Has your PD symptoms changed since ta... - Parkinson's Movement

Parkinson's Movement
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Has your PD symptoms changed since taking a MAO-B inhibitor (see list of meds below)?

pvw2
pvw2
28 Replies

The article, "Waking up dormant dopaminergic neurons to reverse Parkinson's disease" claims a MAO-B inhibitor could wake up dopamine producing neurons. This question is to see how MAO-B inhibitors have affected people here.

List of MAO-B inhibitors:

Eldepryl® (selegiline hydrochloride)

Carbex® (selegiline)

Zelapar® (selegiline hydrochloride, orally disintegrating tablet)

Azilect® (rasagiline)

Xadago® (safinamide, tablets)

Emsam® (selegiline patch)

28 Replies
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pvw2

Taking 1 mg x1/day of rasaginline and 0.5 mg x3/day of pramipexole. But, have only taken for 6 months. Symptoms haven't gotten worse, but too early to tell.

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PDGal4

I have been taking 1 mg Azilect (rasagiline) since June 2014, after I'd been diagnosed for 2 years, so have used for almost 6 years. When it was prescribed, my neurologist (at the time) said some doctors believe it is neuroprotective and slows down progression, but has not been proven. She believed it slowed down progression.

My current neurologist said 1 mg is the max; studies have shown no better results with a higher dose. (Knock on wood--I am superstitious)--I do believe my progression has been slow. My meds are not always as effective, and I do have wearing off periods and sometimes dyskinesia. It's a delicate balance between the two, as many of you know.

I am fairly stable in my meds and have cut down dosages in the past. I use 4 mg Neupro patch, after going back and forth between 6 mg and 4 mg, deciding 4 mg is just as effective and preferring to keep my meds at lowest dosages. I take 2 x 95 mg Rytary four times a day. Again I was at 2 x 145 mg and have decreased over time to the lower dosage. I do use 1/2 C/L immediate release 3 x day between Rytary dosages to manage off periods (using 1/4 tablet to 3/4 tablet depending on how meds are working that day).

I do feel I manage my meds better than I did a few years ago. I am more attuned to my body and the initial feeling before meds will wear off, for one. I know that the off periods will eventually pass, so don't go into panic/stress mode which only make things worse.

Interested in others' experiences. Still wavering to stay on Azilect or give Xadago a try, as my neurologist has suggested.

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pvw2
pvw2
in reply to PDGal4

It sounds like Azilect is doing what it was prescribed for, and it is too soon to tell if it is stopping or reversing PD's progress.

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Xenos

This thread is a very good idea.

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Astra7

I’ve taken azilect-1mg a day - since may 2016 3 months after diagnosis. My decline is so far very slow but is happening as I need more madapor than I used to to be able to carry on as normal.

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pvw2
pvw2
in reply to Astra7

Useful information. So far, we aren't seeing information backing up the article as we understand it. We invite any technical people to explain if we don't understand.

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AaronS

Interesting point to raise,

I stopped taking azilect as i never noticed it doing anything, started it back up after 6 or so months and my madopar duration increased.

So whilst i was not taking it my meds were not lasting as long but i was unawares. Started taking it and the on time increased to when i first got on meds. From my little experiment it does work but not in an obvious way more a behind the scenes type deal

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pvw2
pvw2
in reply to AaronS

Again, that sounds like Azilect works as prescribed, but too soon to tell if it is stopping or reversing PD's progress.

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anna1060

One Rasagiline a day (no other meds) is working for me. It certainly works to forestall motor symptoms (almost none save some balance) and anxiety, which was high after dx in 9/17 at the age of 80. PD determined by DaT Scan read by Neuclear medicine specialist. I also take the over the counter capsule NAC(600mg) each morning. My executive function and dependable word recall, however, is slowing nonetheless.

So, I believe in Rasagiline if you catch the disease in its earliest manifest stage.

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sharoncrayn

The critical issue or theory the S. Koreans raise is whether or not dopamine neurons are "dormant" versus the traditional theoretical view that they are "dead" or "destroyed". They theorize these neurons never die but are simply dormant.

Second, they theorize that MAOIs can actually resuscitate dormant dopamine neurons.

Third, they theorize that most PD individuals have a sufficient amount of dormant dopamine neurons (because they do not die or are not dead) that can lead to minimize progression or reverse it.

Unfortunately, they apparently don' read English medical journals regularly because this theory (dormancy as a result of a long term decline in the efficacy of dopamine neurons) has been discussed before many times before, perhaps in slightly different terms, but definitely proposed.

Cell biology at its theoretical best.

Sharon

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AmyLindy

@sharoncrayn I was giddy, Initially, when I read the Korean’s (2020 published research) and quickly had to reel it back into reality (as you’ve just done so well w your summary).

On the other hand, as a Stage 1, MAO-I & HDT (Constantini) PWP, I cling w guarded optimism to the “Neuronal awakening” Theory!

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Kitefli

I take 1/2 sinemet x3/day. I have tremor mostly in my right hand and some rigidity in the upper right side. In an attempt to reduce my tremor, I have tried taking Amantadine x1/day , Rasageline x1/day, Selegeline x2/day. I tried also increasing Sinemet to 1 pill x3/day. All with consultation of my movement disorder specialist. I didn't see any improvement with my tremor.

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ion_ion
ion_ion
in reply to Kitefli

I started C/L a year ago to control my RH tremor (3x/day) and it did not do anything. I added Amantadine 2x/day and made me sleepy without helping too much my tremor so I stopped it. I saw 5 neuro - drs and one told me the C/L will take 7-8 months to work. Some people here say it takes 15-30 minutes. I noticed for me it took 20 minutes to work except for tremor but after one year it started to help with tremor, too. It seems that doctor was thinking about tremor only.

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MarionP

"Theory" as in "including some body of confirming evidence," or "theory" as in what lawyers do with manipulation of arguments perhaps with but not necessarily requiring the presence of supportive facts, or supportive facts established exceeding any disconfirming evidence" ?

In other words, have we reason to give credence to their theory yet?

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pvw2
pvw2
in reply to MarionP

My neurologist thinks it will be as long as 5 years before we know. Disproof would probably be quicker than proof, but even that is not easy because of how differently PD patients respond to treatment and PD seems to have many causes. Astra7's case already says it doesn't stop PD's progression for every PD case. On the other hand, MAO-B inhibitors are working well for their original intent.

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MarionP
MarionP
in reply to pvw2

"On the other hand, MAO-B inhibitors are working well for their original intent."

That much is progress and of some interest I think. That's good.

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sharoncrayn
sharoncrayn
in reply to MarionP

Is their theory credible? Possibly, but who really knows?

I have lost track of the number of theories supposedly explaining why PD generally progresses for most people with have been correctly diagnosed with PD. Unfortunately, with the Korean theory (which piggybacks similar ones), physicians have treated PD with selegiline (and later rasagiline) for more than 50 years. You would think by now this drug class would have been explored under every possible circumstance.

What did they suggest that is important here?

What the Koreans are basically suggesting is that dopamine neurons are dormant LONG before they die off (which is NOT a unique thought). Therefore, if a drug revives these neurons in their dormant state, even to a degree less than 100%, then PD progression can and will be minimized....relatively speaking.

Hope this helps.

Sharon

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MarionP
MarionP
in reply to sharoncrayn

Hmmph. Maybe more of us can donate our brains to science, or better yet, sign that little box if we get killed in traffic that our brain should immediately go to whoever can biopsy our substanta nigra and various environs and figure out if there are some dormant neurons in there. Maybe we can biopsy some Parkinson-induced mice.

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pvw2
pvw2
in reply to sharoncrayn

Our knowledge of PD has many pieces we haven't put together yet, only theories.

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tomatera

I take xadago which is unique in that it is safinamide. I rarely have off times, my balance is better, my mind sharper, improved fatigue, tremors reduced, walking and gait much improved. I have no side effects. You don’t hear too much about it because it’s fairly new and expensive. Not many take it. It’s really done wonders. I started with samples from the Dr before I bought it.

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Despe
Despe
in reply to tomatera

Hello tomatera! May I ask how much you pay and if it's covered by your health insurance. Thank you.

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tomatera
tomatera
in reply to Despe

Sure, The retail price is upper $800 for 30 days. I get 90 day supply through my group insurance and the manufacturer world meds kicks in about $100 on the copay to bring my cost down to $25 for 90 day supply. There is a phone number on xadago.com that helps you determine what your coverage and cost may be.

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Despe
Despe
in reply to tomatera

Thank you! I sure will check their website. We have Federal BC/BS.

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Judyrsmith

Azilect was my first prescription and was like magic. I could walk faster, there’s less stiff, and feel better.After more than seven years I have progressed relatively slowly but of course don’t have any comparison

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MarionP

Speaking of MAOI inhibitors, does anyone know anything about Brazil nuts?

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Despe
Despe
in reply to MarionP

Yes, they have lots of selenium. :)

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chartist

The five known most potent plant based MAO-B inhibitors are :

1. Amur Cork Tree- Phellodendron amurense

2. Bakuchi Seed- Cyamopsis psoralioides

3. Licorice Root Extract- Glycyrrhiza glabra

4. Gan Cao - Glycyrrhiza uralensis root

5. Psoralea Fruit/Babchi - Psoralea corylifolia

Most are available online.

Art

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