Experience with Neupro?: I first... - Restless Legs Syn...

Restless Legs Syndrome

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Experience with Neupro?

hm523 profile image
19 Replies

I first visited a neurologist last week (Thursday) who prescribed me Gabapentin. I had awful side effects the first night, but continued on with the medication through the weekend hoping it would just get better. Well, after several nights of insomnia causing me to oversleep and miss classes, I decided it best to call the neuro about my side effects.

Thankfully I was not ordered to come in for another $200 office visit, but was offered a free 1-month supply of the Neupro Patch. I was just wondering if anyone has experience with Neupro? I can't pick it up from them until I have time to stop by their office on Thursday, so I just wanted to get some input before starting the medication. I am so sick of all of these RLS meds giving me such bad side effects!! So frustrating :/

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hm523
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19 Replies
martino profile image
martino

Hi-I have benn on I mg of Neupro since early January. I like it because it is 24 hour release. It did not work on its own and initially I was using Tramadol but now am taking 900mg of Gabapentin. The insomnia was hard but I am also taking 1.5 mg of clonazepam. Last night it was my best sleep for ages. As an aside I tried a tens machine last night for the first time and it was very helpful. I don't think the Neupro would work on its own and I find he cocktail approach best. Hope this rambling helps!

Gonzo123 profile image
Gonzo123

I have been on Neupro Patches for quite some time now and find them the best of all the RLS drugs I have taken. I am on 4mg Rotigitine.

Pippins2 profile image
Pippins2

I have put about my experience with the Neupro patch in a post 2 below this one.The post is called Neupro patch! X

Legsandmore profile image
Legsandmore

Hi, as suggested see thread posts under the Neupro Patch. I too have recently been prescribed the patch and have lots of questions about it. Other posters have responded and l have found their advice and experiences very helpful. On reading your posts you seem to react quite badly to the other regularly used Meds. I have been the same even at low doses.

Good luck with your search for a medication that will work for you. It's very frustrating at times, but it's reassuring to know you are not alone in this.

I'm taking the 2mg one but I also have to take Targinact. Even with that concoction I still have bad nights! IN saying that as a dopamine agonist it appears to have much less side-effects than the others.

John_naylor profile image
John_naylor

Did you build up your Gabapentin dose slowly ( 1 for 5 days, 2 for 5 days, 3 etc? ) I found it necessary. Still got some side effects, feeling sick, sense of smell enhanced etc. but I coped and it worked for 9 months. Doc told me to change directly to Pramipexole and I had 2 crazy weeks. Essential to come off slowly then build up slowly.

Neupro patches were excellent, least side effect but I have low blood pressure and passed out a couple of times when I increased dose. Lasted a few months before augmentation. Tramadol saved me.

Redhots7 profile image
Redhots7

Hm523, don't know where you live but I am in USA.  At our local Health Food Store, I buy a liquid product (all natural ingredients , Amish Formula, made from certified organic apple cider vinegar, all natural ginger and garlic juice).  You mix 1 capful in 2 ounces of water or fruit juice.  I mix with water and it taste and smells awful BUT IT WORKS !  The name is:  STOPS LEG & FOOT CRAMPS IN ABOUT ONE MINUTE.  I have RLS  and mix it in my kitchen, drink it and by time I walk back to bedroom, already getting relief.  You can google it and buy online and shipped to you .  I buy it in 8 oz bottle .  NO SIDE EFFECTS !  Hope this is the relief you have been looking for !!!!  Diana. Good Luck !

hm523 profile image
hm523 in reply to Redhots7

Thanks for the suggestion! I am in the USA, so please let me know what kind of health food store. I'm sure we have it here in Texas too. Thank you!

Redhots7 profile image
Redhots7 in reply to hm523

The one I go to is Dobsons Health Food Store.  GNC is a big chain health store. You want one that sells all kinds of vitamins, minerals, etc. 

Usually GNC is in shopping malls. 

Check your yellow pages , look up Health Food Stores.

Also could google for one in your area.  At my store, they have them sitting on the counter next to check out. 

Keep me posted, really excited to see if it helps you as much as it helped me. 😘

in reply to Redhots7

Hi Redhots. I Think everyone with RLS, especially mild to moderate, should try it. Even as an add on for when their RLS breaks through despite the DA or opiate they took.  I'm going to guess that it works because it causes a quick substantial release of dopamine the way hot peppers do. I think people should have a cupboard full of ACV, turmeric, ginger, allicin ( the active ingredient in garlic) potassium, hot peppers and then experiment during an attack. This type of experimentation turns RLS into an intellectual endeavor.   Something we should all be doing except for those who are way too sick and far gone to do so.   Orgasm is the only thing I found to work within seconds. You would think that given how important reproduction is that the dopamine rush would linger for awhile. Yet I'm lucky if I get 20 minutes. It's ok the list of dopamine provoking substances is as endless as the RLS provoking substances. 

Redhots7 profile image
Redhots7 in reply to

Works for me, miserable many nights.  I have also used a lotion called TWO OLD GOATS, also works well but takes longer . 

in reply to Redhots7

Well Redhots I see that you have fibromyalgia.  Have you ever been tested for SIBO - small intestine bacterial overgrowth?  I read an article where they tested people with IBS and found that about 50% had SIBO.  Same for RLS.  But the fibromyalgia patients ALL tested positive for SIBO.

 I had the test done...twice.  I don't have it.  The test is so fascinating and completely non-invasive...you breathe into about a dozen baggies after drinking lactulose.  They then test the gas in the baggies for levels of hydrogen and methane.  High levels indicate SIBO.  I'm more of a candida overgrowth gal.

Redhots7 profile image
Redhots7 in reply to

Bisglyc, SIBO?? Never heard of it ?  Something I need to be tested for ??  Would it make a difference if I did have it ???

in reply to Redhots7

To me it's almost a must.  I didn't have SIBO, but like I told you I did have an overgrowth of candida.  We need candida, it's a wonderful micro-organism, but give it an inch and it will take over your whole GI tract.  It is a life long battle keeping it at bay.  I just shake my head as I look back at how sick I was before treatment.  The fatigue, weight loss, dizziness, were astounding.  My GI doctor, who is actually a brilliant researcher, recommended Metamucil. 

Anyways, people seem to get COMPLETE relief from RLS, IBS and FIBRO while they are taking the antibiotic for SIBO.  Then within weeks or months it rears it's ugly head it seems in most cases.  So the protocol is changing.  Once people stop the antibiotic they want people to take zinc (which is very antibacterial) and sometimes a pro-motility drug. 

I say go for it!!!

in reply to Redhots7

I like DMSO for aches and pains.  A totally dangerous and irresponsible topical substance to use.  It's a carrier substance.  Anything on your hands will be carried into your bloodstream along with the DMSO.  I take calculated risks.  The Chicago Bears used to use it and like everything else eventually they went on to other things.  Anyways, a man I work with believes that Walter Peyton (famous Bears player) developed liver disease and died (decades ago now) because he would slather the DMSO on then go out onto the football field which has all kinds of chemicals on it and then the chemicals entered his bloodstream and liver.  So I never recommend the use of it but like Two Old Goats, it's the only topical that works for my lower back pain.

Lor7 profile image
Lor7

I tried 'STOPS LEG & FOOT CRAMPS IN ABOUT ONE MINUTE'!  Did absolutely nothing for my RLS but did give me heartburn!  :)  So another wast of money but will try anything.

DisneS profile image
DisneS

Hi  I have been on neupro for at least 3 years. I started with 1mg but after some time I started to experience augmentation (when the drug is no longer adequate) and had to increase the dose to 2mg but have managed since then (probably about 2 years) without increases. I also use spray on magnesium) which also seems to calm my legs.

martino profile image
martino

Further to my post above I have had to come off the neupro because of side effects including rebound. I am now on an extended relief tramadol called tramulief plus 1800mg gabapentin. Let's see if this does any good. I have now tried all the dopamine agonists!

Chester09 profile image
Chester09

I can only tell you what i have experienced ive been on the patches for about 4yrs 1st on 1mg then 2mg now on 3mg it was a life saver for me you have to be strict with the time you put them on and really stick to that time hopefully they will keep on working for me cus i dread the time they stop!!!!

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