New, first rx for pramipexole, not sure about it.

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HKJB
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Joined: Tue Dec 20, 2016 11:14 am

New, first rx for pramipexole, not sure about it.

Postby HKJB » Tue Dec 20, 2016 4:09 pm

Hi everyone,

I'm new to the community and am looking for some insight on prescriptions. Some background : I'm 46 and I think I've had RLS for years, on and off, but in the last month it's gotten quite bad. Keeps me up all night, which is having a pretty severe effect on work and home during the day. I am starting to have symptoms during the day now - but only when I'm sitting or not moving. Symptoms are the usual - MUST move my legs, buzzing/tingling/crawling, really uncomfortable, some relief about the time I have to get up in the am! I also have MS, so the whole not sleeping thing is certainly not helping with the fatigue from that! I'm currently participating in a drug trial for MS, which is going really well.

I'm lucky that due to the drug trial I have great access to neuros. Last time I went for a check in for the trial (10 days ago) I told the neuro about the not sleeping. She prescribed Mirapex. Being the type A that I am, I went home and researched it. Scary! I'm particularly concerned about the compulsive part. I have a tendency to become compulsively addicted to stuff (not drugs, etc.) but have had problems controlling my access to video games, technology, Internet. So I am thinking this drug may be a really bad idea.

What do people typically start on? Is there something less "drastic"? BTW out of desperation last week, I took one of my husband's zopiclones and slept like a baby. Has anyone had success with just sleeping meds?

Any comments would be appreciated as I start my journey down this road...

Cheers,
Holly

stjohnh
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Location: Palo Alto, California

Re: New, first rx for pramipexole, not sure about it.

Postby stjohnh » Tue Dec 20, 2016 4:35 pm

Holly, I'm sorry you're having trouble with your RLS. There is generally speaking no wonderful treatment for RLS. You have probably found out that there are several drugs that are used, all have significant side effects or are minimally effective or both.

Standard sleeping medications usually are ineffective or minimally effective for people with RLS. Gabapentin and medical marijuana seem to help sleep problems not related to jumpy legs.

You have fairly severe RLS judging by your description of symptoms, pramipexole (mirapex in USA) is likely to be the most effective for you at this point. There is no question that there may be significant problems down the road, however many people get years of relief from mirapex and similar dopamine agonists. The important things to remember are do not escalate the dose without very good reasons. Also do not try to completely eradicate your symptoms, as that will likely increase the likelihood of augmentation.

Dopamine agonists like pramipexole are usually the first drugs used to treat RLS. The compulsive behavior problem is not serious for most people, however there have been reports of serious problems. Keeping the dose low and if you have someone that you live with, ask them to be on the lookout for any tendencies toward compulsive behavior. Addiction to drugs and gambling are the ones that are the most serious in terms of life-altering problems.

This site is by far the best source of information available for RLS, but also remember that bulletin boards like this generally attract people that are having problems and that people that are doing well usually don't post reports. You can get a skewed opinion as to problems by reading the posts here. Be sure and discuss your concerns with your doctor. The moderators here are very good at reminding people about what's really important.
Blessings,
Holland

Rustsmith
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Re: New, first rx for pramipexole, not sure about it.

Postby Rustsmith » Tue Dec 20, 2016 5:25 pm

Welcome to the board Holly.

You are fortunate to have easy access to good neuros. That is often one of the hardest parts about finding an effective treatment for your RLS.

As Holland indicates, compulsion problems are not common, but they can occur. Have your husband monitor you and warn him that you if you are affected, you may try to hide it from him. If he suspects something, it is best to catch it early. But this is definitely not a reason to avoid pramipexole. It is highly effective when you are just starting out. If it doesn't resolve most of your symptoms almost immediately, then they are probably not RLS. And as Holland points out, use the lowest dose possible with a goal of resolving about 90% of the symptoms. This will help delay the issue of augmentation, which can occur after a period of time that varies from person to person.

If the issues with pramipexole still concern you a lot, you could also talk with your doctor about trying gabapentin. This helps the movement issues for some people and addresses the sleep issues for many of us better than sleep aids like zopiclone. It might even have some benefit for some of your MS symptoms if you are having neuropathy.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

HKJB
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Joined: Tue Dec 20, 2016 11:14 am

Re: New, first rx for pramipexole, not sure about it.

Postby HKJB » Tue Dec 20, 2016 5:49 pm

Thanks Holland and Steve - good points! I am going to have another discussion w my neuro and if she still thinks Mirapex is the way to go I will give it a try. I REALLY need to sleep. Plus I am becoming "no fun mom" which is no good :(

I'll report back, good or bad.

Holly

stjohnh
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Location: Palo Alto, California

Re: New, first rx for pramipexole, not sure about it.

Postby stjohnh » Tue Dec 20, 2016 8:26 pm

HKJB wrote:... BTW out of desperation last week, I took one of my husband's zopiclones and slept like a baby...


Holly, sorry I missed the fact that you are married. This illustrates one of the problems many of us with RLS have, cognitive deficits due to chronic sleep deprivation. I read your post twice and still it didn't connect in my brain that you are married. ...such is the life of many of us with RLS.
Blessings,
Holland

HKJB
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Joined: Tue Dec 20, 2016 11:14 am

Re: New, first rx for pramipexole, not sure about it.

Postby HKJB » Tue Dec 20, 2016 8:34 pm

Hi Holland - no worries. I left the house this morning and went to my dentist instead of my eye doctor... Sleep is a great thing when you can get it :roll:

stjohnh
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Location: Palo Alto, California

Re: New, first rx for pramipexole, not sure about it.

Postby stjohnh » Tue Dec 20, 2016 8:45 pm

Holly, It sounds like you already have the prescription for pramipexole. It is not expensive. Why not fill it and start taking it while you are waiting for info from your neurologist. You can always stop it if you decide it is not the best option for you. You can tell your pharmacist you only want 10 tablets if you are hesitant to fill the complete amount.
Blessings,
Holland

badnights
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Re: New, first rx for pramipexole, not sure about it.

Postby badnights » Wed Dec 21, 2016 3:43 am

Hi HKJB
Using sleeping meds alone usually does not work well. The WED/RLS symptoms override the effect of the sleeping meds so you end up with a sleeping brain but a walking awake body - not a pleasant combo.

As for Mirapex. in an ideal world -in my opinion- you would avoid it, given your known issues with compulsive behavior. I would talk to your neuro when you see her again and specifically discuss that concern. As Holland says, problems with compulsive behavior due to pramipexole/Mirapex are relatively uncommon; but when they do occur, they are generally devastating, and you are susceptible to those problems - two reasons to have a thorough discussion with your neurologist about your options.

The other options all have problems, too, but you might want to consider some ideas.
  • The other dopamine agonists (DAs) (ropinirole/Requip and rotigotine/Neupro) have the same potential side effect of compulsive behavior as pramipexole, but you could ask your neuro to investigate if one of them has a lower incidence of it. Pick that one instead of pramipexole.
  • Gabapentin encarbil/ Horizant and the other anti-convulsants tend not to be effective enough on their own, but they might be worth a try in this case. If Horizant alone is not effective, you could combine it with a DA, which would keep the DA dose lower than if you were taking just the DA.
  • Finally there are the opioids, a large selection to choose them. They probably have the lowest side-reffect profile of the three classes of meds used for RLS/WED. However, doctors are gun-shy about prescribing them because of the (somewhat misguided) fear of abuse. The Foundation hosted a webinar on opioids and WED/RLS which you might want to point your neuro to (http://willis-ekbom.org/member-portal/webinars - scroll to Opiates and RLS. You have to be a member to view, but it's really informative and worthwhile).
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

JimmyLegs44
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Joined: Thu Oct 01, 2009 5:24 am

Re: New, first rx for pramipexole, not sure about it.

Postby JimmyLegs44 » Wed Dec 21, 2016 2:35 pm

I know you are suffering now, but I would put a great deal of thought (I'm sure you have already) into going on meds. You indicated you've had RLS "on and off" for years and it's gotten quite bad in the last month. Has anything changed in the last month to cause this flare up? It could be any number of things. If you go on drugs, and they help, then you'll likely be on drugs indefinitely, even when this current flare up goes away (which it certainly could on it's own, eventually).

I was in your situation about 20 years ago (I'm currently 47), and went on drugs, including Mirapex for 13-14 years. Even at a relatively low dose of Mirapex (.375 MG), I augmented quite severely and had a hellish experience during withdrawal. I just dealt with the augmentation for several years, because I knew the hell that awaited me if I stopped the drug. Dopamine agonists are a temporary solution at best, and most of the RLS experts do not consider DA's to be the best first-line treatment anymore. I feel like I lost a year of my life during the withdrawal.
The best way out is always through. - Robert Frost

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New, first rx for pramipexole, not sure about it.

Postby stjohnh » Wed Dec 21, 2016 11:30 pm

JimmyLegs44 wrote:...most of the RLS experts do not consider DA's to be the best first-line treatment anymore...


JimmyLegs, What do the experts consider the best first-line treatment?
Blessings,
Holland

ViewsAskew
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Re: New, first rx for pramipexole, not sure about it.

Postby ViewsAskew » Wed Dec 21, 2016 11:48 pm

Holland, many of the docs have switched to the alpha 2 delta ligands for first line. The risk of augmentation and its associated costs are not to be considered lightly.

That said, I just don't see gabapentin and the like being able to resolve symptoms for everyone, so some are going to have to move to DA, which would come next.

I also wonder if DAs couldn't be managed differently. Few would augment if those drugs were used for awhile, then stopped, then started again. A person could take DAs for a few months, then take 2-3 weeks off using an opioid, then go back. Unlikely, though, because it's hard to manage.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New, first rx for pramipexole, not sure about it.

Postby stjohnh » Thu Dec 22, 2016 2:43 am

Thanks Ann, seems like I don't see many posts from folks that have had good results from gabapentin/Horizant/Lyrica. I didn't realize most experts have relegated DAs to second line therapy.
Blessings,
Holland

ViewsAskew
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Re: New, first rx for pramipexole, not sure about it.

Postby ViewsAskew » Thu Dec 22, 2016 3:41 am

It's relatively new - say last year. Have only read it in two places that I can remember. The evidence based guidelines I read last week seemed to indicate that one of those was best and the other two not so much. I can't remember...I posted the article after I skimmed it.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

JimmyLegs44
Posts: 83
Joined: Thu Oct 01, 2009 5:24 am

Re: New, first rx for pramipexole, not sure about it.

Postby JimmyLegs44 » Thu Dec 22, 2016 2:19 pm

I've switched to Lyrica (150 mg/night) per Dr. Silber at Mayo. During my appointment last November, he indicated they'd had a lot of success switching augmented RLS patients over to Lyrica. After a year on Lyrica, I would say my sleep is as good as it was when I was augmenting on Mirapex (up an average of 2-3 times/night for about 15 minutes per wakening, but still able to get sufficient sleep...avg 7.5 hours/night). It was a long road here, though, with many bumps along the way, and more to come I'm sure.

The biggest benefit of getting off Mirapex, though, is that now I have zero daytime symptoms. During augmentation, I'd get symptoms starting as early as noon and lasting on and off the rest of the day and into the night. Since I have a desk job, the daytime symptoms were excruciating, and it was maddening to know it was all caused by the drug itself.

I still plan on doing an annual drug holiday of about 2-3 weeks to see if I can bear being off drugs. The drug holidays from Lyrica are not anywhere near as hellish as a drug holiday from Mirapex. Not even close. Anyway, I'm hopeful that one day I will be drug-free (except beer of course :) ).
The best way out is always through. - Robert Frost

stjohnh
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Location: Palo Alto, California

Re: New, first rx for pramipexole, not sure about it.

Postby stjohnh » Thu Dec 22, 2016 5:20 pm

JimmyLegs44 wrote:I've switched to Lyrica (150 mg/night)...The biggest benefit of getting off Mirapex, though, is that now I have zero daytime symptoms. During augmentation, I'd get symptoms starting as early as noon...


Thanks for the info. How much daytime sleepiness do you have? Fatigue?
Blessings,
Holland


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