Anyone taking Selegiline also called Elde... - Cure Parkinson's

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Anyone taking Selegiline also called Eldepryl?

Hikoi profile image
26 Replies

My meds (carb/levadopa) are wearing off by three hours and I need something to extend my on time. I'd be interested in hearing peoples experience of this drug?

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Hikoi
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26 Replies
wifeofparky profile image
wifeofparky

When my husband changed from a neurologist to a Movement Disorder Specialist, the first thing he did was add selegine to his regimen. He told us it helped to slow down the progress of PD. His sinemet seemed to last longer also.

cheerspark profile image
cheerspark

Hi,

I am a young onset PD. I have been taking Seligiline only for the past 4 years and recently added Requip. Seligiline is believed to have neuro-protective effect, that is to prevent the deterioation. However, this effect is arbiturary. I have not experienced any side effect and I can't prove its efficacy. I am deterioating in my motor function anyway. However, my neurologist believes it will help.

Cheerspark

Hikoi profile image
Hikoi in reply to cheerspark

Thanks cheerspark and wifeofparkie.

Selegiline is an older drug, most people seem to now use Rasagiline (azilect) which is related but not the same.

cheerspark profile image
cheerspark in reply to Hikoi

I asked my neurologist to change from Seligiline to Rasagiline once hoping it got better effect. He turned me down by saying they don't got special advantages over each other. Till now, I am still taking Seligiline with Requip.

Hikoi profile image
Hikoi in reply to cheerspark

Thanks for this cheerspark

Pete-1 profile image
Pete-1

Hello Hikoi,

Not going to be much help here as I've been taking Selegiline for a while now and I am unaware of any benefit. Along with its supposed PD benefits it is also meant to be a mild anti-depressant. Well I'm not depressed so perhaps its working but then I don't know what I would be like if I'd never used it.

Another drug Entacapone which is the 3rd component of Stalevo along with Sinemet (Levodopa and Carbidopa) is specificaly taken to inhibit the chemical that normally breaks down Dopamine once it has been used thereby lengthening the time that Dopamine is available for re-uptake and re-use. I read somewhere that a dose of Levodopa in whatever form is lengthened by 1.4 hours by taking Entacapone.

I've been taking Entacapone for several weeks now and it does seem to prolong the on-time and at least sometimes by that 1,4 hours.

Entacapone is usually administered in the form of Stalevo but if your doctor wishes to experiment with varying proportions of Entacapone then the Levodopa and Entacapone can be administered in separate tablets.

For further research, googling etc. I think these inhibiting type of drugs come under the headings of MAO-B (Selegiline) and COMT for Entacapone. The MAO-A variant drugs caused problems (?) and required careful managing of your diet so they are not used now.

That's all I know off the top of my head.

TTFN

Joanne_Joyce profile image
Joanne_Joyce

I've also had good results by taking Stalevo to extend the effectiveness of Ldopa while still maintaining a low enough strength to avoid dyskinesia.

Hikoi profile image
Hikoi

Thankyou Pete and JJ

I did wonder if Selegeline had any advantages over Entacopone but I think now Entacapone will be the next choice. Glad to hear it is working well for you both.

(Both Rasagiline and Stalevo are not available in my country on the health service :( and we dont have any long acting agonists so quite restricted )

finlander profile image
finlander

I have been taking selegiline together with carb/levo and mirapex for 2 1/2 years. My neurosurgeon said selegiline would delay the progression of the disease. I thought the mirapex was suppose to stop the tremors. Unfortunately, this combination has started wearing off in 2 1/2 to 3 hours. But, oddly enough, it sometimes spontaneously "kicks back in" on it's own and I start feeling normal or almost normal again. Don't know what to make of that. And, of course, there is no way for me to tell which of these drugs is losing it's effectiveness since I have always taken them together. Wonder what would happen if I added entacapone. Would I have to eliminate the selegiline in exchange for the entacapone?

Hikoi profile image
Hikoi in reply to finlander

Thanks Finlander. I have the wearing off too. Its the carb/lev that is the problem. I have friends who take it 2 hrly now.

As to adding entacopone i hope it would make your carb /lev would last longer. I think some people find they can reduce the amount of cab/lev they take once they start entacopone. Reading the responses here i think i need entacopone now. I hope i can start it soon.

People i know take selegiline with entacopone.

ivyanne profile image
ivyanne in reply to Hikoi

Entacopone definately makes my carb/leb last longer but also increases the intensity of my dyskenesia during off time

Hikoi profile image
Hikoi in reply to ivyanne

Thanks ivyanne

JohnPepper profile image
JohnPepper

I took eldepryl from 1992, when I was diagnosed until 2003, when I was able to stop taking any Pd meds at all. I did not take any other drug than eldepryl, which is most unusual. I refused to take sinemet, because I don't believe it has any beneficail effects on Pd. It merely temporarily masks some of the symptoms. I am not a doctor, so I could be wrong.

fwes profile image
fwes

We do not have to speculate, the relationship between selegiline and rasagiline has been carefully analyzed in a peer-reviewed paper: Selegiline and rasagiline: twins or distant cousins? by Knudsen Gerber DS.

Very briefly, Selegiline carries a danger of the dangerous food interaction called the "cheese reaction" and seems to offer no neuroprotection, while Rasagiline offers some neuroprotection and is much less likely to cause a "cheese reaction".

From the Abstract (ncbi.nlm.nih.gov/pubmed/212... ... The first monoamine oxidase (MAO-B) inhibitor for PD, selegiline (Eldepryl), was approved by the Food and Drug Administration (FDA) in 1996, and rasagiline (Azilect) received FDA approval in 2006. At first, pharmacists may assume that rasagiline is just another me-too drug. There are three areas in which the two medications differ from each other: MAO type A inhibitors are found in high concentrations in the intestines, and MAO type B inhibitors are found mostly in the brain. If MAO-A inhibition occurs, the body cannot protect itself from exogenous amines such as tyramine. The absorbed tyramine can cause hypertensive crisis, also known as the cheese reaction. ... Selegiline is a propargyl amphetamine derivative that undergoes extensive first-pass metabolism to L-methamphetamine and L-amphetamine. Rasagiline's major metabolite is amioindan, which has no amphetaminelike properties. Selegiline has been reviewed looking for neuroprotection, but studies have been unable to come to a definite positive neuroprotection conclusion. Proponents of rasagiline's neuroprotective effects also point to clinical studies in humans that demonstrate delayed and reduced need for future use of levodopa. In summary, selegiline and rasagiline look more and more like distant cousins instead of twins.

Hikoi profile image
Hikoi in reply to fwes

Unfortunately in Some countries you don't have the choice of rasagiline.

I have read a number of articles similar to this regarding the cheese reaction and selegiline

"In dosages up to around 10 mg or so daily, selegiline retains its selectivity for the type-B MAO iso-enzyme; but it is also a weak reversible inhibitor of the type-A MAO iso-enzyme. In contrast to unselective and irreversible MAO inhibitors such as tranylcypromine (Parnate) and phenelzine (Nardil), both of which strongly potentiate the catecholamine-releasing effect of tyramine, selegiline inhibits it. This ensures that low-dosage selegiline does not induce the hypertensive "cheese effect". A regimen of 2 x 5 mg daily of selegiline irreversibly inhibits over 90% of MAO-B in the basal ganglia, the location of over 80% of dopamine in the human brain. This level of MAO-B inhibition leads to a 40%-70% increase in synaptic dopamine."

Pete-1 profile image
Pete-1

I Hikoi,

I've been taking 10mg / day for some years now and I'm not aware of any before and after effects / benefits.

I also take a Entacopone which is the third ingredient in Stalevo and being an inhibiter of MAOs should extend the on period.

I seem to remember when I first started on Entacopone that my on period was a bit longer but not by a huge amount. I can't remember now how much. The figure 40 minutes rings a bell, don't know why though.

There, that was a useful post wasn't it!

Pete-1 profile image
Pete-1

Hello Hikoi,

Well if you get 3 hours on time from one dose then I think you're lucky. My on time has never been that long Even now I take Entacopone a COMT inhibiter that is supposed to extend your on time by 1.4 hours or so. Also I have been taking Selegiline for some years and that should extend the on time too.

I must have a day or two where I record all timings and efficacy to be sure but I think my on time is usually about 2.5 hours, maybe a little more depending on what I'm doing.My drugs seem to follow a roughly 4 hour cycle 1 hour wait for on-time, 1 good hour of being almost normal and then about 1.5 hours of on time. But not reliably so. It can very quickly switch off. I have always felt undermedicated but I don't think they want to give me a higher dose as there isn't much in reserve before reaching the maximum allowed.

Hikoi profile image
Hikoi

Thanks for the update Pete.

No i don't get three hours on time though take meds three hourly. My experience is more like your pattern which sounds familiar.

Blue-jeans profile image
Blue-jeans

I only take Selegiline, I'm following John Peppers example, I have never taken Dopamine, and am happy with the slow progression of my PD symptoms. My sister has PD and is in the advanced stages of dyskinesia, if she cuts her dopamine intake, her rolling turns to shaking. I am avoiding dopamine for as long as I can.

Hikoi profile image
Hikoi in reply to Blue-jeans

Hi blue jeans,

I read elsewhere you also take ccarblev.? I would prefer to take rasageline but it is not available to me.

An interesting aside I just read:

The metabolic pathway (of selegiline) may cause persons taking selegiline to test positive for amphetamine and or methamphetamine on drug screening tests..

That's why I feel good!

Blue-jeans profile image
Blue-jeans in reply to Hikoi

Hi, a few months ago my Neurologist put me on Carbilev, it made me so nauseous, I only took them for two weeks. I take Parkilyne (selegiline), coconut oil, and blood pressure tabs. I wish the meth and amphets made me feel better :) I get a bit depressed sometimes!

Hikoi profile image
Hikoi in reply to Blue-jeans

Blue jeans I see a lot of people writing carb-lev makes them nauseous. I know any form of it can do that but I wonder if that particular brand of levadopa is worse, but I don't know.

If you have been diagnosed 6 years and only on eldepryl you are doing well.

Blue-jeans profile image
Blue-jeans in reply to Hikoi

Yes Hikoi, I am very happy with the slow progression, my sister 5 yrs older also has PD and she is very bad. I am of the opinion that if one starts early enough, exercise, eating correctly and positive thinking is better than dopamine. Have you visited John Peppers site? I was fortunate to meet him soon after I was diagnosed. If you haven't yet, read what he has to say!

Hikoi profile image
Hikoi in reply to Blue-jeans

I have, but his tremor is essential tremor which is different to mine and he says he does not have idiopathic PD and I do.

How do you find your symptoms now blue-jeans, has your sister been diagnosed the same time as you? My brother and I were and we are similar age difference too!

Blue-jeans profile image
Blue-jeans in reply to Hikoi

Hi Hikoi, I'm very happy with the slow progress of my symptoms, I have a 'not too bad tremor' in my right hand, and

VERY slight in my bottom lip. My balance is not great and I have difficulty turning over in bed. My sister was diagnosed in 2001 and me in 2009, we were both in our late 50's she is 5 years older than me.

Um.....?? I am sure John has PD??

Blue-jeans profile image
Blue-jeans

I have also tried cannabis in cake, and lately cannabis tea, I don't feel any different, I perhaps shake slightly less, but I'm not convinced it's helping, and am nervous to increase the dose :)

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