would like to hear from others weaning off of dopamine meds

[Chewie]

I have just joined RLS.org, hoping to hear others experiences with weaning off of dopamine meds. I was on various doses of generic Requip for about 5 years, after being diagnosed with RLS and PLMD. Experienced augmentation. Added the Neupro patch last Spring, and was switched to generic Mirapex (along with the Neupro patch) in July. Doing very well right now, but my dr. anticipates augmentation eventually with the Mirapex. He is suggesting that when that happens, I am to wean off the Mirapex and switch to Horizant, keeping the Neupro patch. His description of the weaning off process sounds awful and I'm very anxious about it even though I do not need to do it yet. I realize he is probably giving me worse-case scenarios, but basically he said I'll have major RLS for quite sometime while weaning off and then on to the Horizant. I'd be interested in hearing others experiences. Thanks!

[debbluebird]

Welcome to the board, but sorry to hear of your difficulties. This is just my opinion. I've had WED/PLM since around 1990. I took Mirapex for about 15 years. I augmented on it before that, but didn't know what was happening to me. My doctor at the time just thought something else was wrong with me. When I did stop Mirapex, at first I tried to wean down, but that never worked. I found that I just had to quit cold turkey. Also had to take opioids during that period. For me it lasted about 2 weeks. It can last longer for some people. It's better if you can go through it without working. Also I don't believe that it doesn't work to just switch from one DA to another. Most people will say that you need time off of one before you start another one. I've had periods where I was taking four and five medications at a time. Finally I figured out some of the things that have made my WED/PLM worse. Caffeine is a major one and aspartame is another. On the site you will find a list of many things/meds that makes WED worse. Right now I just take Methadone 5 mg, one at 5pm, one about 11pm or midnight, depending on when I go to sleep and the last one around 5 am. I happen to be in a good period right now. It's a roller coaster ride. You never know when it will get worse. Good luck to you.

[Polar Bear]

Chewie, Welcome. Your concerns about what happens in the future is something that affects us all.
To come off a DA some folks have tapered by reducing the dose week by week by shaving off the tiniest scrape of medication, and it took a long time and several attempts before it worked. Cold Turkey it seems, is a tough road but much quicker.

When your GP says you will have a horrendous time coming off DA did he mention that you would need to be taking a strong opiate to help you get through it. Not just toughing it out.

It's good that he seems to at least have WED/RLS knowledge and how to treat the condition. You can read up on it and try and stay one step ahead i.e. be able to give an opinion and make a case for whatever drug is likely to perform best should augmentation occur.

The second link in the signature of ''badnights'' tells of augmention.

[ViewsAskew]

I don't think any of us who've stopped a dopamine agonist because of augmentation could not say anything other than it wasn't much fun. If you don't have an opioid (and the current literature recommends that WITH an opioid is the ONLY way to do it), it's miserable. With an opioid, it's OK. Not fun, but OK.

Please also consider if you should even take a dopaminergic drug again. Current research suggests that once you augment severely and on multiple dopaminergics, that you should never use them regularly again. I've augmented on every one of them - now I only use them intermittently, but never more than one day at a time without stopping.

Welcome to the board.

Edited for clarity Oct 5

[Chewie]

Thanks to you all for your information. My dr. has a 3 week weaning off plan that does not include adding any other meds until I believe the 3rd or 4th week I would start on the Horizant. There is so much interesting information on this site. I am thankful to have found it. I know it's kind of silly to be dreading it now while I am doing fine on the Mirapex, but I know from experience with the Requip that augmentation could start tomorrow or in 6 months. I've had nights where I paced and paced and paced, feeling exhausted but not being able to sit or lay down without excrutiating RLS, and getting very little sleep, but never in a row - just here and there. I can't imagine going through it night after night. Ugh.

[badnights]

Please read the links in my signature below. The first is the WED Foundation's informational brochure about augmentation, sort of an introduction and cautious recommendations. The second links to some literature. These papers show a link between low ferritin levels and the increased likelihood of augmentation, and higher ferritin and improved RLS/WED symptoms. Others of the papers I link to describe treatment protocols for people with RLS who are augmenting. I specially recommend Dr B's paper and the extract from the Clinical Managment book, both of which you might want to print and present to your doctor and ask him what he thinks of them. The reason for printing both is so your doctor doesn't think Dr B, the sole author of the one paper, is alone in his recommendations.

Good luck.

[crl363]

I am curious of the time frame when using an opioid to wean off a DA. I know is can vary upon the individual but has anyone come off of it in a week or is it closer to a month? Do you notice the effect right away or does it take time to work. The reason I am asking is because I am about to due this and I was wondering what to expect.

Bob

[ViewsAskew]

I am curious of the time frame when using an opioid to wean off a DA. I know is can vary upon the individual but has anyone come off of it in a week or is it closer to a month? Do you notice the effect right away or does it take time to work. The reason I am asking is because I am about to due this and I was wondering what to expect.

Bob

As you noted, it does depend. It seems potentially related to how severe the augmentation is. Mild = maybe 4 days to a week. Moderate = maybe 1-2 weeks. Severe = closer to 3-4 weeks.

BUT, that's just my guess based on people's comments here over time. I was severely augmented for over a year - it took me 3-4 weeks before I felt pretty good, and actually took about a year before my symptoms settled down completely. 3 or 4 months into that first year, I still had 24/7 symptoms. At the end of a year, I'd say it was more like 18/24 - I had at least a few hours everyday without worry of symptoms. I hadn't felt that in a LONG time.

I can only tell you how it felt for me. Immediately things were better. I could sleep again. Mine was so bad that I'd not slept more than 20-60 minutes a day for at least a month or so. So, with the opioids, when the dose was right, I could sleep at least 4-5 hours. So, that was extremely wonderful. But, I still had symptoms and breakthrough. After 2-3 weeks, I could tell that I had less breakthrough and the symptoms were milder.

Good luck with it!

[crl363]

Wow! You have had a very difficult time with this. Mine is not that bad when compared to you. I am hoping I fall into the mild to moderate range you have outlined. I appreciate your help. I’ll use your reference as a rough time frame for what to expect.

Bob

[ViewsAskew]

Wow! You have had a very difficult time with this. Mine is not that bad when compared to you. I am hoping I fall into the mild to moderate range you have outlined. I appreciate your help. I’ll use your reference as a rough time frame for what to expect.

Bob

I wish you the best of luck. You know, I had a thought today....stopping a DA is ALWAYS better than augmentation, IF you have an opioid. WIthout one, it's indescribable. Most of us who've tried that (I tried at least twice, maybe three times) don't succeed. But those of us with the right dose of an opioid always feel that this period was relatively easy compared to being augmented.

[crl363]

Thanks for your advice. I have learned a lot here. With help, I have found an awesome doctor who has just prescribed methadone for me. I would not attempt to come off a DA without an opioid and that is solely based on you and other people’s suggestions here. I know I wouldn’t make it without one. Thank you!!

Bob

[ViewsAskew]

Thanks for your advice. I have learned a lot here. With help, I have found an awesome doctor who has just prescribed methadone for me. I would not attempt to come off a DA without an opioid and that is solely based on you and other people’s suggestions here. I know I wouldn’t make it without one. Thank you!!

Bob

Should be relatively easy, then, Bob. It's still not a lot of fun, but at least for me,if was a LOT better than augmentation.

[badnights]

I'm late on this one, but I should note that it's not always unendurable without opioids. When I augmented on ropinirole, it was pretty bad, so that even dancing about while standing at a raised desk to work during the day was not taming it. When I stopped, without opioids, it was dreadful but not any worse. Maybe I don't recall correctly, but it seems to me it was only as bad as it had been - which was dreadful - and no worse. Also, it only lasted about 10-12 days. I went onto pramipexole immediately, as told to by doctor and pharmacist, but against my own budding knowledge, so I kept the dose at the minimum 0.125 even though it was not covering off any (or much of) the symptoms. And after about a week and a half, I was - well, I wasn't normal and my symptoms weren't covered, but I think the augmentation was over.

I never did stay on pramipexole because it made me need to sleep all day (in retrospect, maybe I was just catching up).

Off topic, but: I had a worse horror-show than that, but it wasn't augmentation. It was a weird withdrawal effect from gabapentin and codeine. I don't know which one caused the problem but it was the worst nightmare I've ever lived through. At the time I thought it was my baseline symptoms, worsened 1000-fold, but by the end of a month, the symptoms had calmed down somewhat - by half? how does one estimate something like that? - so I suppose it was about half withdrawals of some kind. So I thought it was gabapentin withdrawal, even though no one else has heard of such a thing. Later for a while I thought it might have been codeine withdrawal, because opioid withdrawal is very much like WED symptoms, but that doesn't sit right with me because I didn't have any nausea and sweating. I have experienced mild withdrawal from hydromorphone since then (including on a daily basis for almost a year, as my nightly meds wore off in the day!) and it is like bad WED plus nausea and cold sweats.

Anyway, just in case chewie or someone else doesn't get prescribed an opioid to make the DA withdrawal bearable, don't despair. some people have it easier than others. (That doesn't excuse your doctor for not following the right path, though, so make sure your doctor has that information .)

[ViewsAskew]

Maybe it depends on how much and how long a person has augmented. Dr B s never recommends (in his patient letters) trying it without - he suggests that it also takes longer without. But, as you noted Beth, people have done it without. I can only recall a handful of stories of people who did it without on this board - though I am sure there are many others. Unfortunately, I recall more fails by people who tried and couldn't do it without medical assistance.

If you can't get an opioid or if you just want to try without, it's absolutely worth doing - because it can be done. If you get through it, that's great. If you feel you can't manage after a few days or a week, stop and see if you can get something. And, if you can take off a few days at work, it may help. I know I didn't sleep at all when I tried it - so working was completely out of the question - much too tired to drive or accomplish anything.

[badnights]

I forgot to mention, I wasn't working when I did it. I wasn't on sick leave - I had taken time off to work on my Masters thesis! I didn't get anything done. I couldn't have gone to work, no way.