Pramipexole to move on or not to move on

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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Jrfec
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Pramipexole to move on or not to move on

Postby Jrfec » Thu Mar 03, 2016 5:27 am

I am looking for some opinions on my particular experience with Pramipexole. I have a severe case of RLS and have been on the drug for 16 years. My symptoms would most accurately be described as painful. Starting dose was .25mg and it worked extremely well for me. Over the years we have slowly increased the dose and current dose is 2.5mg evenings with another .5 to 1 mg overnight if needed. I have no side effects and have an active job so I never have daytime symptoms to worry about. I see a neurologist recommended on this website and his stance is that we should continue to increase the dose of Pramipexole rather than try other options because I tolerate it well, it's still working for me, and the dose while higher than recommended for RLS is far below the maximum safe level. He says there is not a concern for habituation with this drug at this level which is contrary to much of what I am finding on this discussion board.

So my question is should I continue down this path or should I get a new doc or further question my current one? I'm very concerned about continued use of the Pramipexole at Steadily higher doses. What should my next plan of action be?

Really looking forward to some feedback here. Thanks in advance.

Rustsmith
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Re: Pramipexole to move on or not to move on

Postby Rustsmith » Thu Mar 03, 2016 10:21 am

You are experiencing Augmentation. That is what is driving you to higher and higher doses of pramipexole. So take a look through our discussion forum on Augmentation. I would also suggest that you take a look at the RLS Foundation's video on Augmentation at https://www.youtube.com/watch?v=WWNjV60l0_c&feature=youtu.be

Your doctor is correct that higher doses are allowed by the FDA, but these limits are intended for the treatment of Parkinsons and not RLS. So, although the use of 1mg/day is not "unsafe", because you are augmenting, at some point you are going to have to get off of pramipexole. The higher the dose at that time, the worse the problems that you will have during "withdrawal" from it and the longer it will take.

So, the decision is one that only you can make. Do you follow your current doctor's advice and continue augmenting with increasing doses that will complicate and extend the problems that you experience when you ultimate have to quit or do you find a doctor who understands augmentation and is willing to help you through the hell that you will experience if you quit now.

I should add that I am also currently taking pramipexole at near your levels. I am seeing a new doctor in a little over a week and hope that she will be willing to help me to transition to one of the opiates. If she won't, I will start working to find a doctor who will.
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.

Jrfec
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Joined: Thu Mar 03, 2016 2:01 am

Re: Pramipexole to move on or not to move on

Postby Jrfec » Thu Mar 03, 2016 11:33 am

Thank you for the response. It sounds like I'm in for an uphill battle but am feeling heartened to have somewhere to go for some answers at least. Life is a journey I guess..

ViewsAskew
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Re: Pramipexole to move on or not to move on

Postby ViewsAskew » Fri Mar 04, 2016 9:09 am

I'd agree complete with Steve. This is classic augmentation. All other issues aside, it will just get worse over time.
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.

Jrfec
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Joined: Thu Mar 03, 2016 2:01 am

Re: Pramipexole to move on or not to move on

Postby Jrfec » Fri Mar 04, 2016 11:07 am

Thanks again for the feedback. I called the doc and explained my concerns with augmentation and my worsening symptoms. He has suggested we add Tramadol 50mg in the evenings and if that goes well he wants to lower the dose of Pramipexole. But...I have only ever been on Pramipexole, tried Requip but got nautious, so does it make more sense to try the third dopamine inhibitor (patch)? First and see if it works? Maybe there will be a stretch of time before it starts to augment my symptoms? If it does work I may be able to wean off or stop the Pramipexole cold turkey. Does this make sense? Feels like I need to figure this out on my own and then try to get the doc to go along with it.

Rustsmith
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Re: Pramipexole to move on or not to move on

Postby Rustsmith » Fri Mar 04, 2016 11:28 am

There is a bit of logic to trying the Neupro patch, but because you are on a high dose of pramipexole it might not work too well. The patch provides a constant stream of dopamine to your system so that it avoids the dopamine highs and lows in your bloodstream when you are using pills. The idea is that this helps to reduce the chance of augmentation. Your problem could be that you would need to start with a high concentration Neupro patch just to maintain control.

My personal experience is that I switched from 0.5 mg pramipexole to a 2mg patch. Over the next 15 months I gradually stepped up to a 4mg patch. When I augmented on the Neupro after 15 months, I started working to switch to something else. That journey has been going on now for 9 months.

One additional caveat is price. Generic pramipexole is cheap. The Neupro patch may max out the co-pay of your insurance and if you don't have insurance, it will probably be beyond your means.
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.

Jrfec
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Joined: Thu Mar 03, 2016 2:01 am

Re: Pramipexole to move on or not to move on

Postby Jrfec » Fri Mar 04, 2016 12:21 pm

is there any chance that if I switch off of the Pramipexole onto say Neupro or Lyrica for say a year that then I could switch back onto the pram at a lower dose? I have excellent insurance so not worried about costs.

Rustsmith
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Re: Pramipexole to move on or not to move on

Postby Rustsmith » Fri Mar 04, 2016 1:20 pm

Generally, the current recommendation is that once you have augmented on two different dopamine agonists, that you should not go back on a DA because there is a very good chance that you will augment again very quickly. Since you have only been using pramipexole, it would make sense to try Neupro out. If you can get another 16 yrs out of Neupro, then great. I lasted for 12 months on pramipexole and then 15 months on Neupro before I had to quit each of them due to augmentation.

There also appears to be a bit of a shift in thinking that is occurring. The shift is a move toward combined therapies that use more than one medication to maintain control. This allows lower doses of each med to be used. Another approach being tried is to switch meds every couple of days so that you do not reach to point where augmentation starts. So, in both these cases you might be able to use pramipexole as one of the meds.

As for Lyrica, that is a completely different class of drug and it is not a DA. It would also be worth giving a try. It works for some and not for others. Gabapentin and Horizant are in the same class (alpha-2-delta ligands) and both are also used to treat RLS. Some have problems with side effects on one of these but not with another. So if you tried Lyrica and it did not work, you should still try gabapentin or Horizant.
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.

Stainless
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Re: Pramipexole to move on or not to move on

Postby Stainless » Fri Mar 04, 2016 8:20 pm

Is anyone out there taking a DA and Gabapentin, one at a time or alternating, with success?

Rustsmith
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Re: Pramipexole to move on or not to move on

Postby Rustsmith » Fri Mar 04, 2016 10:52 pm

I am taking them simultaneously. I take pramipexole spread several times through the day to control my urge to move RLS symptoms and I take 900mg of gabapentin 30 minutes before bedtime to address that part of my insomnia that keeps me from falling asleep. Unfortunately, the gabapentin wears off after about 4 to 5 hrs and that is all the sleep that I get.
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.

ViewsAskew
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Re: Pramipexole to move on or not to move on

Postby ViewsAskew » Sat Mar 05, 2016 12:33 am

Take what you can from my story.

I augmented fast - within 10 days - on pramipexole. Didn't know what is was, neither did the doc, so the short story is 18 months later I used it 24 hours a day and rarely slept.

I augmented immediately on three other DAs.

Switched to opioids. Over the years, I had tolerance and other side effects.

I started alternating DAs with opioids. Still do, several years later. For years I never took a DA more than 3 days so I wouldn't augment. But, a year of so ago, I had 2 iron infusions. My serum ferritin was 16 on the first check and 8 on the second (more than ten years ago). Oral iron only increased it to 35ish. After the infusions, I found I could tolerate the DA for 3 weeks (it's the longest I've tried so far) without issue. My goal is to get 1-2 more infusions (I had a 45% reduction in symptoms after the second - but it didn't last long), then see if I can stop all drugs for a short time and see what my true baseline is.

I think most of us could easily try from 1 week to 2-3 months of a DA, followed by a break with either an opioid or an alpha 2 delta drug, such as gabapentin. We'd likely never augment if we did. As Steve said, however, sometimes we need the combine therapy for other reasons. The DAs cause me to awaken frequently during the night - after 3 to 4 hours sleep, I awaken with increased frequency until I'm waking up every 2-3 minutes. That doesn't make me rested at all! So, I use either an opioid or an alpha 2 delta drug to help me stay asleep.
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.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Pramipexole to move on or not to move on

Postby Yankiwi » Sat Mar 05, 2016 1:28 am

I take one .25mg ropinerole two hours before bed and a 50mg Tramadol at bedtime. I don't know if the Tramadol even helps at all. I take another Tramadol when I wake up as long as it isn't too soon after going to bed. That Tramadol gives me a brief wave of nausea so I know it is at least doing something, but maybe not what I want. Dr B., via email, suggested one or two Tramadol for car rides and movies but it didn't help at all so now I use codeine for those situations.

Jrfec
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Re: Pramipexole to move on or not to move on

Postby Jrfec » Sun Mar 06, 2016 12:57 pm

Updating on my original thread. I have been able to lower my dose of pram to 1.5mg the last two nights by taking the 50 mg Tramadol in the evening. Hoping in a couple of weeks I can try to further reduce the pram to 1mg and then I have an appointment with the doc in April and am going to try to convince him to let me try either Neupro patch or maybe Lyrica and either go off the pram completely or alternate with the new drug if it works for me. Hoping the doc will be willing...will keep updating the thread so maybe it helps someone else...

ViewsAskew
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Re: Pramipexole to move on or not to move on

Postby ViewsAskew » Sun Mar 06, 2016 8:31 pm

Thanks for the update. I found it wasn't too hard to reduce my dosage - it was stopping it that was very hard. Most of us find that when we stop it that the symptoms increase dramatically (in duration and in intensity). Nothing like I've ever experienced. Some of us find it's milder, fortunately, than others, so we can hope you'll be in that category!
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.


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