.

I take 1 mg per day but since you are a Janet not a Joe, .5 may be enough.

For minor symptoms, another herbal non-med supplement you may want to look into and try is Ashwagandha.

Wolfepower22 profile image
Wolfepower22 in reply to 4000Nights

Thanks for encouragement. Is that only med you are on? I’m taking macuna too to protect dopamine

Waiyanwong1964 profile image
Waiyanwong1964 in reply to 4000Nights

The available scientific study showed that only 1 mg dose showed the neural ptotective benefit. Neither 0.5 mg or 2 mg shown any benefit.

4000Nights profile image
4000Nights in reply to Waiyanwong1964

Good catch! Thanks. But I take 1mg. This response should also go to Gingerj.

4000Nights profile image
4000Nights

No... I also take Carbidopa- Levodopa 25/100 (generic Sinemet) three times a day to virtually eliminate my symptoms. e.g., tremor, spacey look I use to have.

PS I have no side effects.

PPS I walk everywhere i can.

janers profile image
janers

I recently read a potential side effect of azilect is stiff joints which is my major complaint so I stopped taking it last week. I feel better this week but I've started a lot of different Supplements and exercise routines recently, so I don't know what is affecting what exactly but I'm grateful that I'm feeling better and I'm taking no pharmaceutical medication. I think hands and finger exercises are very helpful and important.

Wolfepower22 profile image
Wolfepower22 in reply to janers

Hmmmm, I’m ppretty active and taking lots of natural supplements, looking into ketogenic diet with a naturopath, don’t like idea of pharmaceuticals and scared of leva dopa but my doc said Azlect will protect my dopamine, going to get second opinion I hope from Parkinson’s institute. Good luck, should we trade supplements list?

janers profile image
janers

I'm taking lots of oil's, omega-3's fish oil squallene, NAC, creatine, B vitamins, ashwaganda (an Ayurvedic herb), mucuna pruriens. I'm going to try amino acid therapy, L tyrosine, carnitine. There's a smorgasbord! I think Heavy regular aerobic exercise is really important, especially moving arms and hands.

Ozie profile image
Ozie

Azilect is a med too if I am not mistaken.

Wolfepower22 profile image
Wolfepower22 in reply to Ozie

You are so right...I’m off of it, new doc says research says it’s not effective

Wolfepower22 profile image
Wolfepower22

Anyone out there regret starting sinemat, especially those Who have been using it 5 years and longer?

Mjm012 profile image
Mjm012

Do you take 1mg at a time, or in two doses? Also, what time of day do you take it?

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