Odd reaction to 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.
knoxtnhorn
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Re: Odd reaction to Neupro

Postby knoxtnhorn » Thu Jul 21, 2016 5:12 pm

Got it and thanks. I was wondering about the amount of misery I might be bringing on by cutting out all meds.

Last night, I put on my regular 2mg Neupro patch but also took a .5 of Ropinerole. I was extremely comfortable; however, I'm assuming mixing the two is probably not a good idea, yes?

ViewsAskew
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Re: Odd reaction to Neupro

Postby ViewsAskew » Thu Jul 21, 2016 8:29 pm

I have no idea if mixing is a problem. I wouldn't think so...but am not a pharmacist or doctor!
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.

stjohnh
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Re: Odd reaction to Neupro

Postby stjohnh » Thu Jul 21, 2016 8:34 pm

ViewsAskew wrote: ...cutting back really isn't better than cold turkey - it takes longer but is just about as miserable. ...


My experience is as Ann states, though "miserable" would be a gross understatement in my case. Several days and nights of pure torture plus a couple of weeks of misery is how I'd describe my experience.

Kratom might help some, or maybe ask a friend if they have any left over Vicodin, hydrocodone, Prcocet, oxycodone, they would give you while you get off the Neupro.
Blessings,
Holland

Sojourner
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Re: Odd reaction to Neupro

Postby Sojourner » Fri Jul 22, 2016 8:18 am

knoxtnhorn wrote: I'm relatively young and I just can't imagine spending the next 50+ (or whatever) years upping meds or turning to narcotics. The thought terrifies me.



Looking at a glass that is at least half-full here....Looking back at having had this ^%&*%^* disease for 50+ years I think I'd rather be in your position looking forward to 50+ years. Why? I'm pretty confident that with all the breakthroughs occurring in medicine via new research that virtually all of our "young folk" who visit here will, yes will, be the recipients of new, effective, and long term treatment and relief from rls. That is my wish, hope, and belief.

Wishing all who visit here some piece this night
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

knoxtnhorn
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Re: Odd reaction to Neupro

Postby knoxtnhorn » Sat Jul 23, 2016 4:02 am

Good view to have. To be honest, I don't even like taking Aspirin or Aleve when I get a headache. I've had bad reactions to allergy meds, muscle relaxers, am highly allergic to Aspartame and Morphine, and somewhat immune to anxiety drugs like Xanax. I'm just not that big a fan of meds in general - especially with the idea that I'd be taking them, daily, for the rest of my life.

So I guess the question on my mind (and most everyone else on here) is, am I augmenting or something else. I really do wish I had the ability to just go cold turkey (w/ help) for a week and see what happens.

ViewsAskew
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Re: Odd reaction to Neupro

Postby ViewsAskew » Sat Jul 23, 2016 4:09 am

If you try not to take the meds for a day or two, you'll know if you are augmenting. If you are not, you'll have the same level of symptoms you had before you started using dopaminergics. If you have augmented, your symptoms will have increased and be worse, usually much worse.
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.

knoxtnhorn
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Joined: Wed Feb 12, 2014 12:05 am

Re: Odd reaction to Neupro

Postby knoxtnhorn » Sun Jul 24, 2016 7:25 pm

Wow. I think you answered my question before I asked it.
So, I had a few .5 milligram Ropinerole's in my cabinet. Since I was having no relief AND nausea, insomnia, and weak legs with the Neupro, I tried to switch last night. I didn't put on the Neupro patch and just took 1.5 milligrams of Ropinerole thinking, at least I won't have the weak legs (soccer game) today. And, as expected, not an ounce of sleep. I've been zombified all day but unable to relax as my legs go nuts the second I hit the bed/chair.

So, just to be sure, this appears to be augmentation, yes?

As always, I appreciate the help. I'm pretty worried as I think my doc is just going to refer me to a nerve specialist. Last time this happened (for something else) it took almost 3 months to get an appt. I don't think my doc understands how severe this issue is. Over the past 3 weeks, I've had, maybe, 3 nights of 6+ hours of sleep, ~ 11 nights of 1-4 hours, and 7 nights where I've, literally, not slept the entire night.

Rustsmith
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Re: Odd reaction to Neupro

Postby Rustsmith » Sun Jul 24, 2016 9:14 pm

The second discussion thread in our Augmentation forum is titled Augmentation Evaluation. It has several links that you may find helpful in evaluating whether you think that you are augmenting.

The fourth discussion thread in that forum has a link to a white paper on Augmentation by the International RLS Study Group that was released last August . It is something that you could take to your doctor and ask him/her if he/she has seen it (that often works better than saying "I found this on the Internet"). BTW, there is a good chance that your doctor has seen it because the RLS Foundation sent 50,000 copies out to doctors last year. How many of them took the time to read it is a different question.
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.

ViewsAskew
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Re: Odd reaction to Neupro

Postby ViewsAskew » Mon Jul 25, 2016 4:40 pm

Definitely look at the info we have on augmentation. It will help you assess and decide if this is the right idea. Generally speaking, augmentation is 1) symptoms are stronger, and/or 2) symptoms start earlier, and/or 3) symptoms last longer. It usually sneaks up on you - it's a progression over time. It's not until it's been going on for awhile that it gets really crazy. One question you can ask is, "Are my symptoms worse than when I first started taking the drug?" If it's been less than 2 years, it's likely augmentation. Even if it's more than two years, how much worse is it?

Can you take any opoids? If you can and you have any, that might help you figure it out. Opioids almost always work when augmented. I only had a very mild opioid but still was able to use it when augmented. I took the max dose and I was all the sudden symptom free! The symptoms came back with a vengeance shortly there after.
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.

knoxtnhorn
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Joined: Wed Feb 12, 2014 12:05 am

Re: Odd reaction to Neupro

Postby knoxtnhorn » Mon Aug 01, 2016 1:46 pm

Thanks. I'm all over the place right now. At this point, my sleep breakdown is about:

30% - average night. 6 hours of sleep.
40% - bad night. 2-3 hours of sleep.
30% - hell on earth. Literally wide awake all night.

What I'm trying to figure out is why I'll have absolutely terrible symptoms one night, average symptoms another night, and, at times, almost no symptoms. I'm curious as to why there is such a variable in results.

Saw my doc last week. He gave me Traz-something or other. (Sleeping pill) But it hasn't really helped other than that, by 6AM, I feel as if I could sleep all day.
He referred me to a neurologist who can't see me until March. WTF is that?

Anyway, I'm just going to see what happens. Not to jinx myself but, perhaps, I'll get an injury sooner rather than later and I can just try to go cold turkey using the prescribed narcotic. I feel as if I could go a week w/o meds IF I had the requisite narcotic meds but I'm not comfortable asking my doctor for them specifically for RLS because I live in TN and there's a huge crackdown on prescribed narcotics. I don't think he'd be receptive and I feel as if I might end up on some sort of black list if I do.

Rustsmith
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Re: Odd reaction to Neupro

Postby Rustsmith » Mon Aug 01, 2016 2:09 pm

The medication your doctor gave you is Trazadone, which is an old technology anti-depressant that also works as a sleeping pill. It does not have any effect on RLS other than sometimes helping with sleep. It did not do anything for me other than make me walk around the house all night bumping into everything like I was drunk.

As for the time to get into the neurologist, the five month delay might actually turn out to be a good omen. It is often fairly easy to get new patient appointments with garden variety neurologists, but these doctors often have little experience with treating RLS. Neurologists that are knowledgeable in handling RLS patients are few and far between and thus in high demand. I had to wait four months to start with my current doctor. It was a very difficult four months, but I now feel that it was well worth the wait. So, do a bit of research on the doctor to get an idea of the doctor's background, experience, etc. Check to see if the doctor is part of the RLS Foundation's Quality Care system or simply ask if anyone here knows anything about that doctor. If you come up blank, then you might consider going back to your primary care doc, who may not be aware of the problem and would refer you to someone else.
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.

ViewsAskew
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Re: Odd reaction to Neupro

Postby ViewsAskew » Mon Aug 01, 2016 9:11 pm

Same results as Steve with trazedone if trying to help with RLS - no go and be loopy/drugged yet still need to move. When I take it and the RLS is under control, then I'm out like a light and a zombie on day 1. By Day 3, it's good. But, I acclimate completely by Day 4-5 and then it isn't helpful - so increase the dose and be a zombie for a few days, then acclimate and nothing. After three increases, I never took it again to help with sleep.

Do you know if the neuro is supposed to be a specialist in RLS? Sorry if I missed that....
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.

knoxtnhorn
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Re: Odd reaction to Neupro

Postby knoxtnhorn » Wed Aug 03, 2016 5:54 pm

I'm not sure how much of a specialty the neuro has specifically to RLS. I will say that I saw him a year ago for something else and I wasn't impressed. For taking 3 months to get in, I kind felt like I got the brushoff. Hopefully, by then, I'll have a better idea of exactly what's going on. At this point, I'd kind of like to either start a proper regimen of x, y, z than bounce all over the place like I've done the past 6 months - even if my symptoms aren't entirely cured, it'd be nice to know what to expect and how to react.

As to the Trazadone, I know it's for sleep and I had similar symptoms to y'all. If my legs are ok, I'm out cold. However, I've had a couple of nights where my legs were on fire and the Trazadone just made me more miserable because it made me so tired. As I stated earlier, there are nights where I sleep ok, there are nights where my legs are fine but I'm wide awake - this is where the Trazadone helps. The WORST is when my legs are jumpy AND I'm on the Trazadone. Previously, if my legs were asleep and I was wide awake, I could read, watch a movie, crossword puzzle, or listen to music; however, with the Traz, it makes these things unthinkable.

ViewsAskew
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Re: Odd reaction to Neupro

Postby ViewsAskew » Wed Aug 03, 2016 8:09 pm

All of the drugs that knock you out - at least in my opinion - are the same. If your symptoms are quiet, they are great! But if you do, then it's truly horrible.
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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