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2restless
Posts: 6
Joined: Sun Jan 28, 2018 3:10 pm

Just joined

Postby 2restless » Thu Feb 01, 2018 3:03 am

Hello, my husband has had RLS for 40 years. Symptoms have gotten so severe we went to Mayo in early January to seek help. He is on 3 mg Mirapex, and was taking 900 mg Gabapentin with no relief. Options from Mayo included Neupro, Horizant, Lyrica ( at 150 mg bid- we previously had tried 75 mg bid with no effect), IV iron, and finally opiates. I will say, the doctor we saw there was marvelous and compassionate. After discussion with our doctor here, we decided to try Horizant 600 mg, and after2 weeks, to achieve steady state, begin a slow wean of the DA. I misunderstood the directions, and started the slow wean immediately, cutting back the Mirapex by 0.25 mg for 10 days, then another 0.25 mg for 1 day. Symptoms during this time were horrendous - my husband went 60 hours with no sleep and symptoms in all extremities. We went back up to the 3 mg dose, but symptoms remain awful. I called Mayo - they told me of my mistake, agreed with going back up to the 3 mg dose, holding there for another 7-10 days before beginning to wean. This will put us around Feb 6.

The problem is, his symptoms remain severe. He might get 4 hours of sleep a night, but he still awakes at 3 am with symptoms, and has them frequently throughout the day and evening. We don't know what to do. I have been reading about all of you who have gone cold turkey. It seems like we may need to do so also, as the slow wean is a nightmare also. I have purchased Buchfuhrer's book, which is informative and helpful. My hope is that we can get the Mirapex down to 0.5-1 mg, continue with the Horizant, and maybe use a small dose of an opiod to control symptoms.

One thing the Mayo doctor told us that Buchfuhrer disputes: she mentioned that my husbands RLS was not a sign that his RLS was getting worse as he ages (he is 69 and has had this since his 20s), but that the DA drugs were worsening his symptoms, because of the changing levels of Dopamine in the brain (hence the options for LA Neupro). However, Buchfuhrer stated on page 180 that worsening symptoms may be due to disease progression, and the only way to tell the difference is to try to wean the DA drugs and see if things improve.

Are any of you on low dose DA along with Horizant? DId it work? Did you need an opiod too?

Any help you can give us would be appreciated.

Rustsmith
Moderator
Posts: 3113
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Just joined

Postby Rustsmith » Thu Feb 01, 2018 3:53 am

I am sure that others will chime in as well. I would agree with Dr B that it isn't possible to tell whether his symptoms are just due to the Mirpaex augmentation (which is virtually certain) or a combination of progression and augmentation. The only way to know is to completely get off of the Mirapex, which is going to be very difficult.

Before you decide to go cold turkey from such a high dose of Mirpex, be aware of the fact that there is something called DAWS (Dopamine Agonist Withdrawal Syndrome), which can result in permanent problems. It doesn't hit everyone, but stopping cold turkey from 3mg might be increasing the chances. That is probably why his doctor wanted him to step down his dose before actually quitting.

As you have seen, Horizant is not going to be sufficient to cover his dopamine withdrawal issues even during this initial stage. And it will get worse before it gets better if you don't use an opioid.

Also, I have recently seen where Horizant or gabapentin are only effective for maybe 60% of patients (that number might be off some). So there is no guarantee that he won't need something else even once he is off of the Mirapex.

I was faced with a similar situation 2 hrs ago. I was on 1mg Mirapex, I was heavily augmented and like your husband, I had been having RLS issues since my 20's and was then 63. My doctor and I agreed that gabapentin wasn't going to be sufficient to manage my RLS and therefore I was going to need to be on a low dose of opioid for the foreseeable future. She gave me 5mg of methadone and I immediately cut my dose of Mirapex from 1mg to 0.25mg (which I still take to manage my severe PLMS). The transition when seamlessly without any of the problems that your husband is already experiencing. Of course, with the current opioid hysteria, I am continually worried about getting cut off (by someone other than my doctor).
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.

stjohnh
Posts: 532
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Just joined

Postby stjohnh » Thu Feb 01, 2018 4:13 am

Well, I am currently on a similar treatment combination. I take mirapex, gabapentin and kratom. The gabapentin is similar to the Horizont and the kratom works somewhat similar to an opiate. I'm 70 and I've had RLS since my mid-30s.

But the description of your husband symptoms and dosage of Mirapex is almost a guarantee that his problem is augmentation on the dopamine agonist.

Whatever else you do, he has to get off the Mirapex somehow. There are varying opinions as to the best way of doing it, however there are no good options. Getting off the Mirapex, as your husband has found is pure torture. I did that 2 years ago, as have quite a few folks that post on this bulletin board. All will tell you the same story: it is pure hell, torture, among the most awful experiences they've ever had, Etc.

High doses of Mirapex cause the dopamine receptors to go crazy, and they have to be reset by being completely off the Mirapex for a week at least.

After getting completely off the Mirapex when I augmented two years ago, I restarted at 0.125 mg daily, and vowed never to go above that again.

RLS specialists have been gradually been moving down the maximum recommended dose of Mirapex. Certainly all agree that 1 mg is too much.
Blessings,
Holland

april34
Posts: 23
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Fri Feb 02, 2018 7:02 pm

I'm in a very similar situation. I've had RLS as long as I can remember but I was able to walk it off in years gone by. More recently, I couldn't go on long trips before having to stop and walk it off. About 5 years ago, I was referred to a sleep clinic and was placed on Pramipexole (0.25) @ 2 pills at bedtime. Over time that was gradually increased to 5 per day. I also tried taking magnesium and RLS homeopathic pills to ease the discomfort. Nothing really help much. Pramipexole did help me to sleep but it also had side affects leading to memory loss and sudden sleep. This past year (2017) while I was in hospital and in convalescent care from having suddenly fallen asleep and broken my left tibia, I was given Clonazepam to calm my RLS and some pain meds. Once back home Clonazepam was stopped and I continued on with Pramipexole.

This past November, my family doctor recommended that I wean off the Pramipexole gradually in favor of Gabapentin (100 mg) @ 2 capsules 2 hours before bed. Once Pramipexole was no longer being taken RLS came back and prevented me from getting any sleep. The doctor increased the dosage to 3 capsules before bedtime, but that didn't change anything, and I still needed to take a Pramipexole pill just to get some rest.

My daughter gave me some MAGsmart to try, but that doesn't appear to help either.


So that is my story as it stands right now. I look forward to any suggestion anyone might have to help bring lasting relief to my restlessness.



Edith

stjohnh
Posts: 532
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Just joined

Postby stjohnh » Fri Feb 02, 2018 7:37 pm

Edith, I suspect that when you were on the five tablets of pramipexole daily that you were augmenting. Augmentation occurs when a person with RLS is taking higher doses of a dopamine agonist like pramipexole and symptoms worsen in spite of that. That is quite a high dose and augmentation is extremely likely. I don't quite understand what your current dosing is like and what your current symptoms are like. Could you clarify exactly what you're taking now and what your symptoms are like with what you are taking now?

It sounds like your doctor is on the right path in trying to get you off the pramipexole, but I also suspect he doesn't have a whole lot of experience with the process of getting people off pramipexole. It is extremely difficult.

To get off pramipexole you will need to stop it, that causes a tremendous temporary worsening of your sleeping and leg jumping problems. It can be made somewhat better by taking an opioid such as Vicodin or Percocet, at least temporarily. It's possible that the gabapentin may be strong enough to control your RLS symptoms, however it is not strong enough to help you get through the withdrawal phase of getting off the pramipexole.

The RLS Foundation has a brochure available to download that is oriented toward helping doctors treat augmentation with pramipexole. I suggest you download that brochure and take it to your doctor. I'm sure one of the moderators will post a link to that brochure shortly.
Blessings,
Holland

april34
Posts: 23
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Sat Feb 03, 2018 2:07 am

Holland, thank you for your thoughts. I was given Percocet while recovering from the broken tibia but that was only for a few days and then switched to Clonazepam for about a week. Pramipexole was reintroduced until the switch to Gabapentin in November. Everything seems to go well as long as I take a Pramipexole pill if I need it. If I experience leg pain the doctor said to take Tylenol. Having Osteoarthritis in the knee is an added irritant.
Edith

stjohnh
Posts: 532
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Just joined

Postby stjohnh » Sat Feb 03, 2018 4:50 am

Edith, so you take one pramipexole tablet 0.25 mg occasionally? How many times a week? And what happens on the nights that you don't take a pramipexole tablet, what kind of feet or sleeping symptoms do you have? And you're still taking the Gabapentin at 300 mg every evening?
Blessings,
Holland

2restless
Posts: 6
Joined: Sun Jan 28, 2018 3:10 pm

Re: Just joined

Postby 2restless » Sat Feb 03, 2018 3:46 pm

Rustsmith, thank you for the information. I had not heard of DAWS and have been reading about it. Sounds awful. I've spoken with Mayo twice this week, we will hold my husband's dose at 3 mg for 2 weeks, and then attempt a wean again. They do not recommend an abrupt withdrawal. I let them know that I gave him 5 mg oxycodone one night (his left over tablet from knee replacement a few years ago) and within one hour his symptoms stopped and he was able to sleep. They are aware that he may need opiates to get off the Mirapex, but mentioned that often once people start opiates, they are on them henceforth. My hope is that he would only need them for the taper, and then perhaps periodically. We will also talk with his doctor here about strategies for weaning. I am on a mission to get him off this enormous dose of Mirapex!

2restless
Posts: 6
Joined: Sun Jan 28, 2018 3:10 pm

Re: Just joined

Postby 2restless » Sat Feb 03, 2018 3:57 pm

stjohnh
Thanks for your reply. I am interested in kratom. My sister-in-law mentioned it to me and I did some reading, but am pretty unfamiliar with it. Is it addictive? Where do you get it - Amazon? How well does it work? Are there side effects or drug interactions with it? What does the medical community think of it?

stjohnh
Posts: 532
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Just joined

Postby stjohnh » Sat Feb 03, 2018 4:44 pm

2restless wrote:stjohnh
Thanks for your reply. I am interested in kratom. My sister-in-law mentioned it to me and I did some reading, but am pretty unfamiliar with it. Is it addictive? Where do you get it - Amazon? How well does it work? Are there side effects or drug interactions with it? What does the medical community think of it?


Kratom has not been evaluated by the General Medical Community. It is a ground up leaf, the trees grow in Indonesia and surrounding areas. The powder has not been approved by the FDA or other regulatory agencies for any internal human use.

It is available online from numerous vendors, a common one is SoCal herbal remedies

https://www.socalherbalremedies.com/pro ... erbal-tea/

For most people it works fairly well, some people need to take a small dose of a dopamine agonist along with it to have satisfactory results. For some people it is all they need to control their restless leg symptoms.

The most common side effects are constipation and nausea. It is not known whether there are drug drug interactions as it hasn't been tested. It doesn't seem to conflict with common medications or those used to treat RLS. If you will search this bulletin board you will find many references to kratom.

It appears slightly addictive in high doses for recreational users. As far as I know there haven't been any addiction problems in the doses used to treat restless leg syndrome.
Blessings,
Holland

badnights
Moderator
Posts: 4841
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Just joined

Postby badnights » Sat Feb 03, 2018 9:08 pm

@2restless
Dr B is fully aware of uagmentation and how it can disrupt the dopamine receptors and casue worsening of symptoms. In the statement you quote, he is just warning that disease progression also occurs. The level of severity your husband is experiencing, though, can only be caused by augmentation. (Odd to think that the medication makes the disease worse than it could ever get on its own, isn't it.)

The big difference between Dr B and Johns Hopkins is that at JH they don't prescribe opioids to get a person through the DA withdrawal. They have a theory that opioids will prevent the receptors from "re-setting" properly. They may be right, but dear God. What torture. It would seem to be more humane to provide the opioids, then once the symptoms have stabilized, then withdraw the opioids and let everything re-set. The torture - - -

What I'm saying is that Horizant by itself may not have much effect on symptoms due to withdrawal after augmentation. Later, when the torture is over, Horizant might be effective (or might not).

Kratom might be a good answer, but if you're following the JH protocol and trying to work with those doctors, it might not be a good idea to damage the partnership by having him use kratom. They have indicated that if need be they will prescribe opioids, so .....
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

badnights
Moderator
Posts: 4841
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Just joined

Postby badnights » Sat Feb 03, 2018 9:56 pm

@Edith
It would be helpful to know exactly what you're taking now, as Holland mentioned.

To get some brochures to give to your doctor:
1. Go to the RLS Foundation website, click Member Portal at the top, click Publications in the drop-down list, and scroll down to Advanced Information. Download "What is Augmentation?"
2. Become a member (see below*), log in, click Member Portal at the top, click Publications in the drop-down list, and and scroll down to Advanced Information. Download "Augmentation: A quick Guide" and "Augmentation FAQ"
3. For real ammunition, scroll farther to Information for Healthcare Providers and download the 2017 RLS Medical Bulletin.

All of these downloads are PDF files. If you have access to a printer, it would be ideal if you printed them to give to your doctor. You should read them yourself first, and highlight the parts that you feel are relevant to you, that you want your doctor to read. If you're in email touch with him/her, though, you can try emailing them instead, but you should still have a copy for yourself with the important parts marked so you can ask his opinion on these parts when you see him next.

To get more information, you can click on the link below my name (below this post, or any of my posts). That link opens a page that has more links to information on augmentation.

*If you are not a member, go to http://www.rls.org/ and click Join or Renew - the red box at top right.
If you are broke and the small membership fee, which goes to support research as well as creation of these documents, is too much, you can email the Foundation about getting a scholarship (free) membership: info@rls.org or (507) 287-6465. It's worth it, to access these and other Foundation publications.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

april34
Posts: 23
Joined: Fri Feb 02, 2018 3:36 am
Location: Ontario, Canada

Re: Just joined

Postby april34 » Sun Feb 04, 2018 8:59 pm

badnights Last night was a very bad night. I take 1 Pramapexole around midnight when rls kicks in and I am able to settle down in an hour or so and fall asleep. My husband tells me that the restlessness is still apparent even though I am sleeping.
However, last night when I went to bed around 10:30 pm leg cramping and jumping started immediately. Again I was forced to go for the one Pramapexole by 11:00 pm but the cramping and jumping didn't ease up one bit. Since it was quite painful, I took a Tylenol pill at 12:45 a.m. and 1 Gabapentin capsule a few minutes later. According to my husbsnd , I eventually settled down around 3:00 a.m.
If I have this same experience tonight, I will refrain taking the 1 Pramapexole and take a Gabapentin capsule instead. For your information I am on other Meds for blood pressure and bloodthinner and angina. My current dose of Gabapentin is 3 capsules at 8:00 p.m.

Edith

Rustsmith
Moderator
Posts: 3113
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Just joined

Postby Rustsmith » Sun Feb 04, 2018 9:34 pm

Edith, when I have a bad night like you did last night, I supplement my medications with a hot bath. It only requires enough water to cover my legs, but the trick is that the water needs to be as hot as I can stand it (which is very hot). When I do this, I can feel my legs relax almost immediately and the restlessness usually leaves them after soaking for just a few minutes. The effect is only good for about a half hour, but that is usually enough to allow me to fall asleep. On really bad nights, I will wake up about an hour later and have to repeat it.

I will also mention that others here use cold water rather than hot. Either way, the trick is to overwhelm the nervous system in your legs with thermal sensations that provide relief from something other than moving around.
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.

Polar Bear
Moderator
Posts: 7131
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Just joined

Postby Polar Bear » Mon Feb 05, 2018 12:40 am

I do what Rustsmith does with the water only I'm one of those who uses cold water, as cold as you can get it. It takes a couple of minutes to start taking effect and it's usually about 15 minutes to get enough relief to try going back to bed.

I would mention that the DAs, i.e. pramipexole and ropinerole usually take about 60 minutes to kick in so to get full benefit they need to be taken at least an hour before bed. Also, they work much better if you are ahead of your symptoms. If you wait until your symptoms start the medication has to work much harder and is not so effective.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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