going "cold turkey"

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retiredfg5
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Joined: Fri Nov 06, 2020 8:28 pm

going "cold turkey"

Post by retiredfg5 »

I am fairly new to the group, and would like some help/suggestions. I am finally seeing a neurologist and she seems well-versed in rls. Actually, she is a physician assistant who started out as a medical technologist, and I retired 6 years ago after 42 years as a medical technologist. So we speak the same language. Anyway I told her I am currently on pramipexole, 0.5 mg 2/daily. But I had been taking mirapex until it became unavailable, and it works. I told her if I could go back to mirapex I would be fine. She said that she would order the mirapex for me. She also warned me that by my symptoms breaking through earlier in the day it appear that pramipexole is not working. In that case I would have to go off pramipexole for 4-6 weeks and then she would put me on a different med. Now I've tried 2 different pharmacies in town and they cannot get mirapex.
So I'm stuck taking pramipexole, but it doesn't work. The PA seemed to not want to put me on a higher dose. I am trying to come to grips with the fact that I may not be taking anything for my rls for 6 weeks. If anyone has helpful hints, coping mechanisms, or someone to contact for help, please let me know. Please, please, please.
Here is where I thought I would throw in what call a "chuckle for the day". When I was first put on mirapex, about 6-7 years ago, the dose I was put on was 2 daily of 5.0 mg. Funny thing is, for the next 2 years I kept having fainting spells. They would happen at night when I was standing and I would come to just before I hit the floor. It happened 3-4 nights a week, sometimes 2-3 times a night. I broke a few bones, toes and fingers, and once a subdural hemorrhage. Eventually I saw a neurologist, M.D. who spotted the problem and decreased the mirapex dose from 5.0 gm to 0.5 gm. I stopped fainting and breaking bones.

Rustsmith
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Re: going "cold turkey"

Post by Rustsmith »

First off, pramipexole is the generic name for Mirapex, which is a trademarked name. The original manufacturer stopped making tradenamed Mirapex because the generic suppliers could undercut their price. Mirapex ER is still available, but is extremely expensive and almost never used for RLS.

The current guidelines from the experts for the maximum dose of pramipexole is 0.5,g/day, so you are currently at double that dose.

One of the "side effects" of pramipexole and all other dopamine agonists (ropinerole and rotigatine, aka Requip and Neupro) that is specific to RLS is the condition of augmentation. Augmentation occurs when the med stops helping and starts making your RLS worse. Increasing the dose makes the med work again, for a while and then you augment on the higher dose. We have a forum that is specifically dedicated to augmentation that will tell you more.

There are two ways to get off of pramipexole. The first is what your PA described, which would involve reducing your dose from 1mg/day to 0.25mg or 0.5mg/day for a little while and then going down to zero. During the taper, your RLS will get worse. When you stop, you will experience the worst RLS of your life for 5 to 7 days. You will probably get absolutely no sleep during that time. We usually suggest that you have a family member hide your pills because around day 4 you will begin to get desperate. Then at around 7 days, you will start to get a little bit of sleep each night and the RLS symptoms will start to decline. It can take up to 30 days to return to whatever is your current untreated normal RLS.

The other approach is to start with a low dose opioid to help cover the symptoms of pramipexole withdrawal. You can stay on the opioid for about a week after stopping the pramipexole and then stop the opioid. I can assure you that withdrawal from an opioid after a week is a piece of cake compared to pramipexole withdrawal.

My suggestion for deciding which approach to take is to think about what you think that you will need to do to manage your RLS once you are off of the pramipexole. Those of us with severe untreated RLS can only treat our symptoms with an opioid. If you think that that this will be the case for you, then the misery of the "cold turkey" approach doesn't make much sense since you will be taking an opioid anyway. But if your symptoms are rather mild and you think that you could manage with just iron therapy and/or the use of gabapentin, Horizant or Lyrica, then it is a toss up.

Finally, once you have augmented on a dopamine agonist, you do not want to start any of them again, unless it is part of a multi-drug cocktail for very severe RLS. Once you have augmented on one DA, you will very quickly augment again on any of them.
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.

retiredfg5
Posts: 16
Joined: Fri Nov 06, 2020 8:28 pm

Re: going "cold turkey"

Post by retiredfg5 »

Update to going cold turkey. I have contacted my neurologist P.A. about my latest findings about mirapex. Basically, the pharmacies say they can get mirapex ER but not plain mirapex. She has ordered mirapex ER .75 mg daily for me. She also asked me to send her this discussion board conversation which I had mentioned to her.
I did find your answer very helpful. I do have a couple of questions/comments. Can you give me an idea of what you consider a very bad case of restless leg as opposed to mild or moderate? What is the usual method of switching from pramipexole to miapex ER? The other meds I have tried are requip - didn't work, neupro - bad reaction, I already take gabapentin. I am also diabetic, CHF, pulmonary hypertension, sleep apnea. A year ago I had bariatric surgery with a sleeve gastrectomy, So for me metabolism of medications is sometimes different. The surgery has improved my health quite a bit, including not needing insulin since the surgery and loss of 100 pounds. I am facing a couple of major surgeries next year and I don't want to be twitching or begging the nurses for my medication (which I have had to do in the past).
Thank you in advance for all your helpful information .

Rustsmith
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Re: going "cold turkey"

Post by Rustsmith »

First off, expect a great deal of pushback from your insurance company about the use of Mirapex ER. The uninsured price of a 90-day supply of 0.375mg tablets (smallest made) is between $15K and $20K. Obviously that is huge when compared to the price of generic pramipexole.

As for how to make the switch, I honestly can say that I have never heard of anyone who made the change. The price tag of Mirapex ER always gets in the way.

As for how to determine RLS severity, the International RLS Study Group designed a series of 10 questions that are each scored from 0 to 4. The sum of the responses is your score. A score of 11 to 20 is considered moderate, 21 to 30 is severe and 31 to 40 is very severe. You can find a copy of this on a number of websites. This link is to one hosted by Arbor Pharmaceuticals (makers of Horizant), but the same thing appears on a number of other websites and this is not an endorsement of Arbor or their products: https://www.restlesslegs.com/pdfs/Restl ... -Scale.pdf

A suggestion that I highly recommend is to order a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed. by Lee, Buchfuhrer, Allen and Hening. You can usually get it from Amazon for about $35. It was written as a guide for doctors, but is something that you can understand. It discusses the pros and cons of all sorts of meds (including the ones that make RLS worse). I know of some people who even bought two copies and gave one to their doctor. Others simply mark specific passages and then take it with them to share with their doctor.

With a couple of major surgeries on the horizon, you might want to give very serious thought to switching to an opioid now, rather than later. It doesn't matter which one, because they all work equally well for RLS (apparently the same is not true when it comes to pain). The only differences between them when it comes to RLS are that their side effects vary and the convenience of the longer acting opioids (methadone and tramadol ER) at one/day versus the others, which are two to four times/day. You mentioned that you have sleep apnea, but that problem with opioids can be handled by habitual use of your CPAP machine. I also have a form of sleep apnea and every time I see my doctor I can count on being asked to reaffirm that I am using my machine every night (or else she want to see my machine's data).
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
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Re: going "cold turkey"

Post by stjohnh »

Steve sounds about right to me, switching to opioids now will make your upcoming surgeries much easier to deal with. Hospital nurses are far more likely to continue opioids for a patient who had been on them regularly. Persuading a nurse to give you opioids in your preop NPO phase because "I have restless legs" would likely be very difficult.

I think you are probably augmenting now, though you haven't said much about your actual symptoms. Being on mirapex at 1mg per day will almost certainly cause augmentation more quickly than at lower doses. When you say pramipexole doesn't work, that may be because of augmentation rather than some difference between brand name Mirapex and generic pramipexole. They should work the same, they are the same chemical. Augmentation can look like "the drug doesn't work."
Blessings,
Holland

badnights
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Re: going "cold turkey"

Post by badnights »

Holland has said it already, but I'll say it too. Switching from pramipexole (which is the same medication as Mirapex) to Mirapex ER is not going to help your situation. You are probably augmented, since augmentation is the main cause of increasing doses of dopamine agonists (DAs).

Natural progression of WED/RLS is much slower than the medication-induced progression called augmentation. Augmentation is more likely for a person the higher the dose of DA they're on, the longer the time they've been on the DA, and the lower their serum ferritin. You haven't mentioned your ferritin concentration, if you've had it done, but your dose has been high for a long time, so you've probably augmented. Mirapex ER is just a long-acting version of Mirapex/pramipexole; it might mask the augmentation for a while, but you will soon enough be back in the same situation - the vicious cycle of raising a dose to get rid of augmented symptoms, which causes worse augmentation, which leads to a raised dose, etc.

The solution is actually to stop the DA, not to raise the dose.
Holland wrote:Persuading a nurse to give you opioids in your preop NPO phase because "I have restless legs" would likely be very difficult.
Nurses, and doctors, have a very poor understanding of what WED/RLS is, and calling it "restless legs" instead of "restless legs syndrome" exacerbates the problem. Even "restless legs syndrome" is ridiculous as a description of the disease, a very unfortunate name, like calling Parkinson's "shaking head syndrome" (to borrow an analogy from someone more imaginitive than me). That's why I like the newer name, Willis-Ekbom Disease.

I warned the anesthesiologist at one of my surgeries about WED/RLS and he took it seriously, but did not pass the information to the nurses, and I heard the nurses in recovery laughing about the possibiltiy that my legs would move after a spinal anesthetic. But such movements have been documented.

The Foundation has a couple of brochures that can be used as checklists and information packages for doctors and nurses invovled in your surgeries. I have printed copies of these in triplicate. One goes to the surgeon, one (the most important) to the anesthesiologist, and the other to the head nurse. See the link in my signature for how to access RLS Fountation publications.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

retiredfg5
Posts: 16
Joined: Fri Nov 06, 2020 8:28 pm

Re: going "cold turkey"

Post by retiredfg5 »

Thank you all for your valuable input. By the way badnights, you sure sit at your computer at odd hours, 1:27 am. Sounds like me. To fill in the blanks : sleep apnea - I have been on CPAP since 2002, when my rls was also diagnosed. Unfortunately I usually only sleep 2-3 hours with it on and then wake up for the rest of the night. I talked with my pulmonologist about this and he had me do a take-home sleep study, waiting for results. It could be that with my weight loss I may not need the CPAP, it happens. I can't get away with how much I do or do not use my machine because my model automatically sends the data right to the doctor's office. Ferritin - because of my bariatric surgery I have my ferritin, iron panel and about 14 other labs checked every 3-6 months. The ferritin and iron have always been high enough (don't remember the exact numbers). Symptoms - at my current dosage of pramipexole, I get restless legs every day about 11 am and again about 7 pm. Coincidentally I take my pramipexole at noon and 8 pm. My symptoms occur when I am sitting in my recliner for a while, all of a sudden my legs feel a if they can not hold still. I have to move them. It's like a strong compulsion. I have to force myself to stand up and walk up and down the hallway for a while. It then goes away for the time being. Mirapex - The reason I am trying to get mirapex goes back to the early 2000's when I first was treated for it. I tried several meds, requip, neupro, pramipexole, and then mirapex. The first 3 did not help but mirapex did stop the restless legs. I know it doesn't make sense, and maybe it is not true any more but at the time only mirapex worked. Of course there is my history of fainting frequently at night, 3-4 nights a week, 1-3 times a night. This continues a couple of years until a neurologist notices that I was taking 5.0 mg of mirapex as well as a very high dose of gabapentin. He lowered the dosage of these two and I stopped fainting. (See my chuckle of the day in my first post). I plan on taking the questionnaire for severity, ordering the book, and emailing my neurologist about this latest information you have all so helpfully supplied. If she wants me to I will send her a copy as I did your first reply Rustsmith. Again, thank you all, I had so many questions and most of them have been answered.

retiredfg5
Posts: 16
Joined: Fri Nov 06, 2020 8:28 pm

Re: going "cold turkey"

Post by retiredfg5 »

Update 12/9 - I got a response from my insurance company, they will not cover the mirapex ER. I certainly can't afford it, so when I have my next appointment with neurology in mid January we will have to discuss going off pramipexole. Until then I will continue to take 0.5 mg of pramipexole twice daily. This doesn't cover the twitching completely so I force myself to get out of the chair and walk it off. I still have not heard the results of my home sleep study, it may be another 2 weeks. I got the book "Clinical Management of Restless Leg Syndrome" and started to go through it. I took the quiz to measure the severity of your condition. I did it twice and both times it was in the very severe category. And finally, I bought a weighted blanket today. I'm hoping it will help my sleep.

stjohnh
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Re: going "cold turkey"

Post by stjohnh »

Augmentation results in symptoms of "very severe" RLS.
Blessings,
Holland

badnights
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Re: going "cold turkey"

Post by badnights »

Until then I will continue to take 0.5 mg of pramipexole twice daily. This doesn't cover the twitching completely so I force myself to get out of the chair and walk it off.
It's best anyway that you don't cover it off completely. When the symptoms are 100% covered, they respond by getting worse; then your meds aren't enough anymore, and you're right back where things are not-quite under control. That's the best place to stay, so as to avoid the need to increase medication doses.

I like my weighted blanket. But I don't think I would like it if I was actually having symptoms.

I am not surprised you're severe; as Holland said, you're augmenting (symptoms starting at 11 AM). You should be aware that withdrawal from the med you're on involves yet more worsening of the symptoms. Temporarily. You need to be psychologically prepared to endure that in order to get off those meds and let your disease improve to something you can live with. Keep that goal in mind. You need to stop this med to relieve your symptoms.

You were on 5 mg pramipexole (brand name Mirapex). No wonder it worked when nothing else had; the dose was way too high but it sure stopped the symptoms. Unfortunately, it also hastened augmentation. When you tried it before, as a generic called by its drug name, pramipexole, the dose must have been much lower, which is why it didn't work then. It was not the difference between pramipexole and the version of pramipexole that has the brand name Mirapex; it was the difference in dose.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

retiredfg5
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Joined: Fri Nov 06, 2020 8:28 pm

Re: going "cold turkey"

Post by retiredfg5 »

I just had my appointment by phone with my neurologist. We decided to try using gabapentin encarabil instead of plain gabapentin. Then early next year we will work on going off of the pramipexole. I'm trying some non-medication options. I got the weighted blanket, plan on walking daily for 20 minutes or so, will use a bicycle pedaling gadget, and am using my sequential circulator. Hopefully all of this together with the med change will make my life a little better. Happy Holidays to all, and I'm glad I found you.

Polar Bear
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Re: going "cold turkey"

Post by Polar Bear »

I do hope that this works for you, that putting these efforts into place will bring some benefits.
We are indeed glad that you found us..... just sorry that you needed to. :P
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

badnights
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Re: going "cold turkey"

Post by badnights »

Happy Holidays to you too. The sequential circulation device can be very helpful. Good luck.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

retiredfg5
Posts: 16
Joined: Fri Nov 06, 2020 8:28 pm

Re: going "cold turkey"

Post by retiredfg5 »

Update on going cold turkey: I am. Going cold turkey. Starting in two weeks. I had a phone appointment with my neurologist last Thursday and we discussed what to do. She appreciates the information I am getting from you and is very willing to listen. We decided, after I told her my pulmonologist was going to start me on gabapentin encarabil so that's what she ordered. Guess what? My insurance won't pay for that either (wouldn't pay for mirapex ER). So, after much thought and feeling I was going to the dentist to have 6 root canals done, I contacted my neurologist and said I was ready to wean myself off of pramipexole. So starting January 11 (arbitrary date because I have a hip injection on the 7th) I decrease my total daily dose by .25 mg daily for a month, then decrease another .25. This puts me totally cold turkey April 12. Other news: I finally got the results of the at home sleep study I did in November. Mild sleep apnea, recommend to continue using CPAP. Oxygen saturation as low as 85%, apnea episodes 9.4 per hour, and excess daytime sleepiness score of 20 of 24 for severe sleepiness. I also have been experiencing restlessness in my right arm occasionally, which I had forgotten about until I was reading the Clinical Management book. I'll keep you posted. Here's hoping 2021 is a whole lot better than 2020.

badnights
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Re: going "cold turkey"

Post by badnights »

Yup, in the arms is almost always due to augmentation. It took some time before doctors, researchers, even patients realized that WED/RLS is rarely severe enough to occur in the arms unless it's been helped along by a medication that was intended to stop symptoms.

I'm glad you have a plan to reduce and remove. Are you able to get the gabapentin encarbil even tho insurance won't pay? Are you intending to being using it during withdrawal? You should have something to help out a bit... I don't think Horizant will help much, but it might be better than nothing.

I read my Clinical Management book cover to cover when I first got it :)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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