Is ELDEPRYL the reason for my PD not getting vorse the last 15 years?

[snorre]

To be among those who were so unlucky to withdraw the card Parkinson's disease, I am so blessed to belong to a very rare group of PD patients where the development of the disease is almost completely stagnant.

This unique and very rare development where PD does not get worse as the years go by (About 16-20 years now) must have a cause, one would think.

The only thing I see I do differently than most others is that I take ELDEPRYL 10mg 1 tablet per day.

I have been doing this for about 16 years now and have on several occasions asked specialists in medicine if I can just stop with them and everyone has recommended that it is just to stop.

In the last 2 years, however, the development has also been less pleasant for me when 2 years ago I started to get symptoms I did not understand.

It all started with short periods some days where my throat narrowed and I started breathing more and faster (SOB).

Shortnes of breath.

It took more than a year before I realized the connection with the ON / OFF problem and am probably as of today somewhat confident that these symptoms, which I will call SOB, come from the fact that there is too little medicine in the system.

So my question to you out there in the big world ...... do you know of any PD patients who have not had any negative development on this disease and who take ELDEPRYL 10 mg daily?

"selegiline hydrochlorine 10mg"

[Nitro53]

What symptoms do you have if I may ask?

[Mimer in reply to Nitro53]

It is a relevant question. There are indications that the type of dominant symptoms are related to progression rate.

John Pepper says he has been taking Selegeline for many years as monotherapy. But stopped the medication completely some years back.

There are some studies that you probabaly are aware of that indicate that Selegeline can slow the symptom progression, For example this Swedish long term study (of 140 people) from 2006.

Selegiline slows the progression of the symptoms of Parkinson disease

"After 5 years in combination therapy, the mean difference in the UPDRS total score was nearly 10 points, with patients receiving placebo having 35% higher scores. Simultaneously, patients receiving placebo needed progressively higher doses of levodopa than patients receiving selegiline; after 5 years, the mean dosage of levodopa was 19% higher with placebo than with selegiline (p = 0.0002)."

n.neurology.org/content/66/...

I am on Selegeline myself, but only for about nearly two years.

[Hidden in reply to Mimer]

Thank you for linking this study. Do you know which is a more potent MAOB inhibitor, Azilect or Selegiline? Azilect is newer but not necessarily better. For an OTC MAOA inhibitor, I’ve read that 5-HTP , Quercitin, and Resveratrol are helpful.

[Cagey84 in reply to Hidden]

Azilect (rasagiline) is the one to go for as the breakdown products of selegiline are similar to amphetamines.

[Hidden in reply to Cagey84]

Thank you. Having taken a deep dive on this today, I read that. I appreciate your confirming it. MAO A inhibitors are protective as well. I wonder if there would be benefit to adding that? I just started Azilect today

[Mimer in reply to Hidden]

I would not try that. In my opinion, the evidence and effects of the neuroprotection of MAOIs are not proportional to the cost. Adding also an MAO-A inhibitor will, for example, make you sensitive to tyramine in food.Exercise seems to be a far better option if you want to affect the disease progression.

[Cagey84 in reply to Mimer]

Depends where you are - I’m in the UK and rasagiline costs me nothing, and only costs the NHS £5.50 per month, around $7

[Astra7 in reply to Hidden]

I’ve taken azilect since diagnoses and while my decline is quite slow it is definite as evidenced by my steadily increasing dose of madapor, and my new problem of freezing and then falling on the tennis court.

[Cagey84 in reply to Hidden]

I would stick to rasagiline as MAO -A inhibitors are responsible for the tyramine effect

[gregorio]

do you take any other medications or just Seligiline

[Dap1948]

Do you take other meds as well as Seligiline and has the dosage of these other meds increased over the years? As you talk about ON/OFF it would presume that you do. If the dosage of these other meds has increased then you can’t talk about the disease not having progressed...

[snorre in reply to Dap1948]

I take sinemet and eldepryl.The use of sinemet has for long periods been konstant or the same.The use of eldepryl has been the same from the first day.

It is the people that treets me that is saying that my case is rear and spesial , not me

[Mimer in reply to snorre]

Progression is like most things individual and on group level following a standard distribution. There are always outliers that have a lower or a higher progression rate than the mean value. It is not likely that Selegiline alone is the reason for your slow progression, but it could very well contribute. Could you think of any habits, food, or supplements that also could contribute?

Do you come up with anything out of the ordinary, like eating salmons five days per week, fast cross country skiing, or daily cold baths in the ocean? If nothing else, you have got material for a book or website about your way to manage PD. 😉

[HekateMoon in reply to Mimer]

😂some parky humour is raising my dopamine...can i write a book about this?

[tandolino]

I just started taking Seligiline just (1) 5mg pill/ day. I noticed I started having sever pain in my left thigh. I don't know if this will go away or if I should just stop with this drug? I would like to be able to use less C/L but if this pain continues I will not be able to. if anyone has any comments or exepeiences I would appreciate it.