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Old 04-07-2013, 07:01 AM   #1
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selegiline for RSL

Has anyone been prescribed selegiline for RSL? My doctor just prescribed it but I'm really concerned. It interacts with a lot of medications and it also you have to foods high in tyramine which he didn't tell me. He wants me to start at 2 pills a day (10 mg) and gradually increase it 30. Any experiences would be appreciated.

 
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Old 04-19-2013, 05:32 AM   #2
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Re: selegiline for RSL

That's interesting. I have not heard of Selegilene being prescribed for RLS but it is widely used for neurological conditions related to diminished dopamine and notably Parkinson's. I understand that it has some drug interaction risks as well as some food issues such as avoiding mature cheeses and smoked meats while taking it.
Doctors should really warn patients about these matters. I would suggest reading the notes carefully and also doing some Internet research.
I am suffering RLS due to dependence on pramipexole and I plan to ask my doctor about changing to Selegiline.

 
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Old 04-19-2013, 08:30 AM   #3
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Re: selegiline for RSL

Quote:
Originally Posted by TopGeek View Post
That's interesting. I have not heard of Selegilene being prescribed for RLS but it is widely used for neurological conditions related to diminished dopamine and notably Parkinson's. I understand that it has some drug interaction risks as well as some food issues such as avoiding mature cheeses and smoked meats while taking it.
Doctors should really warn patients about these matters. I would suggest reading the notes carefully and also doing some Internet research.
I am suffering RLS due to dependence on pramipexole and I plan to ask my doctor about changing to Selegiline.
Thanks for your reply. I did find one or two studies on the internet which seemed to support that Selegilene could help for RSL. I also understand that it has anti-depressant qualities (search the threads on this site and you can find a number of comments). But as you say this drug interracts with a lot of other drugs and you have to avoid certain foods. The issue I understand is that Selegiline interferes with the breakdown of tyramine in your body and could lead to life threatening high blood pressure developing.

There are some foods that are must to avoid - liver, smoked meat, red wine, fermented cheeses but after that it gets confusing some recommendations go further to limit foods that have moderate amounts of tyramine. Some commentary also suggests that as long as your dose does not exceed 10mg you can avoid the food restrictions. I find it all very confusing.

I haven't started this drug yet because I'm very upset with my doctor. I asked specifically whether there were any side effects and he said no. Nor did he tell me any of the risks or food restrictions. I only found out from my pharmacist who was very concerned because I had been on a drug contraindicated at the red alert level (and for some drugs you need to be off them for at least a month before you can start Selegilene). Luckily, I had stopped taking it well over a month ago so it was not an issue but I was very upset to learn all of this after the fact from the pharmacist. And as a result I have no trust or confidence in my doctor.

Anyways, if you do raise Selegilene with your doctor, I would be interested to hear what he says.

 
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Old 04-19-2013, 08:47 AM   #4
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Re: selegiline for RSL

As it happens, I just got back from talking to my doctor and I have a prescription for Selegiline that has to be ordered by the pharmacy. I will have it later today. It is rather expensive and we only get reimbursed if it's prescribed by a specialist.
My doctor was much like yours and said there are only restrictions on foods at higher doses than I would be taking. The only instruction he gave was to stop taking the pramipexole.
I have also had a good look around on the Internet and found several sites that mentioned the food restrictions only applying to doses above 10mg per day.
Evidently that would be a concern if your doctor plans to increase the dose.

 
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Old 04-19-2013, 01:39 PM   #5
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Re: selegiline for RSL

Quote:
Originally Posted by TopGeek View Post
As it happens, I just got back from talking to my doctor and I have a prescription for Selegiline that has to be ordered by the pharmacy. I will have it later today. It is rather expensive and we only get reimbursed if it's prescribed by a specialist.
My doctor was much like yours and said there are only restrictions on foods at higher doses than I would be taking. The only instruction he gave was to stop taking the pramipexole.
I have also had a good look around on the Internet and found several sites that mentioned the food restrictions only applying to doses above 10mg per day.
Evidently that would be a concern if your doctor plans to increase the dose.
Thanks for getting back to me. My doctor had planned on increasing the dose over a period of 8 weeks. He initially wanted me to start at 10 mg, 5mg in the morning at 5mg at lunch (he said taking it later in the day may keep me up at night); then to increase to 20 mg and then to 30 mg over an 8 week period. He said that at some point something like a lightswitch goes off in your body and stops the muscle movements and the dose may vary for different people. He then said I could reduce the dose if I felt, for example, 10 mg was just as good as 30. Anyways, just sharing this information with you as my doctor is considered to be a leading expert here in Canada on sleep disorders, though as I've indicated I'm very unhappy with him and have decided to look for another doctor. Let me know how you feel on it and whether it helps.

Take care.

 
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Old 04-20-2013, 03:26 AM   #6
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Re: selegiline for RSL

Quote:
Originally Posted by Canuck65 View Post
Thanks for getting back to me. My doctor had planned on increasing the dose over a period of 8 weeks. He initially wanted me to start at 10 mg, 5mg in the morning at 5mg at lunch (he said taking it later in the day may keep me up at night); then to increase to 20 mg and then to 30 mg over an 8 week period. He said that at some point something like a lightswitch goes off in your body and stops the muscle movements and the dose may vary for different people. He then said I could reduce the dose if I felt, for example, 10 mg was just as good as 30. Anyways, just sharing this information with you as my doctor is considered to be a leading expert here in Canada on sleep disorders, though as I've indicated I'm very unhappy with him and have decided to look for another doctor. Let me know how you feel on it and whether it helps.

Take care.
Just took my first Eldepryl (Selegeline Hcl) pill after breakfast. My doc just said to follow the guidance on the product notice. That says the normal starting dose is 5mg per day after breakfast. If the desired result is not achieved after two weeks, the dose can be increased by an additional 5mg after lunch making a 10mg dose per day. I know, from reading reviews on the Internet, that much higher doses are prescribed.
I'll let you know how I respond. In addition to RLS, I also have essential tremor in my hands and legs so I'm hoping the selegiline will also help with that.

 
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Old 04-20-2013, 07:09 AM   #7
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Re: selegiline for RSL

Quote:
Originally Posted by TopGeek View Post
Just took my first Eldepryl (Selegeline Hcl) pill after breakfast. My doc just said to follow the guidance on the product notice. That says the normal starting dose is 5mg per day after breakfast. If the desired result is not achieved after two weeks, the dose can be increased by an additional 5mg after lunch making a 10mg dose per day. I know, from reading reviews on the Internet, that much higher doses are prescribed.
I'll let you know how I respond. In addition to RLS, I also have essential tremor in my hands and legs so I'm hoping the selegiline will also help with that.
Thanks and good luck.

 
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Old 04-20-2013, 03:22 PM   #8
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Re: selegiline for RSL

Quote:
Originally Posted by Canuck65 View Post
Thanks and good luck.
No initial reaction one way or the other but I gather it takes time for the effects to be felt. It seems surprising that your doc is recommending you start on 10mg and that he plans to increase to 30mg. Perhaps your case of RLS is more severe than mine.
The pack notes with my pills seem to suggest that 10mg is the usual max dose although they do say that the dose can be increased to 30 or 40mg. However, they are referring to Parkinson's, which is evidently more serious than RLS.
What do your pack notes say?

Last edited by TopGeek; 04-20-2013 at 04:05 PM.

 
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Old 04-21-2013, 07:00 AM   #9
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Re: selegiline for RSL

Hi there,

My prescription only came with some general information about the drug and side effects and the warning not to eat certain foods but nothing about ordinary dosing. My pharmacist said nothing about the dosing other than that he was concerned that taking the higher doses at breakfast and lunch might be too close together and asked me to check with my doctor on this point.

I don't believe my RSL is that bad. I never knew I even had it until the sleep study was done. I don't have a copy of the report yet but I think my doctor told me I had about 200 muscle movements in the night and I slept about 6 hours and a certain percentage of these movements were associated with a sleep disruption but I forget the percentage (maybe 70%). Is that bad?

I don't know the rationale for prescribing at higher doses other than what he told me - that you have to find the point where the light switch in your body turns off the muscle movements and that varies from people to people.

Anyways, as I've said I'm very upset with him for not explaining the implications of this drug to me. He hasn't returned my calls and I can't get any appointment before my original follow up which was in June. I'm trying to find a new doctor which might take awhile. So for the interim, I'm not going to try the Selegiline. But I do hope it provides some relief for you.

Take care and thank you for your responses.

 
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Old 04-21-2013, 08:14 AM   #10
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Re: selegiline for RSL

I understand your concerns about your doctor's lack of explanation but the pharmacist should have been able to see, from his/her compendium that after breafast and after lunch are the standard dosing times for selegiline.
Perhaps the US pharmacies have the same attitude to patients as they do in the UK ie. don't give the patient any more information than is necessary. Here in Belgium, we get a comprehensive leaflet with every product. Probably most people don't read the notes in full but it is valuable information for those who want to know.
According to what I have now read on the Internet, 10mg per day is the maximum dose normally prescribed for RLS. Higher doses are usually reserved for PD sufferers who have to substitute selegiline for levodopa.
As you've had a sleep study, your doctor may have particular reasons for proposing the higher doses but he/she should explain that to you.
In my case, I still have no effects of any kind but I have also read that the onset of selegiline action is quite slow. No doubt, that is what your doctor means by the lightswitch effect.
By all accounts, selegiline is an effective treatment for RLS so I hope you do get some answers soon.

 
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Old 04-21-2013, 08:54 AM   #11
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Re: selegiline for RSL

Thanks again for your response. I hope it works for you. And I'll let you know if I try Selegilene.

 
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Old 04-24-2013, 03:23 AM   #12
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Re: selegiline for RSL

Just an interim report to say that I have had the last two nights of deep sleep without any signs of RLS. On the other hand, every night since I've been on selegiline I have woken abruptly at around 5am with a recollection of a dream. Normally, I have no recollection of dreaming. Fortunately, it has not been difficult to go back to sleep.
I have also noticed a significant reduction in the essential tremor that affects my hands and legs.

 
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Old 04-24-2013, 06:36 AM   #13
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Re: selegiline for RSL

Quote:
Originally Posted by TopGeek View Post
Just an interim report to say that I have had the last two nights of deep sleep without any signs of RLS. On the other hand, every night since I've been on selegiline I have woken abruptly at around 5am with a recollection of a dream. Normally, I have no recollection of dreaming. Fortunately, it has not been difficult to go back to sleep.
I have also noticed a significant reduction in the essential tremor that affects my hands and legs.
Hi,

I'm glad that its helping both with your RLS and your hand tremors. The dreaming part is interesting. I always dream but I also never recall waking up due to RLS. I know I don't sleep well for a number of reasons but never knew I had RLS until I had the sleep study. Anyways, I'm glad its helping you. I don't think I"m going to go on Selegiline. I am too concerned about the potential interactions. So I'm trying to find another sleep specialist to get a second opinion.

Good luck and take care.

 
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Old 04-24-2013, 11:42 AM   #14
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Re: selegiline for RSL

Interesting. I have never been disturbed by RLS during sleep but it prevents me dropping off, sometimes for hours. It also bothers me in the evening while relaxing. That is, I believe, classic RLS. It sounds like your diagnosis is somewhat different. I'm no expert but it sounds more like PLMD (Periodic Limb Movement Disorder). It sounds like a good idea to get a second opinion

 
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Old 04-24-2013, 04:19 PM   #15
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Re: selegiline for RSL

Quote:
Originally Posted by TopGeek View Post
Interesting. I have never been disturbed by RLS during sleep but it prevents me dropping off, sometimes for hours. It also bothers me in the evening while relaxing. That is, I believe, classic RLS. It sounds like your diagnosis is somewhat different. I'm no expert but it sounds more like PLMD (Periodic Limb Movement Disorder). It sounds like a good idea to get a second opinion
Hi

I think you maybe right - it is PLMD. I've been looking into RLS and I don't think I have many of the symptoms that are associated with true RLS. I don't recall how the doctor described it, so to be fair to him I shouldn't say that he diagnosed it as RLS. I am waiting to get a final copy of the sleep report, hopefully soon.

But I am glad that the selegiline is helping you. Again, thanks for all of you comments.

 
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