What To Do?

Use this forum to discuss any issues associated with Augmentation
timphillips
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Re: What To Do?

Postby timphillips » Mon Jul 24, 2017 5:27 pm

UPDATE: Since many of you responded with comments and advice, I thought I would post an update to my situation. Based on what I heard it became apparent I needed to do the following: 1) find a new doc and 2) get off the Pramipexole.
The first objective seems easy but its not. Where I live, if a Neurologist is accepting new patients they are booked out 2-3 months. Without an appointment you can't find out what their thoughts are regarding medications, augmentation, etc. This is very frustrating. I can't think of any other professions that is like this.
I am an avid mountain bike racer and had a big race scheduled for mid-July so I decided to put the whole agenda on-hold. I did have an appointment with my doc in early July. I mentioned I wanted to do the Drug Holiday in the first part of August. His comments were basically this: 1) he thought I was crazy 2) I have the disease its not going to just go away. I mentioned that research has shown that 20% of those who do the Drug Holiday end up symptom free and that although only a 20% chance I liked those odds. When I mentioned how my symptoms are much worse than they used to be, he commented that was the natural progression of the disease. He commented that the whole "Augmentation theory" was created because for by researched to publish papers about.
Anyway, immediately following to race, made contact with a local RLS patient in hopes of getting a local doc recommendation. What I found out was that this person did the Drug Holiday 5 years previous (2012) and has been essentially symptom free since. This person also had been seeing my same doc, experienced the same dissatisfaction and was not supported my the doc for the Drug Holiday. She mentioned she had a friend also with RLS that did the Drug Holiday with the same results. I immediately accelerated my plans to start the Drug Holiday on Friday July 21st.
DRUG HOLIDAY
I am now 3 days into this journey. Day 1 - Friday night, no sleep. Saturday I was tired but didn't feel too bad. The RLS symptoms weren't horrible but I was also on my feet most of the day. If I tried to lay the RLS symptoms would kick in immediately. Saturday night I took 10 mg of oxycodone and was able to sleep for an hour. At 1 am the RLS symptoms were severe. Sunday during the day was rough. RLS symptoms were almost constant. I was very tired and every time I tried to rest on the couch, the RLS would kick-in to an extreme level forcing back on my feet. I did not sleep the rest of the day. Sunday night I took another 10 mg of oxycodone and was able to sleep for 2 hours, when the RLS woke me up, I moved from the bed to the couch and somehow got another 1.5 hours of sleep. At 3:30 am the RLS woke me up. At 4 am I took another 5 mg of oxy and got another 2 hours of sleep. I am at work today and no RLS symptoms. I plan to continue with the oxy perhaps switch to Norco. I have taken pain meds prior (see Mountain Bike racer above) so I know I do not react addictively. The next 5-6 days will be interesting to see how I come off both the Pramipexole and the Oxy.

ViewsAskew
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Re: What To Do?

Postby ViewsAskew » Mon Jul 24, 2017 6:50 pm

Makes me sad and angry when I hear docs who act such as yours did.

It seems to vary - somewhere between 5 and 20 days are the worst for most of us when stopping pramipexole or any DA. The Oxy should help. When you decide to come off the Oxy, you may have symptoms similar to RLS, but they are the opioid withdrawal (from dependence, not addiction) and feel slightly different - more painful for me, at any rate.

Even if this does not solve the RLS completely, it will likely reduce your symptoms - and possibly significantly. That, to me, is worth it.

Keep us informed.
Ann - Take what you need, leave the rest

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Polar Bear
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Re: What To Do?

Postby Polar Bear » Mon Jul 24, 2017 11:14 pm

I applaud you on the journey you've started. The big decision was making the decision to do so.
I look forward to your updates.
Good luck.
Betty
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Rustsmith
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Re: What To Do?

Postby Rustsmith » Tue Jul 25, 2017 1:45 am

Tim, a suggestion for you to consider in trying to locate a new doctor - When I moved to Colorado I started calling the various neurologists' offices in the town where we were moving to. I would ask the receptionist if the doctor treated many patients who had severe RLS. Of course, the receptionist had no idea, so she would forward me to the doctor's lead nurse. I found that these nurses were quite up front and honest in their replies. I asked for a general idea of the number of severe RLS patients (usually very limited) and then I would ask if the doctor was willing (or ever did) prescribe opioid medications for chronic conditions such as RLS. The answer that I always got to the second question was No, which I later found out was due to there having been a pill mill in town about a year before. So, my final question was always, do you know if there is another doctor in town who does treat severe RLS with opioids and if not, where can I go to get treatment. In almost every case the response was that she did not know of another doctor in town and that her suggestion would be to get a referral from my GP to the neurology department at the state university's medical school. That is what I did and it has worked out wonderfully.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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legsbestill
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Re: What To Do?

Postby legsbestill » Mon Jul 31, 2017 8:38 pm

Best of luck with this, Tim. You have made great progress already. It may be worth checking your serum ferritin levels -- they can have a substantial impact in optimising the outcome when coming off dopamine agonists.

badnights
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Re: What To Do?

Postby badnights » Tue Aug 01, 2017 6:19 pm

Thinking of you, timphillips
Beth - Wishing you all restful sleep tonight
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timphillips
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Re: What To Do?

Postby timphillips » Tue Aug 15, 2017 8:34 pm

UPDATE: I am posting this hoping to provide others with information about my experience in an attempt to come off 1.5 mg of a dopamine agonist (pramipexole). Below is a summary of my 21 day journey. Two months prior, I reduced to 1.0 mg of pramipexole, increased my gabapentin to 600 mg and took a daily slow release iron supplement. At the beginning of each day I took the iron supplement, melatonin, calcium/vitamin D+E, and an adult multi-vitamin. Although some may refer to this as a "drug holiday" you will see the 21 days below is anything but. Perhaps my RLS situation is worse than others but I cannot imagine doing a 10 day drug holiday without any type of medication.
Days 1-2 (first 48 hours): No sleep, stayed up all night in the garage doing a couple of projects.
Day/Night 3: I was quite miserable and needed to go to work on Monday. I took 10 mg of oxycodone that night got 5 hours sleep and felt wonderful.
Days/Nights 4 thru 21: I'm sorry to say I wish I specifically logged everything I took each day but I will summarize as this:
For 3 or 4 nights I tried nothing or only 600 - 1200 mg of gabapentin. On these nights I could not get to sleep. Although, the symptoms were more severe at the beginning of the "Drug Holiday" then at the end, the RLS symptoms in my hands, arms, legs still prevented me from falling asleep. These were some miserable days. I found some psychological low points I have never seen before.
The other 14 or so nights because I had to be at work or I was trying to establish a sleep pattern I tried 5-10 mg of hydrocodone, 5-10 mg of oxycodone, ambien, 5-10 mg of trazadone, 600-1200 mg of gabapentin, marijuana drops and combinations there of. Here are some of my conclusions of each:
What did not work:
Any amount of gabapentin alone did not work
Ambien alone did not work
Trazadone (5-10 mg) alone would make me extremely fatigued, I needed to lay down but I could not fall asleep
Marijuana alone drops under the tongue did not work
What did work:
600 mg gabapentin/5 mg hydrocodone with and without Ambien seemed to work ok. It would still take me 1-2 hours to fall asleep and got about 5-7 hours of sleep. Note: I took 5-10 mg of hydrocodone on 6 or 7 nights and only at bedtime.
10 mg of Oxycodone worked well for about 4 hours. I would fall asleep immediately. I only used this three times when I was a complete mess.
Positive Side of the Drug Holiday:
Midway though the 21 days the daytime symptoms are gone, such as when I have been at a movie or watching TV. The only problem I had was falling asleep at night. Once I fall asleep I'm good to go.
Negative Side of the Drug Holiday:
Because taking oxycodone, hydrocodone or ambien on a daily basis does not seem to be a long term solution, a couple of days ago I decided to go back to the pramipexole. I took 600 mg of gabapentin with 0.25 mg and slept solid for 8 hours. I am at 0.25 mg compared to 1.5 mg which seems to be a significant improvement. I am concerned about how quickly augmentation will reoccur and I will need to take more. I am not sure what other options I have at this point.
Plan Going Forward: Still waiting for an appointment with another doctor.
I also should note of the 21 days I found it best to sleep on the floor with a pillow and a blanket. The floor allows complete freedom to move around. I slept on the floor for some amount for all of the nights that I actually laid down to sleep.I should add I do not feel like I am at the same place I was 5 years ago before I started taking Mirapex (dopamine agonist/pramipexole). I feel as though my RLS symptoms are worse and I question if that is a result of taking the drug. Five years ago I could fall asleep just fine but would wake up in the middle of the night, every night for 1 - 2 hours. I only had symptoms in my legs. Now I have symptoms throughout my body and I can't fall sleep at bedtime.

ViewsAskew
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Re: What To Do?

Postby ViewsAskew » Tue Aug 15, 2017 9:11 pm

Thanks for sharing that. It is indeed miserable, isn't it?
Ann - Take what you need, leave the rest



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Polar Bear
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Re: What To Do?

Postby Polar Bear » Wed Aug 16, 2017 1:00 pm

Thanks for your very informative post. Details of how you progressed is of benefit to all of us.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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stjohnh
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Re: What To Do?

Postby stjohnh » Wed Aug 16, 2017 2:24 pm

timphillips, exactly what are you taking now and what symptoms do you have now? How long does it take to fall asleep? How is sleep after you fall asleep? How many hours? How much urge to move (jumpy legs) do you have?
Blessings,
Holland

timphillips
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Re: What To Do?

Postby timphillips » Wed Aug 16, 2017 8:44 pm

After deciding Sunday (August 13, 2017) night to go back to the DA (pramipexole) I took 900 mg of gabapentin and 0.25 mg of the pramipexole. I slept great that night, no symptoms at all. Monday night I tried the same but it did not go as well. I had difficulty falling asleep because of RLS symptoms.

My pramipexole prescription is for 1.5 mg per day so I have 1.0 mg tablets. Tuesday night in the process of cutting the pill with a knife to a 1/4 size it didn't break even. Since I had trouble the night before, I choose the large piece, about 1/3. Even at the 1/3 mg I had about the same experience as the night before. Last night I tried a similar tablet size (1/3 mg) and it felt as if I had taken nothing at all. I went to bed at 10 pm, moved to the floor, to the couch, stretching, yoga etc. back to the couch, then finally about 2 am, I was pissed off and took another 0.5 mg. I fell asleep within 15-20 minutes. It appears at this rate I will soon be back to the 1.0 mg in order to maintain a normal life. I will likely try 0.5 mg tonight.
I am hoping to get into a sleep center and/or the new Dr will have a better solution than 4.5 mg of pramipexole per day.

badnights
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Re: What To Do?

Postby badnights » Thu Aug 17, 2017 5:40 am

I should add I do not feel like I am at the same place I was 5 years ago before I started taking Mirapex (dopamine agonist/pramipexole). I feel as though my RLS symptoms are worse and I question if that is a result of taking the drug. Five years ago I could fall asleep just fine but would wake up in the middle of the night, every night for 1 - 2 hours. I only had symptoms in my legs. Now I have symptoms throughout my body and I can't fall sleep at bedtime.


I too, and others here, feel that our symptoms got permanently worse after augmenting on a DA. Some researchers now are saying that the body's ability to make certain dopamine receptors becomes impaired by augmentation (I am paraphrasing with a bad memory, but that should give you an idea of what they're saying).

From what you describe of Aug 13-15, you're already augmenting again. I question whether your holiday was long enough - your statement that you now have body-wide symptoms raise that question in my mind. For some people, the withdrawal takes longer - a couple of months or even more.

In any case, I think that pramipexole - and any other DA, at least for the next few years - is not an answer for you. I know how badly you want sleep, but I cringe to think of the agony you will go through when you stop the pramipexole again, so soon after going through it the first time. If you continue taking it, you could easily end up well above 4.5 mg and still be in misery. No doctor who understands the disease would let you do that.

Is there an RLS Quality Care Center you could go to? You need a doctor who has had a lot of experience in treating augmentation. It would be worth whatever you had to pay, worth the time lost at work, even worth a lost job, to get your life back. That's what you're looking at now - your life, will it have quality and be worthwhile? With proper care, you will have that again. It won't be hellish like this forever. There is a med or combination of meds that will work for you, and partnered with a good doctor, you'll find it.
Beth - Wishing you all restful sleep tonight
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EeFall
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Re: What To Do?

Postby EeFall » Fri Aug 18, 2017 11:33 am

I took Mirapex for years and it worked. Augmented and took it on and off for several more (a big mistake). When it worked it worked but when it stops working it will never be the same. I also suspect it has long lasting effects. I haven't taken it at all for about 5 years. My doc got me off the 5 drugs I was taking (dependent on all of them) and it took a solid month (of hell) to slowly stop them all. He put me on Suboxone only and I have been on it since then.

In the past few weeks I have gone from taking 4 mg a day to 1 mg (on my own to see if I could because it costs me $275 a month & also to see if my RLS had improved). Although the last two days have not worked out too well I suspect that the reason I am able to take less may have something to do with Mirapex problems wearing off after all these years. I don't regret the 6 years Mirapex worked for me but I should have quit it as soon as it no longer worked.

I don't blame the doctors involved either as they were simply trying to put out fires and find anyway to keep me functioning so I could continue to work and support my family. It is just that it is really still a mystery as to why RLS is happening to us all. The doctors did not mention augmentation either until it happened, but why would they, it would have alerted me to the possibility and I suspect many patients never have the problem ever (the lucky ones and obviously most of them have no reason to find this site).

badnights
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Re: What To Do?

Postby badnights » Sat Aug 19, 2017 5:22 pm

Not many studies have been done on long-term use of dopaminergic agents and augmentation. The ones I'm aware of were published in 2011. In one, 266 patients were referred by their doctors from across the US to answer a questionnaire. They were all on on dopaminergic therapy - ropinirole, pramipeoxle, and 8% of them were on levo-carbidopa. The study found that for any duration of treatment up to 8 years, the risk of augmentation increased by 8% per year. For people who had been on dopamine treatment for 4.5 to 6.5 yrs, only 5% showed no signs of augmentation. For those who had stayed on the treatment for over 6.5 yrs, that number was greater - 11% (possibly because not as many people could stay on it that long due to augmentation). 73% of the patients (lumping together those who had just started with those who had been on treatment for years) reported at least one sign of augmentation.

Another study found a rate of augmentation for pramipexole (after the first year) of 7% per year (so, after 10 years, 70% would have augmented - except, the rate in the first year was higher). Augmentation required discontinuation of treatment after 5 years in 42% of patients.

I just noticed in another study - timphillips, this might be relevant to you- that the average time until augmentation was resolved, for an admittedly small sample of 14 patients, was 3 months.
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

legsbestill
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Re: What To Do?

Postby legsbestill » Mon Aug 21, 2017 5:17 pm

Thank you for an informative and useful post about your experiences. I found it very interesting.

I know you did not ask for further input and am conscious that you have already received advice that will not be absolutely what you want to hear - though, in my view, extremely well-informed and prescient. I feel bound, however, to add my voice to that of badnights and others and urge you to reconsider returning to mirapexin at this stage.

As you now know, the process of withdrawing from mirapexin is a not insubstantial struggle and is likely to be worse second time around.

I came off mirapexin last year - I was on a similar dose to you - and I found that it took several months to reach my base level of symptoms. If I had returned to mirapexin after three weeks, I would have had no idea of what I actually needed. I took my last mirapexin around the end of May. Like you I found that pregabalin (in my case) was useless as a monotherapy. In August I started taking oxycontin (I was absolutely desperate by that stage as had had effectively no medication for two months with severe symptoms and virtually no sleep in that entire time). I needed 30 mg of oxycontin to deal with my symptoms initially.

I took oral iron throughout and my serum ferritin levels gradually rose. By the end of December I was able to reduce my dose of oxycontin to 5 to 10 mg daily, supplemented with 50 to 75mg pregabalin. In February I started using kratom in place of oxycontin as I developed central sleep apnea. I also started using neupro (a slow release version of ropinerole - another dopamine agonist). I now alternate my use of neupro and kratom every few weeks. I find that neupro ceases to be effective after three weeks or so and at that stage, rather than increasing the dose which would, I fear, lead to augmentation, I stop it and start kratom again.

In summary, although it took about seven months, my symptoms did eventually settle to the point where I needed between one sixth and one third of the medication I needed in the early months after withdrawing from mirapexin. In your shoes, I would use an opioid for the next few months as my main treatment before considering returning to a dopamine agonist. If I did return to a d/a I would look at a slow release version which are said to have a lower incidence of augmentation (I'm not sure I believe this but my sleep consultant is adamant). I would also try kratom if at all possible. Finally, I would get my serum ferritin levels checked and concentrate on bringing up the level unless it is particularly high already.

You might find the patients' letters page of Dr. Buchfuhrer's website rlshelp.org helpful.


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