Neupro or gabapentin encarbil?

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Madmom02
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Neupro or gabapentin encarbil?

Postby Madmom02 » Tue Nov 22, 2016 8:37 pm

So, I'm augmenting on ropinerole. Dose is up to .75mg after starting at .25mg October 6. At .75mg I had some relief at night and in the early am although I still had bouts during the day. As of two nights ago, it's not working at night anymore. Sent my neuro an email and his nurse called and said he's reading some new study about RLS (could it be the IRLSSG algorithm or augmentation paper?) and would like to suggest I try Neupro or gabapentin encarbil (Horizant).

Not sure what to do. I've augmented on sinemet, pramipexole, and ropinirole. Gabapentin makes me suicidal and causes edema. I had drug induced hypertensive crisis level blood pressure for at least a year so my system is sensitive that way. I get rashes from bandaids and the nicotine patch although I tolerated the lidocaine patch.

I have an appointment on Dec 14 at the sleep clinic with a dr who specializes in RLS - in pregnancy. I'm not pregnant but she's the best available. Should I stick it out until then?

Advice requested, please.
Thank you!

Rustsmith
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Re: Neupro or gabapentin encarbil?

Postby Rustsmith » Tue Nov 22, 2016 11:12 pm

If you had mental health issues with gabapentin, you definitely do not want to try Horizant. The modification that was made to Horizant only increases adsorption into the body. Once it is in the blood stream, Horizant turns into gabapentin.

As for Neupro, it evens the dose of dopamine out throughout the day. And yes, it causes skin irritation. Personally, I found that it caused the least problems when applied to areas with tougher skin and that did not move in three directions. I had problems on my abdomen and lower back, but it seemed to work fairly well on my shoulder and upper back (above the shoulder blade area). But if your doctor wants to try Neupro, ask about extended release Mirapex. Both are expensive since they are still under patent. The Mirapex ER takes the same approach as the Neupro, but is in pill form.
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.

badnights
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Re: Neupro or gabapentin encarbil?

Postby badnights » Wed Nov 23, 2016 10:08 am

Don't let go of that Dec 14 appt. Deal with your neuro until then, but the options he (she?) is suggesting don;t seem very promising. Can't tell for sure of course, but you've already augmented on Sinemet and two DAs, so you're probably at a somewhat higher risk of augmenting on Neupro, which is also a DA. But as Steve notes, augmentation is less common (or perhaps just masked) on long-acting DAs like rotigotine/Neupro and pramipexole ER, so perhaps you could have relief on one of those. Personally I would try Neupro since you've augmented on pramipexole, if I had to try either.

I 100% agree with Steve you should not try Horizant. I also experienced suicidal thoughts on gabapentin. Not something to mess with.

There are different lines of thought on dealing with augmentation, which you can probably summarize better than I can at the moment*. If you have the IRLSSG white paper on augmentation, it might be a good idea to take it with you to the Dec 14 appointment, and be prepared to discuss your options. It;s too bad we have no idea if the "pregnancy doc" has any experience with refractory WED or augmentation :(

(*I'll give it a shot: some doctors would prescribe a potent opioid for about 2 weeks after you stop the ropinirole, then start you on a new medication after the withdrawal (the temporarily worsened WED/RLS) is over. Other doctors would have you avoid the opioid, but otherwise approach it the same - more suffering, but they believe an essential re-set happens during withdrawal that does not occur if an opioid is taken. Still other doctors think it best to taper you off the ropinirole while ramping up a new med.)
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

Madmom02
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Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Neupro or gabapentin encarbil?

Postby Madmom02 » Wed Nov 23, 2016 11:42 am

Thank you, Beth and Steve. I'm going to ask for a reset at my December appointment and stay the course until then. I think. It depends on how bad things get with the ropinirole.

The neurologist had suggested before the ropinirole stopped working that I add .25mg in the day. My sleep deprived brain thinks maybe I'll do that first because maybe the dose just isn't high enough. Clearly, I shouldn't be let out in public. :?

Of course, this all may be moot because Medicare.

Sigh.

Two hours sleep this night. Can't wait for the documentary to be released. Maybe doctors will get it then.

stjohnh
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Re: Neupro or gabapentin encarbil?

Postby stjohnh » Wed Nov 23, 2016 11:27 pm

The IRLSSG augmentation white paper basically suggests neupro or gabapentin type meds (like Horizant) for augmentation, so your neuro is following the recommendations. With your gabapentin problems, Neupro is the obvious choice. It does have 2 problems, very expensive and lots of rash problems. I'd try the neupro but tell the pharmacist you only want 7 patches so that you don't end up with a lot of expensive medicine you can't use if you have too much rash. If you fail neupro the IRLSSG protocol recommends methadone or other opioid.

However, you may be able to stop the DA (ropinirole or neupro) for a spell (1-2 weeks) which may enable you to take a DA again at much lower dose without augmentation. To stop the DA you will need opioids at least temporarily, or have a week or 2 of no sleep (I.e. torture).
Blessings,
Holland

ViewsAskew
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Re: Neupro or gabapentin encarbil?

Postby ViewsAskew » Thu Nov 24, 2016 6:29 am

What is your ferritin level? Forgive me for not remembering....and being too tired to go try to find 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.

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Neupro or gabapentin encarbil?

Postby Madmom02 » Thu Nov 24, 2016 6:49 am

Holland, thanks for the suggestion about asking the pharmacist for just seven patches. I'm not sure how that works with Medicare but it's a great idea!

Ann, in August, 22015 it was 115. 0n September 20, 2016 it was 90. I do have familial RLS so would iron make a difference?

Got a feeling I'm not sleeping tonight. Hope everyone else has a quiet night with good sleep.

badnights
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Re: Neupro or gabapentin encarbil?

Postby badnights » Thu Nov 24, 2016 10:16 am

If you're not taking iron supplements, maybe you should, to halt that decline in ferritin. Or if you are, consider adding more. I was taking two 65 mg pills a day but had a few months of worsened symptoms with no relief until I tried adding a third pill. (I don't know what my ferritin was doing because it's hard to convince people to order the test just so I know what's going on. ) I have familial WED, in case you're curious.There is a known link between low ferritin and risk of augmentation but the studies didn't separate people by what type of WED they had. Maybe I've missed a more recent connection between low ferritin and type of WED? but I don;t think it was relevant to augmentation, just to whether efforts to raise ferritin would alleviate RLS/WED symptoms. In other words, unless I;m missing information, you should still be cautious of letting your ferritin drop any further while taking a DA.

What are the signs that you're augmenting on ropinirole? If they're clear and obvious, I suspect - but who can know - that adding a daytime dose will just delay the inevitable. Maybe the delay would be long enough to make it worthwhile? If you're not sure you're augmenting, then it would seem a little more like a good idea to add the daytime dose. My guesses, anyway.
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

Madmom02
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Location: My heart lives in the mountains

Re: Neupro or gabapentin encarbil?

Postby Madmom02 » Thu Nov 24, 2016 6:14 pm

I thought I'd read that iron wasn't the problem in familial RLS but I'm beyond knowing anything these days. :roll: I did send an email to my neurologist last night pointing out the decline and asking if I ought to try supplementing. Since I know he's learning about RLS (yay him!) I think I'll send him info on iron.

His nurse said he's never had a patient with RLS like mine and he knows I'm researching it. I feel empowered, and obligated, to help him so I feel like I can pass stuff on to him now. My first info source I refer him to is going to be rls.org. :) Maybe he could become an RLS specialist! :D

I think I'm augmenting on the ropinirole because it worked for a few nights and then didn't. It's the only augmentation criteria that applies to me because the others are already part of how the RLS has progressed over the years.

I've had early morning, daytime, and early evening RLS (along with the usual circadian rhythm evening onset) since it ratched up in August, before I started the pramipexole.

I've had it in my arms and trunk for at least a couple of years (started when the 3mg clonazepam stopped consistently hiding it).

The RLS has changed from a intense bone tugging sensation (1987, 1990) to an irritating feeling of tiny bugs crawling over my bones (1994-2015) to the current excruciating sense that those bugs are biting me. It started being painful in 2015. Beginning in August it now ranges from a 5 to a 7 on a 1-10 pain level scale (http://www.healthcentral.com/chronic-pa ... 768-5.html) (My back pain makes me throw up and I rate it at an 8-9 for reference).

Maybe it's not augmentation?

legsbestill
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Re: Neupro or gabapentin encarbil?

Postby legsbestill » Thu Nov 24, 2016 9:28 pm

Poor you; you really have it hard. I don't like the sound of those biting bugs at all - mine is still at the crawling bug stage and I fervently hope it remains there.

I started on neupro after augmenting on pramipexole but I had quite a long period (about 4 months) of no dopamine agonist after stopping pramipexole (only pregabalin which was useless and after about three months of hell my php prescribed OxyContin - an opiate). When I first started neupro I was so suspicious of it as a dopamine agonist that I was sure I was augmenting on two or three separate occasions. I'm still not sure because it did seem to work for the first few days and then didn't work but really I think that the 2mg patch was just not man enough for the job. Now I have the 2mg patch and 10 or 15 mg of OxyContin and that currently deals with rls symptoms. I have problems with 'alerting' from the OxyContin and have started to use 50 - 75 mg of pregabalin for that (though obviously that is not much use for you).

I'm not sure whether it is necessary to take a complete break from d/a s after augmentation - it does seem somehow logical to me to get them out of the system. If you did decide to take a break from d/as my experience suggests you will almost certainly need an opiate to get you through it.

Regarding neupro, I am not particularly prone to skin rashes etc and I get an irritating but not unbearable rash from it. It is very expensive. I think it would be helpful for daytime symptoms - I haven't had these since the early days coming off pramipexole and wonder if having a slow release d/a is a bit wasted on me but it would be good for you. Incidentally, I am pretty sure bringing up my ferritin serum levels has had a positive impact on my symptoms.

I really hope you manage to find a solution that works for you.

badnights
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Re: Neupro or gabapentin encarbil?

Postby badnights » Fri Nov 25, 2016 1:40 am

Madmom, I've been trying to piece together your medication history from past posts. You were on Sinemet at one time and augmented, pramipexole recently and augmented, the neruo switched you immediately to ropinirole without a washout period, is that correct? And clonazepam at the same time as the pramipexole?

You could very well be augmenting, but it would be hard to be certain if you never really got back to baseline after previous augmentations. Your symptoms would remain elevated, you would need more ropinirole to deal with them, augmentation on the ropinirole would set in sooner than it would have, and things all kind of merge together. I am very leery of DAs, I admit that, from my own experiences and the horrifying things people here have gone through, and I would tend to think you probably are augmented, possibly still augmented from the pramipexole. You posted a while ago that you felt your symptoms were being worsened by the ropinirole, and you might want to trust that feeling.
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

ViewsAskew
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Re: Neupro or gabapentin encarbil?

Postby ViewsAskew » Fri Nov 25, 2016 8:10 am

For some of the tough cases, the person ends up having multiple things going on. Neuropathy is often confused as RLS, for example. Augmentation complicates it even more.

I think I view augmentation differently from the specialists. One you augment 2-3 times, why try again? I also am not sure I understand why so few docs will try alternating a DA with an opioid after augmentation. 1 week opioid, 3 weeks DA, for example.

I think similarly to Beth - trust yourself. You know your body.
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.

legsbestill
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Re: Neupro or gabapentin encarbil?

Postby legsbestill » Fri Nov 25, 2016 10:38 pm

When I emailed Dr Buchfuhrer, that was one of the options I was considering - pramipexole alternated with an opioid - but he was very unenthusiastic about it - he said that although he did it in some cases 'it does take a higher level of expertise to figure out how to accomplish this rotation and therefore, there should be compelling reasons to undertake that type of management.' I still really like the idea of it but am sticking to my currently successful regime for now.

ViewsAskew
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Re: Neupro or gabapentin encarbil?

Postby ViewsAskew » Sat Nov 26, 2016 12:21 am

From the perspective of ease, I'd agree. But from the perspective of how well this works long term compared to other things? Seems that long-term would win.
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.

Madmom02
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Re: Neupro or gabapentin encarbil?

Postby Madmom02 » Sat Nov 26, 2016 4:19 am

Beth, I was on sinimet in the mid 1990's.

My current neuro put me on .125mg pramipexole in mid-August of this year. Initially it stopped the RLS completely.

At about 22 days the RLS started waking me rlat 4-5am and then the pramipexole stopped working at all. He increased the dose to .375mg on 9/14 but the RLS continued to alwake me at 4am-ish and the severity increased during the day.

I quit taking it on 9/21 (according to my log I cut back to .125mg first).

Took nothing 9/21-9/27. I think that's when I experimented with the oxycodone but I can't find my log pages for those days.

Retried gabapentin 9/27-10/1 with ensuing depression and no effect on the RLS.

Started .25 ropinirole 10/6 - no effect. Dose increased to .5 11/3 - inconsistent effectiveness.

Dose increased to .75 on 11/8. RLS was a a little more tolerable at night.

On 11/10 the RLS started waking me in the early am. Originally it was 12:30 or 1:30, then it shifted and since 11/21 it's been waking me up at 3-3:30am (There's a lack of clarity in my first posting about this. I meant after midnight, not early am).

I've been taking .25-1.0 clonazepam all along because occasionally it will, with the trazadone, give me 4-5 hours of sleep. I also continue to take 2.5-5mg oxycondone 3x day (total 15mg in 25 hours) for my back pain - I suspect (& Dr. B and my neuro agree) that it may be masking the severity of the RLS.

Maybe its not augmentation. But, the ropinirole isn't working.


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