Neupro Patch

[badnights]

. I thought about asking the Dr. to change the Percocet to Methadone, but I also read the side effects of Methadone, it can cause insomnia, and if I still have to take the Mirapex anyway I don't think I'll take the opioid. I thought I could get off the Mirapex with the opioid but apparently not.

veldon:
We have to watch out when we read about side effects; they are not inevitable or even likely. The manufacturer has to list every side effect that shows up in trials in even only 1 or 2% of the people using it (I am not sure of the exact percentage, but it's very small). Many drugs list insomnia as a possible side effect, and that doesn't mean you will get insomnia. You won't know if you will until you try, and depending on the drug, chances may be low. With methadone, you may be more likely to get sleepiness than insomnia.

As for your last sentence, you were right the first time! You should be able to get off the Mirapex using an opioid. In fact, since you're augmenting, it is my understanding that you ought to get off the Mirapex completely, will probably need an opioid to deal with the increased symptoms of DA withdrawal.

[badnights]

Ann, do you have a recent ferritin measure?

[ViewsAskew]

I understand that you want to cover all bases in this Neurontin trial, but I think I would be nervous about trying it a second time, once everything's back to normal. What if every time we augment, we become less tolerant of DAs and more likely to augment? Then your only remaining option for relief from the methadone side effects, of using pramipexole for 2 days every 7, might be lost.

It must mean something that you augmented so quickly on all the dopamine drugs. If only we knew what the difference was that's causing you to augment so fast... it might help explain augmentation in general.

Thanks for making a record of your experiences here; I wish some RLS/WED specialists would read this board. They would have to wade through a lot of irrelevant stuff, but I bet it would be educational.

I've had the same thoughts. I just know that Dr B isn't going to think this is augmentation. Especially since I didn't take it at the "right" time. I don't remember him telling me to use it in the AM, so I started it at night. But, I honestly don't think this is related.

I do so wish we knew what was different about me - unless it's solely ferritin. I do not have a recent measure. Last time was about 38 and I took iron faithfully for a couple years after that. I only recently stopped because I wanted to try an infusion. Then my insurance changed and now that is unlikely to happen until I see what insurance options are available come January when the insurance exchanges are in place (a new Healthcare Act reform).

I also wish doctors would read this board. Yes, a lot of us talking of other stuff, but many threads that would inform them on ways to think about things, research to consider, and so on.

[ViewsAskew]

Ann, do you have a recent ferritin measure?

I think I already answered this - no, I do not. I was trying for a physical in June, but couldn't make a decision on a new doctor.....guess I just need to throw a dart and get it done. I get one physical a year. I doubt they will cover all the labs I need, but hopefully ferritin doesn't cost that much.

[Polar Bear]

If you have a physical which is 'capped' cost wise, is it possible if necessary for doctor to do a ferritin check and drop some other check in its place.
However, I don't imagine that it is a particularly expensive check, relatively speaking.

[ViewsAskew]

If you have a physical which is 'capped' cost wise, is it possible if necessary for doctor to do a ferritin check and drop some other check in its place.
However, I don't imagine that it is a particularly expensive check, relatively speaking.

Here, it's all about how they code things. If you understand the codes, you can sometimes get a doc to submit one for another. The problem with blood work is that to get it done, you have to use the right code .

[badnights]

I am staggered, every time I read of insurance coverage affecting people's health, by how lucky I am. All my basic health care, including lab costs, is covered by the gov't. Medication is not covered, but my employer's drug coverage plan pays 80% of it. I don't know if an iron infusion for WED would be covered, but I might be able to get the Edmonton sleep specialist to refer me for it, in which case some of it at least would be covered.

[cornelia]

Ann, I had almost exactly the same reaction to Neupro like you, not good. I stopped it after a week. All the horrible symptoms you got with it I had too. Don't want to take it ever again. Only I didn't/couldn't take the trouble you took to talk about it on this board and IAM GRATEFUL YOU DID>

Dr B has said on his Q&A pages a few times that once someone has augmented on a DA that it likely is to happen again with Neupro. Also that the longer or more often we use them the shorter they will work.So personally I think that the way you handle Pramipexol by taking it every other or 3rd day is the best you can do; it's my experience too.

I always think of an article dr Montplaisir wrote I think in 2004 in which he said that refractory patients are best off with opiates and a little bit of an DA.

You might remember that this year a group of researchers used the term 'malignant' RLS for these refractory patients and suggested the same meds regimen. But they added that it would be advisable to rotate opiates. We have talked about this on this board and this is the first time I saw opiate rotation mentioned in RLS research.

Personally I think that sooner or later many refractory patients will not be able to have a regular job. Maybe they can work from home, but it will always be very hard. We don't want a life like this, but it is what it is. We soooo need to have better meds and the researchers to figure things out. They say that RLS is related to lower income. I get that!

Corrie

[ViewsAskew]

Ann, I had almost exactly the same reaction to Neupro like you, not good. I stopped it after a week. All the horrible symptoms you got with it I had too. Don't want to take it ever again. Only I didn't/couldn't take the trouble you took to talk about it on this board and IAM GRATEFUL YOU DID>

Dr B has said on his Q&A pages a few times that once someone has augmented on a DA that it likely is to happen again with Neupro. Also that the longer or more often we use them the shorter they will work.So personally I think that the way you handle Pramipexol by taking it every other or 3rd day is the best you can do; it's my experience too.

I always think of an article dr Montplaisir wrote I think in 2004 in which he said that refractory patients are best off with opiates and a little bit of an DA.

You might remember that this year a group of researchers used the term 'malignant' RLS for these refractory patients and suggested the same meds regimen. But they added that it would be advisable to rotate opiates. We have talked about this on this board and this is the first time I saw opiate rotation mentioned in RLS research.

Personally I think that sooner or later many refractory patients will not be able to have a regular job. Maybe they can work from home, but it will always be very hard. We don't want a life like this, but it is what it is. We soooo need to have better meds and the researchers to figure things out. They say that RLS is related to lower income. I get that!

Corrie

Thank you for writing this, Corrie.

Glad to know someone else responded as I did. It's about 64 hours since I stopped it and I have a total of 5 hours sleep. It's 9 AM and I normally would be sleeping soundly at this time of day. I haven't even slept 5 minutes in the last 20 hours. I thought it was getting better, and in a way it is, but while the waking symptoms are indeed less annoying, the symptoms occuring when I try to sleep are not being touched by the methadone. Do you remember how long it took you to recover? I really hope it's not like the original augmentation - that was 3 weeks. I am not going to be able to work at all on Monday if this keeps up.

I don't know how to rotate opioids. I have only found one I can take because of side effect issues. I think there are two I haven't tried - maybe I should. I do remember the terms and the article.

I hope you're right about Dr B. I got the feeling that he expected I'd not have a problem this quickly with Neupro. And, as this drags out, I'm not looking foward to taking it again - and may not if I can avoid it.

EeFall wrote that Dr Earley (or whoever he saw at Johns Hopkins) said that (I'm quoting his post), "He said the first time I augmented (about 2008) he would have never have put me back on it again. He believes that once a patient augments on a dopamine agonist that the patient should NEVER use it again. He thinks it creates a permanent problem within the brain that will never get better again using a dopamine agonist and sets up a vicious cycle (as I have been in for years)."

I'd love to know what he feels that permanent problem is and what makes him feel this way. There are many doctors who do suggest using them again at some point.

I am sad that we are more likely to have heart problems and other problems, but for the first time in a long time, I am hopeful that more research is going to be done in the next five years than we've seen before. I doubt we'll have new meds based on this for at least 5 to 15 years, but I do think in as little as 15 years, we may be looking at a very different picture.

[ViewsAskew]

Update:

I managed 3 hours sleep today - all at one time in the afternoon. So, that was nice. I'm amazingly awake given all that's happened . I normally space out the methadone over an 8 hour period, to try and cover symptoms about 18-20 hours of the day. But, that hasn't been working. Tonight I'm trying 2 doses, just 2 hours apart - one of ten mg and one of 15 mg. It's a lot at once, but I can't seem to get it to cover the worse part of the night.

Otherwise guess I'll be sleep in the later morning or afternoon for awhile....

[Polar Bear]

I have logged on and see it is about 5 hours since your last post. I truly hope that you are fast asleep,

[cornelia]

Gosh, to have to wait another 15 years for better meds! I'm 66 and I might very well be in my grave! But good for you Ann and others in this group who are much younger. Something to look forward to.

I'm glad you feel better after a few hours of sleep. I can't remember how long it took before I was back to baseline, but certainly not within a week. My experience is that when I mess with my meds it takes more than a few days to settle down. If I'm not mistaken I read somewhere that our brains are flexible but slow to adjust?

As for the experts: they have different opinions. This dr in Seattle (not dr Early, we don't know his name) might well be right or not.

This is what the book written by Hening, Early, Chokroverty and Allen says about it (maybe this is the answer you are looking for:

"There is a concern that augmentation represents a significant disruption of the dopaminergic system that may become a major problem for the patients later in life. The delayed onset of augmentation suggests some slow but persistenly developing proces disrupting dopaminergic function. We assume that at some critical point this process stabilizes and does not continue causing dopaminergic disruption. But the delay in expression of the problem may reflect a slow, persistent process continuing indefinately. In such a situation the effects of this slow, persistent process could be masked for years by slow increases in doses of the DA's. It will take several years of extensive clinical experience treating RLS with these meds before we will know the long-term sinificance, if any of RLS augmentation".

My first instinct is that we have to be very very careful with the DA's.

Corrie

[ViewsAskew]

Gosh, to have to wait another 15 years for better meds! I'm 66 and I might very well be in my grave! But good for you Ann and others in this group who are much younger. Something to look forward to.

I'm glad you feel better after a few hours of sleep. I can't remember how long it took before I was back to baseline, but certainly not within a week. My experience is that when I mess with my meds it takes more than a few days to settle down. If I'm not mistaken I read somewhere that our brains are flexible but slow to adjust?

I wish it would be sooner, but it takes a minimum of 10 years to get a drug to market once the drug is developed. We don't even know what to develop it to do! I just don't see how we could get there faster, but I sure hope so.

I definitely am better today. I still have symptoms I normally wouldn't, but I can tell it's fading. I stopped the drug on the first day it was apparent, so hopefully that helped prevent it from doing as much damage as it could have.

As for the experts: they have different opinions. This dr in Seattle (not dr Early, we don't know his name) might well be right or not.

EeFall went to a doctor at Johns Hopkins who said this, if I understand it correctly. So it very well could be Dr Early.

This is what the book written by Hening, Early, Chokroverty and Allen says about it (maybe this is the answer you are looking for:

"There is a concern that augmentation represents a significant disruption of the dopaminergic system that may become a major problem for the patients later in life. The delayed onset of augmentation suggests some slow but persistenly developing proces disrupting dopaminergic function. We assume that at some critical point this process stabilizes and does not continue causing dopaminergic disruption. But the delay in expression of the problem may reflect a slow, persistent process continuing indefinately. In such a situation the effects of this slow, persistent process could be masked for years by slow increases in doses of the DA's. It will take several years of extensive clinical experience treating RLS with these meds before we will know the long-term sinificance, if any of RLS augmentation".

Makes sense.

My first instinct is that we have to be very very careful with the DA's.
Corrie

I've felt that way for years! I honestly would never have tried this given my history with DAs if I didn't feel I had to. I don't want to be an obstructionist patient - one who blocks my doctor at every turn. To keep a good working relationship, I felt I needed to. But, I also want a better solution. I can't deal with the depression that the pramipexole causes. I lose a day of my life to it every time I take it. It's miserable. I was hoping I could use this instead. I also am so foggy from the opioids and my sleep pattern is so confused - I really hoped this would help resolve that.

But, there was the problem of titrating to the dose. That took 3 to 4 days. Then I had to evaluate how it worked, another two days. I ended up staying on it longer than I intended.

In retrospect, I should have stopped as soon as I knew the dose. Then I could have tried it again in a few days at the right dose and used it for another 3-4 days.

I'm not sure I'd recommend this for anyone who augments really fast. I can get away with a day of pramipexole, but you can't use the patch for a day because it takes up to 48 hours to build up in your system. If someone augments in a month, they could easily take this a week or two without issue. But, given that I always augment in a week or shorter, this isn't a good option.

[badnights]

Personally I think that sooner or later many refractory patients will not be able to have a regular job. Maybe they can work from home, but it will always be very hard. We don't want a life like this, but it is what it is. We soooo need to have better meds and the researchers to figure things out. They say that RLS is related to lower income. I get that!

I have been struggling to keep my head above water for the last 5 years, since this disease flared up after an operation. My career ended at that point, at least as far as I can see. Maybe I will have a different future, and I keep battling for one, but so far no good.

Did I mention that Dr. Allen delayed his retirement to pursue the glutamate connection (the ongoing clinical trial at Johns Hopkins)? That's how important he believes it is. One thing I wanted to ask him: their theory explains the involvement of dopamine, iron, and glutamate (which is involved with GABA which is affected by anti-convulsants like gabapentin), but no mention of how opioids might fit in. Any final WED explanation will have to account for the beneficial effect of opioids and describe what dysfuntion is affecting our internal opioid systems. But unlike just about every other WED research group, they are looking at hyper-arousal as a significant symptom, and I like that.

My first instinct is that we have to be very very careful with the DA's.

Sometimes I wonder if I am being too anti-DA with the comments I make on this board. After all, some people are quite happy with them after 10 years. But so many people have such huge problems, I can't bring myself to say they're great. I feel deep down (not scientific!) that they are very bad for WED patients, and are made more so by their masquerade as beneficial drugs.

Ah - I was going to say something else, but the zopiclone is kicking in, and I cannot keep a train of thought on the rails.

[rthom]

Ann
Don't know if it's night there (4:30 am here), but just wondering if you had a better night tonight and if you think you might get some sleep in the am?