Neupro Cost

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.
Stainless
Posts: 127
Joined: Tue Dec 01, 2015 9:30 pm

Neupro Cost

Postby Stainless » Tue Feb 12, 2019 9:13 pm

I saw a neurologist this morning (new to me) and at the end of our meeting he prescribed Neupro. I told him I had heard it was very expensive and he was understanding, but said he had no samples so see if pharmacy would sell me 10 to see how it worked. I stopped by pharmacy and asked them to price it before filling it and was told it would have to be ordered anyways. $800 plus for 30 days. Insurance calls it Rejected - Drug not on Formulary. I'm on an Obama Care Gold Plan. I would have to be dying. I guess the suffering will continue.

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

Re: Neupro Cost

Postby stjohnh » Tue Feb 12, 2019 10:07 pm

Yup, VERY expensive. I was on it a while and it worked ok, but I had skin rashes and had to stop. The FDA labelling says 42% of people have skin rashes. Call your doc and say "I can't afford Neupro."
Blessings,
Holland

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

Re: Neupro Cost

Postby Rustsmith » Tue Feb 12, 2019 11:59 pm

It maxed out my insurance monthly co-pay for the 15 months that I used it, before I augmented on it as well. The only benefit that I feel that I got out of it was that during the days that I had them on my shoulders, the patches were visible when I ran . The patch would invariably prompt a question from one of my friends about whether I was trying to quit smoking, which was sort of weird since my running friends knew that I don't smoke. But it did allow me the opportunity start a discussion about RLS and raise awareness in that group of my friends.
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
Posts: 127
Joined: Tue Dec 01, 2015 9:30 pm

Re: Neupro Cost

Postby Stainless » Wed Feb 13, 2019 2:39 pm

Thanks for replies. I knew going in it was expensive but wow! I could finance a Tesla for that much. I called the neurologist first thing this morning. I'm on meds now and my primary referred me to neurologist to try to improve situation. I take gabapentin now at bedtime with clonazepam and would be OK with taking several doses of gabapentin a day if doctors thought that was solution.

The neurologist thinks the pain in my thighs is from 50 years of PLMS damaging the nerves. I don't really buy it but don't have a better answer. The pain can come and go in an hour, last all night or a hour. I think he will come back with Lyrica which I understand is also crazy expensive and dangerous.

stjohnh
Posts: 793
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Neupro Cost

Postby stjohnh » Wed Feb 13, 2019 2:57 pm

Stainless wrote:...

The neurologist thinks the pain in my thighs is from 50 years of PLMS damaging the nerves. I don't really buy it but don't have a better answer. The pain can come and go in an hour, last all night or a hour. I think he will come back with Lyrica which I understand is also crazy expensive and dangerous.


I have been surprised at the variety of odd aches and pains that have improved markedly since receiving my IV Iron infusions. Many doctors think iron is only needed for making red blood cells. Iron is actually needed for ALL cells in your body to function.

Did your new neurologist discuss IV Iron Infusions with you? Recent recommendations have changed the landscape of RLS treatment, though the information has not percolated to many neurologists and almost no internists/GPs know about it. IV Iron corrects the basic cause of RLS, Brain Iron Deficiency. You might take a copy of this article to your neurologist.

https://www.ncbi.nlm.nih.gov/pubmed/29425576
Blessings,
Holland

ViewsAskew
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Location: Los Angeles

Re: Neupro Cost

Postby ViewsAskew » Thu Feb 14, 2019 10:57 am

Stainless, do you know if they have a program - the company, that is - that provides it at a lower cost? I cannot think of what that is called, but some companies provide lower cost meds to people who need them and cannot afford them.

Here - https://www.neupro.com/parkinsons-disea ... vings-card

Even though your insurance is through the ACA, select no regarding if the state or federal govt pays for your prescriptions on the two questions they ask you.

Here is another option: https://prescriptionhope.com/neupro-patch-rotigotine/

I think there may be more ways than this, too. Someone posted about this about a year or so ago, I think. Not sure where it is and I am too tired to find it right now.
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.

Stainless
Posts: 127
Joined: Tue Dec 01, 2015 9:30 pm

Re: Neupro Cost

Postby Stainless » Fri Feb 15, 2019 12:50 pm

stjohn, we did discuss iron. I was tested a few years ago and level was 265 which I understand is way high. That was before I took any supplement like I take now (Iron Bisglycinate). I doubt either my doctor or this new neurologist know much about infusions. Next meeting I'm going to bring up Cannabis. A shop just opened locally. Neurologist would might not write a script but might refer me to someone who will. It is finally legal here.

I did just read some interesting news, Neupro loses it's first patent in March 2019. It may come out generic soon or could drag out forever but I hope with all the attention to prescription costs and alternative pain meds may force their hand.

Isn't Neupro just timed release Gabapentin. That is what I understood but I can't find that in my research this morning.

Rustsmith
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Re: Neupro Cost

Postby Rustsmith » Fri Feb 15, 2019 3:06 pm

Stainless, Horizant is the drug that is a modification of gabapentin. Neupro is sort of a time release dopamine agonist, so in that regard it is similar to Mirapex ER and Requip ER. Unfortunately, all four of the brand name drugs (Neupro, Horizant, Mirapex ER and Requip ER) are super expensive. In fact, if you think Neupro is expensive, you should see the price of Mirapex ER.
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.

QyX
Posts: 436
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Neupro Cost

Postby QyX » Fri Feb 15, 2019 7:37 pm

Cost for prescription only medicine in the U.S. is insanely high compared to western EU countries. However I find it strange that the first dopamine agonist to be used in RLS should be the most expensive of all DAs ... here in Germany, doctors either use Pramipexole or Ropinirole in a generic version and only switch to Neurpo if DAs have to be proven effective long term or the other two alternatives are not working anymore.

To me it would feel like a rip off when I would have to pay crazy money for a drug where it is not even clear if the drug ultimately will work.

While Neupro is a nice drug as long as it works .... at least from what I've read here, it almost never does work long term.

Stainless
Posts: 127
Joined: Tue Dec 01, 2015 9:30 pm

Re: Neupro Cost

Postby Stainless » Fri Feb 15, 2019 8:30 pm

Rustsmith, I was on Requip ER for about a year and was paying about $100 a month and thought that was outrageous. Now I am extremely cheap and I have never been on a drug that was not either generic or fully covered by insurance. I think the only way I'll try Neupro is if it goes generic. I'll be on Medicare in a few years and may have more or less options. Thx for responses.

I thought the neurologist was dealing with my pain, not the rls. I'm now thinking he thinks if he fixes the rls it will help the pain. I had the worst year of my life on Requip ER but stuck with it so as not to go back on Clonazepam. Now that I'm back I don't want to go through that again. Requip worked great for me the first night but quickly failed and I was on 4 mg of ER. Does anyone take generic Requip on a periodic basis, like once a week, just when things get bad?

QyX
Posts: 436
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Neupro Cost

Postby QyX » Fri Feb 15, 2019 8:50 pm

Stainless: in my personal experience dopamine agonists like Requip ER don't help much with the pain. In my case, they only made things worse.

The best drugs for RLS related pain is opioids, then drugs like Lyrica, Horizon, Gabapentin, Kratom and Cannabis.

Sometimes Clonazepam can help a bit but as you already experienced Benzodiazepines are not really a long-term options because of the side effects and tolerance after long term exposure to these drugs.

It seems that many doctors don't take RLS related pain serious or believe that those symptoms can simply be treated with dopamine agonists.

Can you specify what you mean by "had the worst year of my life on Requip ER"? What were the symptoms you were dealing with?

Did you augment on dopamine agonists?

In my case, the longer I took dopamine agonists, the worse my pain got and the only way to improve the situation was to stop dopamine agonists completely.

When you already had a bad response on Requip ER, it is unlikely that Neupro would work out for you long term.

Stainless
Posts: 127
Joined: Tue Dec 01, 2015 9:30 pm

Re: Neupro Cost

Postby Stainless » Sun Feb 17, 2019 1:58 pm

Thx for the reply QyX. My year of DAs started with withdrawals from clonazepam which I was on for 20 years. The freezing feet and knee caps I believe were from withdrawal and I still wrestle with that even after a year back on clonazepam. The pain in my thighs started when I was trying all the DAs. Requip worked for a few days but failed after a week so my doctor put me on 4 mg of Requip ER. My sleep was very bad with bad plms, I had rls 24-7 and had little energy. It seemed better than nothing, which I did for a month. After a year my doctor and a neurologist suggested I go back on clonazepam, which I eventually did but never got back to simple rls and plms. I don't know if I augmented. If I did it happened very quickly.

I just had my first night on Lyrica with no change except I am groggy this morning. I have not brought up opiates and really don't want to go there for all obvious reasons. Recreational pot never did anything so I have not pursued cannabis.

My new neurologist believes the pain is from 50 years of plms. I had never thought of that but I woke up two nights ago in the middle of plms with deep pain in my thighs. I'm thinking he may be on to something. I just do not understand why I never had this pain before quitting clonazepam and starting the DAs. And why I can not get back to that state with just clonazepam, which I tried. Big mistake quitting and it was all my idea.

My life is not as bad as you would think with all my complaining. I'm very active and am used to dealing with rls. My wife is very supportive and we are trying all the supplements. But I'm in my 60s and right now the future does not look good.

QyX
Posts: 436
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Neupro Cost

Postby QyX » Mon Feb 18, 2019 1:23 am

Freezing cold foot, so much that it even hurts is one of my most common symptoms together with pain in my calves and sometimes thighs. So far I get the best relief with opioids and especially Cannabis boosts the power of the opioids. The same with Oxcarbazepine. I had times were antiepileptics were more helpful with the pain however without them, it still would be much worse.

I am 33, no PLMS and there is zero nerve damage in my CNS or PNS. I am sceptical that your PLMS has anything to do with your pain. It is just simply the case that RLS often gets worse the older you get. So it is not surprising that you now have more symptoms than before. It is also my experience that you can augment on DAs really fast.

On Pramipexole, I initially augmented after about two weeks ... and when I got it to work with a few clever tricks, it was a few months. But after that, I did not tolerate DAs for even one more day and my RLS started to get even more complex and severe.

Lyrica never did much for me and it actually made everything worse after only one day. From what I can say about Lyrica, there are lots of people who tolerate Lyrica well with a good cost-benefit ratio while there are also lots of others who simply do not tolerate Lyrica.

With Cannabis, I noticed that it took about two weeks for the analgesic effects to kick in. While Cannabis is not for everyone I seriously would consider opioids when your symptoms do not improve. The physical dependence doesn't really matter when you have symptoms 24/7 because then you would need drugs 24 / 7 anyway ... and I see no difference in being dependent on DAs, Lyrica or Benzodiazepines.

When you just look at the facts, there is no reason to be afraid of opioids, especially when you already have long-term experience with Clonazepam. However I do understand how difficult it can be to decide to take opioids and then find a prescriber in this current climate in the U.S. ... still I think it is worth it.

Let us know if Lyrica helps you. It has a lot of potential in RLS but it seems that it has the most effective in secondary RLS, for example caused by nerve damage caused by Diabetes.

Stainless
Posts: 127
Joined: Tue Dec 01, 2015 9:30 pm

Re: Neupro Cost

Postby Stainless » Thu Feb 21, 2019 7:08 pm

Thx for response Oyx. 5 days in and Lyrica is working so well it is scaring the hell out of me. Ropinirole worked great for a few days and then everything went to hell. My legs have been so calm I forgot what it felt like. Virtually no pain, day and night, even after long hard elliptical sessions.

Under Clonazepam I have restless legs from about 4 or 5 till dawn and get a half day of relief usually. On the DAs it was 24/7. I'm on quite a cocktail now but maybe can drop Gabapentin. I'm pretty high at midnight. I agree and am very suspect about PLMS, nerve damage and pain in thighs but have yet to come up with a better idea. And he repeatedly reminded me "He is a neurologist". I thought it was all a hallucination.

I thought the freezing feet is a hallucination too. (that did kick in just before bed last night). I have found wool boots (UGG) work wonders. I live in Florida and wear them around the house half the year. My general med doctor thinks my feet feel the boot and are stimulated to forget the feeling, not the warmth of the boot. Seems strange but socks and heating pads do not have same affect. Who knows. BTW I am afraid of Opioids and the hassle. I'm saving that for when I'm in my 90s. Maybe by then Medicare will cover a new expensive replacement drug.

QyX
Posts: 436
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Neupro Cost

Postby QyX » Tue Feb 26, 2019 8:13 pm

Oh wow, you are taking Lyrica and Gabapentin both at the same time?

Here is some general advice: if things are great with Lyrica, I would continue taking it for as long as it works, get the best out of it. But overall, if opioids have the potential to massively improve your quality of life, then it is absolutely worth the hassle. We all only have one short life and I think we should do everything we can to have the best possible quality of life. If this means we have to take opioids, we should do it. That's what I believe.

Even in the U.S. it is possible to find reasonable doctors and in your case, I think you would only need a small dose at the evening. For me opioids are the best option when I have this crazy cold feet. Without opioids, my feet can get so cold that it can really hurt, like really really hurt.

What's also interesting: I can also have crazy hot burning feet ... and I kinda never know how it will be. But since Cannabis got added to my cocktail, my symptoms have smoothed out and I was able to cut my opioids by 1/4.

Oh about opioids: you probably won't even need a high potent Schedule II opioid. Something like Codeine or Dihydrocodeine might be enough. This could make things easier for you in case you should decide to go for it at some point.

And about Lyrica: what you describe is really nice. I had similar effects when I started Carbamazepine. It even allowed me to stop opioids for almost 2 months. But over the months and years Carbamazepine lost its effect, up to the point where it was everything worse instead of making things better.

This teached me that even when a drug works great for a few years it is not guaranteed it will do so forever.

And ya, taking Lyrica and Gabapentin together is really weird. It is kinda unnecessary. The normal approach would be that you take one of them and should the Lyrica not work well enough after you stopped Gabapentin, then increasing the Lyrica until things are okay again would be the way to go.

Have your doctors given any reason why they use Gabapentin and Lyrica together?

Technically, Lyrica is nothing else then a newer version of Gabapentin.


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