Horizant and Neupro - has anyone used these Rxs?

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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SuzeLeslie
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Joined: Wed Aug 23, 2017 6:59 am

Horizant and Neupro - has anyone used these Rxs?

Postby SuzeLeslie » Thu Mar 28, 2019 12:53 am

I have been on Mirapex and Requip to no effect, so I'm wondering if anyone out there as used Horizant and/or Neupro. Did they work or not work? Thanks!!!

stjohnh
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Re: Horizant and Neupro - has anyone used these Rxs?

Postby stjohnh » Thu Mar 28, 2019 1:11 am

SuzeLeslie,
Perhaps you could tell us a bit about your doses and what kind of problems you are having. When you posted in 2017 you were on high doses of medicine. If what you mean is that the Mirapex and Requip used to work, but you are now on higher doses and they don't seem to work any more, then likely you are augmenting.
Blessings,
Holland

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

Re: Horizant and Neupro - has anyone used these Rxs?

Postby stjohnh » Thu Mar 28, 2019 1:16 am

stjohnh wrote:SuzeLeslie,
Perhaps you could tell us a bit about your doses and what kind of problems you are having. When you posted in 2017 you were on high doses of medicine. If what you mean is that the Mirapex and Requip used to work, but you are now on higher doses and they don't seem to work any more, then likely you are augmenting.


A fair number of people have used Horizant, it works like an improved (but VERY expensive) version of gabapentin. It us usually only effective alone for people with mild RLS.

Neupro (also very expensive) is a patch version of a dopamine agonist, closely related to Requip and Mirapex. If you are augmenting it probably will not be any better than the Requip or Mirapex.
Blessings,
Holland

SuzeLeslie
Posts: 7
Joined: Wed Aug 23, 2017 6:59 am

Re: Horizant and Neupro - has anyone used these Rxs?

Postby SuzeLeslie » Thu Mar 28, 2019 12:46 pm

Ok, thanks Holland! I just bought some Red Borneo Herbal Tea (Kratom) and I look forward to its working on me. Could you tell me how it works exactly? Thanks!

SuzeLeslie
Posts: 7
Joined: Wed Aug 23, 2017 6:59 am

Re: Horizant and Neupro - has anyone used these Rxs?

Postby SuzeLeslie » Thu Mar 28, 2019 12:49 pm

About that 2017 post, I tried Reuip and Mirapex with no help whatsoever, so I just stopped using them. I started using Magnesium and B Complex and it worked but now it's back again.

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

Re: Horizant and Neupro - has anyone used these Rxs?

Postby stjohnh » Thu Mar 28, 2019 1:33 pm

SuzeLeslie wrote:Ok, thanks Holland! I just bought some Red Borneo Herbal Tea (Kratom) and I look forward to its working on me. Could you tell me how it works exactly? Thanks!


Kratom is a natural ground up leaf that has many naturally occurring substances in it. Some have been studied, many have not. It is known that one of the compounds stimulates the mu-opioid receptor, similar to the way opioids do this. However, exactly how kratom relieves RLS symptoms I don't believe is known. I also don't believe it is known how opioids relieve RLS symptoms.

You probably should look into IV Iron infusions. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub
Blessings,
Holland

SuzeLeslie
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Joined: Wed Aug 23, 2017 6:59 am

Re: Horizant and Neupro - has anyone used these Rxs?

Postby SuzeLeslie » Thu Mar 28, 2019 1:37 pm

How many infusions would one need?

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

Re: Horizant and Neupro - has anyone used these Rxs?

Postby stjohnh » Thu Mar 28, 2019 1:41 pm

SuzeLeslie wrote:How many infusions would one need?

Between 1 and 3 sets the first year (each set is 2 infusions, one week apart). After that about one set a year, though there is much variation, and some people don't get any benefit at all, for reasons that are not currently known.
Blessings,
Holland

SuzeLeslie
Posts: 7
Joined: Wed Aug 23, 2017 6:59 am

Re: Horizant and Neupro - has anyone used these Rxs?

Postby SuzeLeslie » Fri Mar 29, 2019 2:06 am

Do I have any hope? Currently I have to get my sleep during the day and I don't like that. I have a trip coming in April where I may have to share a bed with my mother who does not have RLS.

ViewsAskew
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Re: Horizant and Neupro - has anyone used these Rxs?

Postby ViewsAskew » Fri Mar 29, 2019 6:49 am

SuzeLeslie - it is very uncommon that the dopamine agonists do not work. At least one specialist has proposed using them to ensure people have RLS instead of something else, as they seem to always work. They may have side effects or other reasons people cannot take them, but they work.

That they do not work for you brings up a question of whether this might not be something else.

How would you describe your symptoms?
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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