Neupro (dopamine patch)

[FidgetBoy]

Hi all- I thought I'd start a thread on this potential new treatment for us. I know it's been mentioned quite a bit and since I didn't know much about it, I spent some time researching it. I found a nice summary at:

http://www.emea.eu.int/humandocs/PDFs/E ... 606en1.pdf

It looks like this patch is only available in Europe right now and is only indicated for parkinsons. You have to switch the patch once a day and rotate the site quite a bit. While it sounds pretty good- a couple of things concerned me. 1) It appears it is not as efficacious as Requip? (But perhaps they didn't use the right dose?) 2) There is a burning pain that can happen at the site where you place the patch. So it looks like you have to rotate the patch site quite a bit. 3) Schwarz-Pharma lists nausea and dizziness/sleep attacks as happening in greater then 10% of patients (which is perhaps no different then other DAs). I was pretty nauseous and fatigued on Mirapex and Requip.... so I'm wondering if those side-effects would be better or worse with the patch? On the one hand, the patch would deliver less drug more frequently- so you would think it would be better tolerated. But-on the other hand, you're getting the drug all day long, so maybe there is a potential for feeling sleepy/crappy 24/7? Also- what about augmentation? Would it be non-existent with this patch or still a possibility? Inquiring minds want to know! Josh

[cornelia]

In another thread I mentioned that I was on Dostinex, a DA for 24/7 RLS, with a half life I think of 60+.
I am not sure if it can be compared with the patch. I had the same crappy, depressive feelings as with Requip (I am still on 1mg) and Mirapex, only worse. I fell asleep in the afternoon, couldn't keep my eyes open. The relief was better, but I couldn't get to a therapeutic dose because of these side-effects (I tried for 5 months).
There was NO augmentation.
However, my friend has been on it as a single therapy for 4+ years and is has saved her life. So again, everybody reacts differently.

Corrie

[ViewsAskew]

One of the neuros I saw mentioned that she thinks it will help augmentation. The belief, according to her, is that it will work more like Dostinex and the constant amount of lowered dopamine will prevent the surges that may contribute to augmentation.

I'd guess, however, that they are guessing! They don't even know what caused augmentation. There haven't been any studies about it to speak of, and most doctors aren't even all that aware of it. From talking to the doctors at the conference, I got the impression that the results that we all cite (30%) are even guesses. No one has followed a significant population for any length of time.

The patch you mentioned is getting closer to approval in the US - it's a little farther along for PD, but it shouldn't be more than a year or so before it's available here. Like you, I'm not sure it's going to benefit those of us who couldn't tolerate DAs to begin with, but maybe it will offer one more alternative so that people who find Requip and Mirapex to be not quite right will have great luck with it. Or maybe it will be the thing that helps people who do augment - they can stay on a DA.

[FidgetBoy]

I want to believe that this patch may be worth trying for my RLS... but it's difficult to get excited when you've been let down so many times before. If the theory is the "on/off" dopamine agonism is contributing to augmentation, then maybe this patch will be a wonder drug. I read yesterday that they will be doing a specific RLS study with this patch early next year. I'd be willing to sign up for that study... I wonder how we go about finding out how to enroll?

[ViewsAskew]

I feel the same about the yearning, but being realistic!

They finished one round of tests last year - some people here posted about it. US studies are always posted on the government site - can't think of the name right now. I'm sure it will be in many different cities - but they may not be close to you. The last time there wasn't any of the patch here in Chicago - odd!

[FidgetBoy]

well, and the other thing I just thought of is that most studies require a wash-out period where you can't be on any meds and they usually don't allow any other meds during the study either!! Talk about a big mistake for people like us, Ann! :::tries to forget a past without narcotics:::

Josh

[ViewsAskew]

I can't imagine stopping the narcotics at this time to try and investigational drug and the possibility that I would get a placebo! Not a chance. The truth is, I suspect, that they don't take people like us anyway. They want people right in the middle. To me, to be really effective, these studies should have to take everyone, unless there is some contraindication that would cause health problems. How else can you find out who will really be helped?

I would, if I didn't have to work for a few weeks, give my body to Johns Hopkins to have them run every study they could, however. I think. . .

[JimmyLegs]

I've had RLS for about 7 years now. At one point my family doc referred me to a sleep clinic where they put me on Requip. Because I had augmentation problems with the medication and needed to take it around the clock, the clinic asked me to participate in a study using the new patch. This was about a year and a half ago. For different reasons, I was not able to participate in the study. I have not been back to the sleep clinic and do not know how the studies turned out.

I would say to anyone who thinks they have RLS that the first step to take is to make sure you evaluate all the medications you currently take with someone knowledgable in pharmacology. This will not necessarily be your doctor as I have found out. I was diagnosed with interstitial cystitis around 7 yrs. ago and put on the medication amitriptylene (Elavil) as a pain blocker. Four doctors, including the so called specialist at the Sleep Clinic, where aware of 1)my RLS complaints and 2)my taking amitriptylene. No connection was ever made and I did not make the connection in reading the pharmacy print-out I received with amitriptylene. Fast forward thru the last 7 years to the present when in desparation of relieving my RLS symptoms, I went to a person legitimately trained in hypnosis. I will try almost anything now.

She took my medical history including the medications I was taking and stopped dead when I mentioned the amitriptylene. She checked her little electronic pharmacy thingy and asked if she could contact her husband, a doctor, who was very aware of medications and their side effects.

I was dumbfounded at what she proceeded to tell me. One of the side effects of amitriptylene is extrapyramidal symptoms including akathisia. The definition of akathisia is as follows:

"often extremely unpleasant subjective sensation of "inner" restlessness that manifests itself with an inability to sit still or remain motionless".

I couldn't believe what I was hearing. I immediately started to ween myself off of the medication,50mg daily,and am now down to 10mg daily. I probably won't know for sure for several weeks if the amitriptylene has been the cause of my RLS, but I am hopeful since the time period in which I have had RLS and the taking of this medication coincide.

Wish me luck. I will come back in about a month to 6 weeks and let you know if this tactic has been successful. In the meantime, please double check the side effects of all medications you are currently taking.

Good luck to you all.

Signed - Hope to be JimmyLegs no more!

[ViewsAskew]

Good luck! I hope it works.

You have an extremely important point. When anyone "gets" RLS suddenly or it becomes aggravated quickly, medications are often the culprit. In addition to checking the meds, I highly recommend carrying one of the med cards with you. Too many people have had horrible epidodes in hospitals after being adminstered some substance that worsens RLS. One women actually ended up with a knee injury from the violent kicking she did after being administered some medication in an ER.

You can get a medical alert card here: http://www.legsmove.org/ .

[cornelia]

Not with me though. I was not on any medication and my RLS was within 3 months severy and 24/7. Well, we are all different, aren't we?

Corrie

[becat]

Ann's right, they have been testing that patch here in the states as well.
One of my members of my support group was in the study and I feel got the real stuff not the placebo. She did well and I think it was helpful that she had not been on any meds at all before the study.
I'm not sure if I could do another DA anyway. Tried the other night and with in hours I was scratching like I had fleas. LOL
It's got it's place for us, but hopefully with more studies on it, they will figure out how the rest of us can use DAs as well.
hugs Lynne

[rfishburn]

Has anyone else tried the patch? My tolerance for opiates got to high so they want me to try this patch now. Now sinemet worked wonders untill I got augmentation but I had never slept better...Just thinking outloud again.

[ViewsAskew]

Over the last few years, I've had to slowly double my methadone dose. A bit here, a bit there.

I started experimenting awhile back.

I haven't tried the patch, but what seems to be working relatively well is to take a 1/2 opioid dose and a 1/2 Mirapex dose two nights in a row. The next two nights, I go to 3/4 opioid dose. It keeps me from needing that extra bump in the opioid. If I try to push the 3/4 dose to 3 nights, I can't, though. And, if I try the dopamine agonist more than 2 nights, I start to get mild augmetation issues.

So far (just in about 2 weeks), I haven't had augmentation issues at only 2 nights.

This doesn't answer your question about the patch, sorry. Just throwing in what happens to be working for me to keep the methadone dose to 10-15 mg, instead of at 20 every day.

[becat]

Hey Burn,

Well, I did have to go back on Mirapex again for a while last year. It worked so well the first week, sleep was heaven. I was not offered the patch, but was offered Requip. Quickly said no and took the Mirapex again at a very small dose.
It only took less than 3 weeks before I augmented again. I think now, that I can use it for really bad cycles, but only for a very short term. To gain control, but not as an extended treatment.

My doc was one of the researcher on the patch here in the US. I had many of my new group members that went for the study and I haven't heard from them in a long time, so I see that as good news.
The patch keeps the DA in your system in a constant manner and at a low level. As Ann described. It seem to help several that I spoke with. I think it's a good idea as well in that it's not like, taking a pill and waiting 2 hours for it to kick in and then your without until you take another pill. Hard to catch the symptoms before they hit. So the patch is able to do that for you.
I choose to go that way for the "girly Hormones", because I liked the theory of the constant intake.

I was allowed to continue the pain meds, and I have the same problem, tolerance wise.
However, it was and now is the only thing I take for the RLS. So I was shocked when I got a statment about why in 4 yrs I had to raise my dose? DUH, tolerance maybe? Just like with many meds.....however, since it's a pain med. I assume they are always looking for addiction problems. As you and I have talked about before.

If the doc had a sample, I would, just for myself, try it. But if I also suffered with pain, I would still want help with that as well. Just like I get help with my chronic insomnia, again, which changes meds around all the time.

Hope something works or they give up on hounding you about your meds.

Lynne

[rfishburn]

I hope it works too but my testosterone is badly out of wack also....we will see.