Neupro

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.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
vkelley
Posts: 3
Joined: Tue Aug 14, 2018 12:51 pm

Neupro

Postby vkelley » Tue Aug 14, 2018 1:39 pm

I am new to this forum and have learned a lot from reading all of your posts. My RLS got significantly worse about 2 years ago where it started affecting all aspects of my life. My PCP officially diagnosed me about 1 1/2 years ago and put me on Roprinole 1 mg. I had to take it every night but after a year I started augmenting. I found an RLS specialist in Houston with the Methodist Movement Disorders Clinic and went to see him last week. He told me that Roprinole was the least effective of the dopamine drugs and put me on Neupro. He also explained the other class of drugs (gabapentin, opiods, etc.). Luckily he had several dosing samples of the Neupro so I haven't had to purchase it. I started with the 1 mg patch and it did nothing at all for me. The next two days I used a 2 mg patch and it alleviated the majority of the symptoms, but I still had difficulty sleeping through the night. The 3rd night (last night) the RLS symptoms were out of control. I added a 1 mg patch to see if it would help, but no luck. I couldn't sleep for more than 2 hours without having to get up ... and my "normal" walking and/or stretching wouldn't help. I was literally on my stationary bicycle at 2 a.m. so I could get relief. I am so frustrated because I thought this was going to be my miracle patch. Now I don't know if I should keep taking the 2 mg patch, try 3 mg, or what. (Just to note, I have emailed my doctor for his response.)

The dr has also given me orders to have iron IV infusion, but I am having some difficulty getting it scheduled. My ferritin level was only 10 when I had labs done last month. I had labs done again last week but haven't received the results yet. I do already take a multivitamin with iron and iron supplements, so I feel confident that my insurance will approve it.

Sorry for the rambling, lack of sleep will do that. :) For all of you who have been through this, I'd love your opinion on if I should keep taking the Neupro and, if so, 2 or 3 mg? I'm hoping that once I do get the iron infusion that it will help the effectiveness of the neupro. I've read a lot of you are on a variety of meds for RLS, but right now this is my option. Just a side note ... I do take Duloxetine (Cymbalta) for depression and fibromyalgia. And, as I am in Texas, medical marijuana is not an option ... although I have a daughter in Washington State so I guess I could make a trip out there. lol

I would love all suggestions anyone would be willing to give! Thank you!!

stjohnh
Posts: 561
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Neupro

Postby stjohnh » Tue Aug 14, 2018 2:43 pm

Vkelly, welcome to the RLS Community. You will find lots of folks here that are helpful and really get how debilitating this disease is.


From your description it sounds as though your RLS specialist is taking a standard acceptable approach to treating your augmentation with ropinirole. Checking ferritin is standard, giving Iron Infusion is a standard form of treatment for those with low ferritin. Switching from ropinirole to a long-acting dopamine agonist like Neupro is also part of the standard algorithm for treating augmentation.

I'm not sure if you're aware but that Neupro patches are extremely expensive. Be sure and get as many samples as possible and if you have to buy some be sure and buy a small number until you are sure you can afford it, it is effective, and not causing rashes. More than 50% of people that use Neupro patches have to stop because of rashes even though the medication may be effective.

Since it appears as though your RLS specialist is using standard acceptable treatment options, I think I would just keep your doctor well-informed, inform him/her of the problems you're having with Neupro, and go with his or her recommendations.

The iron infusion has a pretty good chance of helping, possibly a tremendous help.

The majority of us that have used medical marijuana find that it doesn't help the urge to move symptoms very much, but does help the insomnia that accompanies RLS. There are exceptions however.
Blessings,
Holland

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Neupro

Postby Polar Bear » Tue Aug 14, 2018 6:26 pm

It's past history now but just to ask, did your GP start you straight onto 1mg Ropinerole or were you titrated up?

No worries about rambling...... :D
All of us are very familiar with the lack of sleep, the walking through the night and the frustrations.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 3287
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Neupro

Postby Rustsmith » Tue Aug 14, 2018 8:17 pm

vkelley, welcome to the group. You are in great hands with Dr Ondo. He was the first RLS specialist that I saw after a disastrous series of neurologists. I still have great confidence in his advice and would still be one of his patients if we hadn't moved from The Woodlands to Colorado.

For the size of the Neupro patch, remember that Neupro is just a different dopamine agonist from Requip. So, it isn't like you are starting from zero, your body is already used to the Requip and so you probably need to be on the 2 mg patch rather than the 1 mg ones. Hopefully this will be enough once your body adjusts to a more constant level of medication rather than the jolts each time you take a pill.

As for your ferritin level, there simply isn't enough iron in a daily multi-vitamin to provide what those of us with RLS need. We each probably have a different "problem" with iron, but many of us simply cannot seem to get enough. Trying to increase ferritin levels, even with iron supplements several times a day, can take weeks and many have problems with the side effects of taking iron. So, it is good that you are going to be getting an infusion. It may help with your RLS and it should also help delay repeating the augmentation on Neupro.

Finally, even those of us who have been on a consistent treatment scheme for our RLS will have good and bad days. So, just because the Neupro didn't work last night doesn't mean that it isn't working. That is one of the problems with severe RLS. Even when you think you have things well under control and you have been getting several nights of good sleep, bam, it hits and you are up most of the night. And for some reason it always picks the night before when you have something the next day when you really wanted to be at your peak. :D
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.

vkelley
Posts: 3
Joined: Tue Aug 14, 2018 12:51 pm

Re: Neupro

Postby vkelley » Wed Aug 15, 2018 4:38 pm

Thank you all for the feedback. Someone asked if i has been started on 1 mg Riprinile or titrated up. I was actually started on 1 mg. I was told that was a low dose. As i mentioned, I messaged my neuro after that bad night and he told me to stay on the 3 mg and increase to 4 if needed. Last night was much better. I still think I may have to increase to 4 but am going to give it a couple of days. I’m also still trying to get scheduled for the iron infusion so am keeping my fingers crossed that will help. I am aware is the cost of the Neupro. I have good insurance but even with that my coinsurance will be $100. I have a discount card for Neupro, so hopefully that’ll bring the cost down some.

Thanks all for the encouragement. No one really understands the misery of this condition unless they actually live with it.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Neupro

Postby Polar Bear » Wed Aug 15, 2018 6:37 pm

1mg is now considered to be the maximum daily dose of Ropinerole for treatment of RLS.
It is usually started at a dose of 0.25mg.
1mg is a very high dose to start with.
There was a time when 4mg was considered ok as a Ropinerole max daily dose but it has since been agreed that 4mg is much too high daily and likely to lead to augmentation.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
Posts: 476
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Neupro

Postby legsbestill » Thu Aug 16, 2018 12:18 pm

I was put on neupro by my sleep consultant after withdrawing from pramipexole following augmentation. She left a gap of about three months between stopping pramipexole and starting neupro. I never found neupro to be as effective as pramipexole. I also started to augment on neupro quite quickly.

I have left over neupro in the house and I return to it intermittently (partly to try and use it up in light of how much it cost me) and am always disappointed in it. Pramipexole (even at a very small dose) is far more effective for me. I don’t know if I am an exception (variability of response amongst sufferers being a notable feature of rls) or if neupro is not actually as reliable as it is sometimes billed to be.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Neupro

Postby ViewsAskew » Thu Aug 16, 2018 8:07 pm

legsbestill wrote:I was put on neupro by my sleep consultant after withdrawing from pramipexole following augmentation. She left a gap of about three months between stopping pramipexole and starting neupro. I never found neupro to be as effective as pramipexole. I also started to augment on neupro quite quickly.

I have left over neupro in the house and I return to it intermittently (partly to try and use it up in light of how much it cost me) and am always disappointed in it. Pramipexole (even at a very small dose) is far more effective for me. I don’t know if I am an exception (variability of response amongst sufferers being a notable feature of rls) or if neupro is not actually as reliable as it is sometimes billed to be.


This is almost exactly my experience. I am amazed at how well pramipexole works for me - especially as none of the other DAs does work as well.
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
Posts: 476
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Neupro

Postby legsbestill » Fri Aug 17, 2018 4:44 pm

That's affirming to hear, Ann. Most people seem to get on well with neupro. I kept thinking I must be mistaken when I found it less effective. I am currently taking a break from pramipexole - this is day 8 - and it is misery. Kratom, which used to work reasonably well, is not really dealing with the symptoms. Maybe my supply is a little stale or something. I am looking forward to resuming pramipexole but will try to stay off it for another two weeks.

Wealden1640
Posts: 6
Joined: Thu Aug 02, 2018 3:42 pm

Re: Neupro

Postby Wealden1640 » Sat Aug 18, 2018 11:16 am

I have been taking Pramipexole for years - it seems to be the only med that works for me. I take one at night before I go to bed. It works 99% of the time. Of course, sometimes there's that night when it doesn't work at all and I'm awake all night.

What is "augmentation" that everyone is talking about?

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Neupro

Postby Rustsmith » Sat Aug 18, 2018 5:28 pm

Augmentation is a common complication that occurs when taking a dopamine agonist, like pramipexole, for an extended period of time. The time for it occurs varies between individuals. For some, it can occur in days and for others, it does not happen for years. You sound like you fall into the latter group.

With augmentation, your RLS symptoms start to occur earlier in the day and they can spread from just the legs into the rest of the body. For a while, doctors thought that this was simply a matter of developing a tolerance, so they would prescribe larger and larger doses to try to keep the RLS at bay.

When I went through augmentation, instead of simply taking a 0.25mg pramipexole pill in the evening, I eventually got to the point where I had to take one in the morning, another just after lunch and yet another in the evening. In spite of this, I was averaging only 3 hrs of sleep each night and was at risk of falling asleep while driving if I was behind the wheel for more than about 30 minutes. For drives longer than that, this required me to pull over occasionally and take about a 15 minutes nap.

To read more about augmentation, take a look through our Augmentation forum and read some of the discussions.
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.

Wealden1640
Posts: 6
Joined: Thu Aug 02, 2018 3:42 pm

Re: Neupro

Postby Wealden1640 » Sat Aug 18, 2018 8:28 pm

Wow, thanks, I had never heard of augmentation. I think I must be OK - my pill usually works at night. But I actually could use one at noon because I can't even sit in a chair and read because of the jerking. But if I take a pill, I sleep all afternoon. I'm still just on .125.

I'll read up on it. Again, thanks!

Caitrin
Posts: 33
Joined: Thu Nov 05, 2009 2:49 am
Location: New Jersey

Re: Neupro

Postby Caitrin » Mon Aug 20, 2018 1:39 pm

I began augmenting on Sinemet in January of this year, from one 50/200 mg tablet once daily for 20 years to two 25/100 tabs/day and finally to 3 tablets/day. I decided to try a DA and yesterday tried a Neupro 2 mg patch my new neurologist had given me. I took it at 4 p.m. yesterday and all day/night had no leg movements which I had daily on the Sinemet. Can anyone tell me if they have experienced this initial side effect? I ordered the book "Clinical Management of RLS" suggested by members of the forum and it does mention that could be one side effect among others. I will probably continue the Neupro as I have severe RLS with leg movements throughout the day. Would appreciate input from those who have taken or are currently taking Neupro and the dosages. Also I understand this drug can cause augmentation as with other DA's.


Thank you for your input,

Kathy (Caitrin)

Rustsmith
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Re: Neupro

Postby Rustsmith » Mon Aug 20, 2018 1:47 pm

Kathy, I'm not sure if I understand your question about side effects with Neupro. You say that you did not have any leg movements on Neupro? One of the primary purposes of any RLS treatment is to control the leg movements, so this is reason to use a medication and would not be a side effect.

As for augmentation on Neupro, yes you can augment on it. I augmented on pramipexole after a year and was placed on Neupro. I was up to 4mg/day when I augmented on Neupro and had to ultimately switch to an opioid. When Neupro was first released, the theory was that it would not cause augmentation, but doctors have since some to the realization that can occur but often takes longer due to the extended release characteristics of the patch.
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.

Caitrin
Posts: 33
Joined: Thu Nov 05, 2009 2:49 am
Location: New Jersey

Re: Neupro

Postby Caitrin » Mon Aug 20, 2018 2:55 pm

Steve, Sorry for the confusion. I omitted that I was experiencing some edema as a side effect. I also experienced drowsiness and still am today. I am not alert today and a bit confused. Having taken into consideration the fact that this DA causes these unusual side effects as well as augmentation and the cost of $266/mo., I am reverting to my plan to cut back on the Sinemet gradually. Although I am active and on my feet most of the day and exercise 5-6 days a week on the treadmill, it is my intention to stand while on my computer and during other activities when I am normally sitting. I feel more alert now that it is 11 a.m. but still sleepy. I had received the paperwork to make an appointment with the doctors in Boston/Connecticut and will follow through when my husband has full recuperated.

Kathy


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