Restarting pramipexole

[sleepless-in-seattle]

I started taking pramipexole 9 years ago at .125mg/night. It worked great but over time I had to keep bumping up the dosage for it to be effective. When I reached .75mg/night I went into severe augmentation. With the help of opioids, I was able to taper totally off of it over the course of a year. I've been totally off it for the past year now but other things I've tried have not worked well. So, I'm considering going back on pramipexole now that my body has 'reset'. Is it safe to do this at very low dose (.125mg)? Will I go back into augmentation much faster this second time around? Has anyone out there tried this?

[Pippins2]

Hi yes I tried it but got augmentation within weeks. If you are going to go back on adopamine agonists after a years break I would consider Neupro patch as it has the lowest rate of augmentation. I would stick to the lowest dose of 1mg and supplement with a low dose opiate. This combination has enabled me to stay on 1mg Neupro for over 6 years. .I would also recommend short breaks off the patch (I take 2 /3 weeks off every 3 months ) During the break I increase my opiate and get prescribed 14 sleeping pills to help

Also make sure your ferritin is over 100

An alternative would be to try Gabapentin or Pregablin with a low dose opiate med

Good luck x

[Pippins2]

Unfortunately if you are in the States as your name suggests then the Neupro patch is very expensive but I have known others there mention ways to get it cheaper x

[sleepless-in-seattle]

Thanks Pippins2. Yes Neupro patch is very expensive over here, over $700/month and Medicare Rx programs only cover about 1/2. I've tried Gabapentin in conjunction with low dose Methadone but they only work for a few weeks before I have to up the dosage. I was hoping I could get another 5-6 years with pramipexole before having to face augmentation again. I guess I need to keep looking for other options.

[Mafopp5]

I tried “Cold Turkey” by stopping pramipexole altogether a week or two ago. Bad choice! Thought I was going to die at one point late in the night. I have discovered that by slowly reducing the amount it is more effective again, so I am back on 2x .008 tabs 2 hours before bed. If I get a problem in the night I occasionally take one more .008 tab. I’ m afraid to say that, contrary to advice, I seem to be better after a dinner when I have had a few glasses of wine. I know this isn’t right, so I will have to try to find a doctor who understands RLS and get some advice on alternatives. It is not easy to find anyone in the medical profession here in the UK who even knows what RLS is!

[Kcay]

Caseyca.....Hello Seattle. Iv'e been on Pramipexol for 12 years started .25mgm/day then 0.5Mgm/day then and now for the last 7years 0.75mgm/day. Excellent results no augmentation. Occasionally if something triggers a bad attack I take 1mgm/day.

Always 2x @ approx 3pm then 1 on retiring. Its a peculiar affliction, if I am engrossed in something and forget the 3pm dose, no problems until until I remember at say 8pm and within a few minutes it starts as soon as I relax or lay down. Then I take the 3 x .25mgm at once and it takes about 45mins to stop the RLS.

If you have augmentation why not use tramadol or another proven drug for 2 months, so .

Check with your doc about changing straight onto Tramadol.

[sleepless-in-seattle in reply to Kcay]

Thanks Kcay. I'm not in augmentation now but was for most of 2017. I tapered off of it slowly and have been off it totally now for a full year. My question is: if I go back on Pramipexole will I reach augmentation much faster the second time around? It took 9 years for me to reach augmentation the first time. Nothing I've tried since has been anywhere near as effective as pramipexole, so I'd like to try it again. But I don't want to do so unless I can get at least 5-6 years without the risk of augmentation.

[Hidden in reply to sleepless-in-seattle]

Hello! I wish we could give you a sure-fire answer to your question, but we can't. It's trial and error I'm afraid. Everyone has different experiences, so it could be that you'll be fine. But....if you go back on it and do end up augmenting, I'd hate for you to go through the pains of withdrawing from it (especially since you already know how bad it can be). It is so frustrating not knowing, isn't it?

I wish you luck in figuring out what works for you!

[involuntarydancer]

Hi Sleepless, I have done exactly what you are considering. I resumed pramipexole at a very low dose about 18 months after discontinuing it due to full blown augmentation. In the meantime I tried all the other mainstream meds and a few other options such as Kratom and cannabis. For one reason or another, none of them afforded me anything like as good cover as pramipexole.

I reintroduced one half of the lowest dose tablet. That would be half of your 0.125. At first I took it only for 5 days each week to reduce risk of augmentation. More recently I am taking it every day. I took a longer break from it over the summer (about 3 weeks). So far it affords me reasonable coverage. Some days (nights) are better than others. I think the dose is a bit low for my rls but I’m too afraid of augmentation and don’t intend to increase from this dose. My plan is to discontinue it if I get even a whiff of augmentation. Sometimes I use Kratom to boost the effect when I really need good sleep. Or I sometimes take solpadeone which contains a low dose of codeine. I also take dipyridamole and ldn which both help with daytime tiredness and I am almost finished a long slow withdrawal from lyrics (am currently taking 10mg so next step is to stop altogether - maybe next week).

Neupro didn’t work for me. It just didn’t seem to have much impact on my rls.

I make sure that my iron is as high as I can get it as there is a documented link between low iron and augmentation.

In your shoes I would give it a try at half of 0.125 initially. I suppose you could try taking a whole tablet if half doesn’t work but either way stop it immediately you experience any sign of augmentation. Would you consider using a small dose of one of the other drugs to boost coverage? In my experience rls responds better to low dose of a cocktail of drugs.

[sleepless-in-seattle in reply to involuntarydancer]

Thanks involuntarydancer for your insights and recommendations. Our situations sound very similar. I've been leaning toward a very low dose reentry into the Pramipexole world maybe only taking it every other day and watching closely for any signs of augmentation. At least that way I'll get a good night's sleep every other night and maybe forestall augmentation. I'll try some of the things you recommend on the off nights to try to get by. Again your feedback is very much appreciated.

[involuntarydancer in reply to sleepless-in-seattle]

Good luck, s-in-s. I’d be interested to hear how you get on.

[sleepless-in-seattle in reply to involuntarydancer]

I hope you don't mind my asking a few follow up questions:

1. What did you use to taper off of pramipexole once you were in augmentation and how long did it take you to get totally off of it?

2. How long have you been restarted with pramipexole?

3. Can you tell me what works best for you during your off nights from pramipexole?

4. Do you take a sleeping aid? If so, which one? And how well does it work for you?

5. Lastly, do you take an iron supplement? If so, which one? I had a Dextran iron infusion last year and ever since then my ferritin level has been around 168. I know some docs feel that it should be over 200 for it to help with RLS. But they won't approve another infusion so I'm thinking that maybe I can raise it with supplements.

Thanks again.

[involuntarydancer in reply to sleepless-in-seattle]

I will start with backwards. I take iron bisglycinate 20mg tablet on empty stomach. Your levels are a lot higher than mine (last measured mine at 68). I have ordered iron patches from patchmed as Julesg suggested them but they haven’t arrived yet.

I found sleeping pills made everything worse so don’t take them but do use cannabis (whole bud made into an edible) occasionally and it generally gives a good sleep. Mostly I sleep ok if my symptoms are controlled and I haven’t taken an opioid.

I haven’t taken a break from pramipexole since August. Typically the nights off pramipexole were always difficult. I used Kratom which worked ok but I have a fairly high tolerance so need quite a lot to cover symptoms which leads to dopiness next day and relatively rapid physical dependence (though generally Kratom is relatively easy to withdraw from).

Even on the days I do take pramipexole my symptoms are not wholly covered. Recently I have been taking 2 solpadeine (contains 16mg codeine). This seems to help a lot. I have a lot of OxyContin stockpiled from a while ago so am thinking of alternating between codeine, Kratom and OxyContin to avoid developing tolerance/dependence on any one of them.

If woken in the night (which is quite often) i also do stretches, apply magnesium rub, drink a cup of coffee and often just pace the boards.

When I was coming off pramipexole originally (in 2016) my sleep consultant recommended a gradual withdrawal (I was on about 2.8mg - US measurements) and prescribed pregabalin but refused opioids. Pregabalin didn’t work. I started reducing at beginning of April and finally eliminated in about July. I had a truly awful time with virtually no sleep for about 3 months. Eventually my GP prescribed oxycontin which kickstarted a recovery. I have been on a journey since then trying to find a workable regime.

I resumed pramipexole in February this year and have been on the same dose since then. As I said I took it 5 days out of 7 for the first 6 months. Then took 3 weeks off (that was tricky) and now am taking it full time but will take a week or so off in next month or two - May have to wait til Christmas.

How is it going for you?

[sleepless-in-seattle in reply to involuntarydancer]

Thanks so much again involuntary dancer. We are/have been on amazingly similar paths. Nice to know we're not alone fighting this horrible disease.

I went into severe augmentation in January 2017 after 9 years on pramipexole and went through 10 months of slowly tapering off. At first I tried going off of it cold turkey and quickly went into convulsions. I honestly thought I was going to die! So I went to plan B - a slow taper. I too had a stockpile of oxycodone which that, along with some cannabis vapor (granddaddy purple), were the only things that got me through. Even then I got very little sleep and walked the floors several times each night. After I finally shook the beast, I went to a local Neurologist who recommended I go back on pramipexole. Yikes! I wasn't going right back down that rabbit hole after going through pure hell for 10 months. With all the bad publicity around opioids, he wouldn't prescribe any for me. Obviously he didn't understand RLS and what an RLS patient goes through.

Through the RLS Foundation, I learned of a RLS specialist in the LA area (none in Seattle) so went to see him in Downey, CA (Dr. Mark Buchfuhrer) in January of this year. He put me on Gabapentin and low dose Methadone. This worked really great initially. I actually felt that I finally had my life back. But slowly I had to keep upping the dose (sound familiar?) and by October it had gotten to levels I felt very uncomfortable with. That's when I decided to try restarting pramipexole. Dr. B. wasn't in favor of that. He said that after having taken pramipexole for so many years, I would reach augmentation very fast. But he had no other option for me except Neupro which is totally unaffordable with my retirement budget.

So now I'm tapering off methadone and gabapentin (which has it's own set of side effects for me - mainly flu like symptoms every day) and adding low dose pramipexole back in. I'm taking it every other day and getting almost no sleep on the off nights. Hence the reason for some of my questions. I too am going to be vigilant with sticking to a low dose and watching for the first signs of augmentation. Not sure what I will do if that happens. Back to low dose methadone maybe.

I'm not familiar with some of the other things you are taking so will Google them to see if they might work for me. I agree that a cocktail of things may be the best solution. If there was just some way of upping the dopamine levels in our brain at night without the risk of augmentation. That would seem like the ideal!

[involuntarydancer in reply to sleepless-in-seattle]

Dr. Buchfuhrer is one of the most knowledgeable practitioners regarding rls working today. He is also incredibly generous with his time - answering email queries from sufferers around the world free of charge and usually within 24 hours.

However, he tends to be dead against reintroducing pramiprxole (he responded to an email question of mine advising against it). He also does not favour Kratom which affords much relief to many and tends to be less horrendous to discontinue than pharmaceutical opioids. This is understandable I suppose as it is largely unregulated and not widely studied for therapeutical benefits and consequently not very well understood.

I think the world of Dr. B. But if I had followed his advice I think I would be on the highest dose of OxyContin now, using a cpap mask and struggling to gain sleep due to ‘alerting’ caused by the opioid. I would probably also be slightly zombified during the day due to a large dose of pregabalin. I would ultimately be facing a horrendous withdrawal from OxyContin. While I would hesitate to recommend it to anyone else, I’m not sorry I chose my own path.

[involuntarydancer in reply to sleepless-in-seattle]

Incidentally, the rls foundation was funding a study into the use of a drug called ecopipam to combat augmentation in dopamine agonist users. I can’t recall when the study was to begin. Sometime this year I think. Wouldn’t it be great if they found some way of reversing augmentation?

I also read an account of one man who found all his signs of augmentation were reversed when he was put on a high dose of naltrexone. He felt the naltrexone also solved some impulse control issues he was experiencing caused by the pramipexole. I am taking low dose naltrexone at the moment so maybe that is helping reduce the chances of augmentation.

[sleepless-in-seattle in reply to involuntarydancer]

Yes, I think going down your own path is a wise decision. After all many of these drugs work differently for different people. Unfortunately it's kind of trial & error. We have to do the research and be willing to try different things. I agree Dr. B. is helping many RLS sufferers to a much better life and is very responsive. But while methadone has worked for 70% of his patients, it hasn't worked for me.

What do you use Kratom for, and do you have any side effects?

Have you heard of a natural supplement called Dopa Mucuna? Apparently Mucuna is one of the only naturally occurring sources of L-Dopa which apparently crosses the protective blood brain barrier. The NOW product (from Amazon) contains 120mg of L-dopa per serving. I'm all for natural products instead of pharmaceuticals but most have no solid science behind it. But may be worth a try. I started using it yesterday and will let you know if it helps me.

Thanks for letting me know about the ecopipam trial. I'll watch for the results. It would be a miracle if it really does reverse augmentation.

[involuntarydancer in reply to sleepless-in-seattle]

I tried a product called mucuna pruriens which I got in a health shop. It is derived from the mucuna plant. One poster on here living in ?Costa Rica (I think) actually grows the plant for consumption for his rls. He said the whole plant was helpful but general consensus was that the suppplement only helped a minority (at best). It didn’t do much for me that I noticed. I also wondered whether as it is effectively a dopamine agonist it could also lead to augmentation eventually. You might find more info if you put it in the search bar.

I found Kratom very helpful for my rls (it gets rave reviews from many posters but is understandably viewed with caution by others as it is not widely legal and even where legal is not regulated like other consumables). Again you’ll get a lot of info if you put it in the search bar on here.

I take about 1.5/2 tsps dissolved in grapefruit juice and it quiets the legs. It also induces a pleasant low level euphoria. The effects wear off after about 4 hours. It does induce a level of physical dependence but much less significant than other opioids and withdrawals generally only last about 3 or 4 days (though unfortunately I tend to suffer a longer withdrawal as my body starts to experience repeated panic attacks - at least I think they’re panic attacks - that carry on for a few weeks after I discontinue Kratom or any opioid - which acts as a deterrent from using it too regularly).

For side effects, yes I would say I was more tired and washed out the following day but it was reasonably manageable. In general I just find that I don’t cope that well with the highs and lows that accompany use of any opioid or quasi-opioid substances (apparently Kratom is not a true opioid) but it makes a useful intermittent option in combatting rls for me.

It is great to discuss these things with someone who has had similar experiences and is considering a similar path.

[sleepless-in-seattle in reply to involuntarydancer]

Thanks again i-d. What is your source for Kratom and what form do you use (capsules, powder, liquid, etc.)? There are some nights when absolutely nothing works for me and I'm thinking perhaps Kratom may help.

[involuntarydancer in reply to sleepless-in-seattle]

I use a powder - usually red vein Borneo or red Thai. I dissolve it in grapefruit juice - it’s highly unpalatable. I order it from Holland as I am in Ireland. They post it. In the states you can order it by post from a variety of suppliers. Apparently prices vary. There are some suppliers frequently recommended. If you search Kratom you might find them. I can’t remrmber the names just now.