going "cold turkey"

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

Re: going "cold turkey"

Post by retiredfg5 »

Thanks for the reply. First off you asked if I was going to try the gabapentin encarbil during the weaning from pramipexole. I will check with my pharmacy to see what the price is since my insurance won't pay. Since the price on the mirapex ER was in the $thousands, I expect I will find out the cost of the gabapentin encarbil is also too steep.
So far there is no plan to add another med while I am withdrawing. Do you have any suggestions?
I am already taking gabapentin, 300 mg 3 times daily. It doesn't have any affect on my rls.
I am working on reading the book Clinical Management ...., but I have excessive daytime sleepiness so bad it's kind of hard to read anything when I
usually drop the book after a couple of pages. It's so bad that when I am playing a game on my I-pad, I drop the I-pad while playing.
Since I have to have labs done regularly for the gastrectomy, I know that my ferritin and iron panel levels are normal, so that approach probably
won't make a difference.
Point of interest: a couple of months back, when I first started on my journey to get my rls under control, I posted on Facebook my story about my
medication not working any more. It was really interesting to me how many of my Facebook Friends also had rls or knew someone with it. Rls
is definitely a syndrome that people who have it just don't talk about it.

Rustsmith
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Re: going "cold turkey"

Post by Rustsmith »

If you are already taking 3x300mg gabapentin and it isn't helping with your RLS, there is a good chance that gabapentin enacarbil isn't going to be much better. Gabapentin enacarbil is adsorbed more consistently, but turns into gabapentin once in the bloodstream and both of these meds only help about 65% of us.

During the pramipexole withdrawal period, the only thing that is strong enough to cover the withdrawal symptoms are the opioids. A low dose is all that is required and you would only need it for five to seven days. After that, you sleep and RLS will not be great, but it is better than zero sleep and the worst RLS of your life with only gabapentin or nothing at all.
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.

badnights
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Re: going "cold turkey"

Post by badnights »

I know that my ferritin and iron panel levels are normal, so that approach probably
won't make a difference.
You need the actual number for the ferritin. And any RLS/WED specialist will want to see the actual numbers for serum iron, TIBC, and % saturation. But at least the ferritin, the reason being that most labs mark anything over 20 as normal, yet RLS/WED patients need to have ferritin levels of at least 75, preferably 100. Anything under 75 should be called low for someone with WED/RLS.

Raising that ferritin number can make withdrawal slightly easier, and you will want every little bit of help you can get.

Raising that ferritin number also is quite likely to make your post-withdrawal life easier. Symptoms are worse when our brain iron is low. Among all the iron-related assays done on a blood sample, the only one that says anything about brain iron levels is ferritin: if ferritin is low, that means you have an iron deficiency somewhere in your body. And since you have WED/RLS, it's probably in your brain. If ferritin is high - over 100 - then unfortunately that doesn't mean anything, because there are a number of reasons it can get high. So if it's high, you don't know any more than you did before. But if it's low - under 75 - then you have a problem somewhere.
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 »

Just a quick question/comment or two. I checked on my ferritin and iron levels. In September the ferritin was 171 (normal range of 8-252) and iron was 153 (n9rmal range of 50-170). So from what you say, it's not bad, but not sure it's good enough. Why all this hype about gabapentin? I've been taking it for years, at least 8 years, and I take it for foot neuropathy, it obviously does nothing for my rls. I'm on my second day of decreased doses of pramipexole, I'll let you know how that goes. As for the opioids, I have taken oxycodone in the past ten years, off and on, for foot neuropathy. And in the last couple of years I have had vicodan prescribed for post-op pain. Both of these worked some of the time but for the really bad times I would double the dose. So while I have had medical problems with extreme pain and have a high threshold, it also takes more of the pain meds to handle it when it gets too bad. So how am I going to handle what's about to happen? Sorry for rambling on, I'm feeling out of sorts. I just finished a zoom meeting of my bariatric surgery support group. It left me with lots of questions, guess I'll have to make an appointment for that too.

stjohnh
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Re: going "cold turkey"

Post by stjohnh »

Your ferritin puts you out of the IV Iron infusion guidelines. This doesn't mean IV Iron wouldn't help, just that it is unlikely you can find a doc that will prescribe IV iron for fear of iron toxicity. Ferritin is a moderately good test for BLOOD iron, but a poor test for total body iron, and a worthless test for BRAIN iron. We need better tests for iron deficiency and they are coming, but likely a few years away.

I don't understand what you are asking about gabapentin.

I'm also not sure what you mean by "what's about to happen?" If you mean stopping the pramipexole, then what's about to happen is awful, but necessary. Having a opioid to take will help, but it is possible to get off pramipexole without one. No matter what, it is likely to be VERY unpleasant.
Blessings,
Holland

badnights
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Re: going "cold turkey"

Post by badnights »

retiredfg5 wrote:As for the opioids, I have taken oxycodone in the past ten years, off and on, for foot neuropathy. And in the last couple of years I have had vicodan prescribed for post-op pain. Both of these worked some of the time but for the really bad times I would double the dose. So while I have had medical problems with extreme pain and have a high threshold, it also takes more of the pain meds to handle it when it gets too bad. So how am I going to handle what's about to happen?
@Holland, I think retiredfg5 is asking how s/he can use opioids to deal with the DA withdrawal when s/he is not opioid-naive and requires ?quite a bit? to deal with post-operative pain. You might be the best person to answer that one.

@retired, I think if you're lucky enough to have a doctor who will prescribe opioids for DA withdrawal, then your doctor will prescribe an initial dose and work with you to adjust it as necessary.

You actually don't know if the gabapentin you take regularly for neuropathic pain is helping your RLS/WED. You won't know unless you stop it and your RLS/WED gets worse.

Re gabapentin, I think you mean gabapentin encarbil, and the deal there is that since it's one of the few medications approved for WED/RLS and the others are all dopamine agonists, it's the go-to for most doctors dealing with a patient who has augmented on a DA. Unfortunately, it's usually ineffective for anyone who has augmented. It can be effective in combination with another type of medication - an opioid or another DA.

Re ferritin - @Holland -my understanding it that low ferritin in the blood usually means that there is an iron storage problem somewhere in the body. Agreed, we don't know where it is, but it is not necessarily in the blood.
And agreed, ferritin does not tell us anything about brian iron; how I should have put it is: if brain iron is low, the only serum assay that might reveal the fact is the ferritin assay.
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 »

Thanks for addressing my questions. I am one week into a1/4 dose less of my pramipexole (.75 daily instead of 1.0 daily.). So far so good. My doctor wants me to stay on this dosage for one month, then decrease it by .25 for the next month.
About the gabapentin, I'm pretty sure that it does nothing about my rls although it does help my foot neuropathy. I say this because back when I was passing out, and before it was shown to be my cardiac meds, my primary doctor had me stop the gabapentin. That resulted in worsened neuropathy but no difference in the rls.
I don't know if I will need an opioid yet. I do remember hearing my neurologist tell me that she would have to refer me to the pain clinic if that is the route I take.
I was just looking over some messages I had from friends when I mentioned my problem with rls. One of them, a nurse practitioner, mentioned taking magnesium oxide. Have you heard of this?
And finally, I had some free time Friday, I was having an infusion of reclast for osteoporosis, so I got through a few more chapters of the Clinical Management book. It has made me decide to stop taking melatonin to help me sleep since an increase of melatonin also increases rls symptoms. Then there was the list of Disorders of Leg Discomfort - I have 3 of the 5 - rheumatoid arthritis, fibromyalgia and diabetic neuropathy.
May this year be so much better than last year!

Rustsmith
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Re: going "cold turkey"

Post by Rustsmith »

Although some people report that taking a magnesium supplement has helped their RLS, they are very limited in number and my impression is that many of them have mild RLS that is highly susceptible to the placebo effect. When the experts are asked this question during webinars or patient symposia, the answer is almost always that studies have been done and none have found any benefit to supplemental magnesium. I suppose that if you have a magnesium deficiency that taking it would help, but that would probably address cramping and not RLS.

What magnesium can do is help with the constipation that usually comes with taking opioids, but that isn't relevant to you just yet. Finally, magnesium and calcium can compete with iron for adsorption in the intestinal tract. When this happens, iron will lose out. If you are already low on iron, this might make things worse rather than better.
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.

badnights
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Re: going "cold turkey"

Post by badnights »

It has made me decide to stop taking melatonin to help me sleep since an increase of melatonin also increases rls symptoms.
Stick with the melatonin if it's helping you. Both melatonin production and WED/RLS symptoms vary with the time of day; that doesn't mean one causes the other. Even though I knew this, I avoided melatonin for years just in case one did cause the other. I finally tried melatonin a few months ago, and it was the first time I felt a natural sleepiness at night since I started taking opioids 10 years ago. I've stopped taking zopiclone and modafinil since starting melatonin and light therapy. The information you read is not an indication to stop melatonin, so keep using it if it's helping you. It's certainly better than a sleeping pill! (But remember to take it at the same time every night.)

Re magnesium, what Steve said is what I would have said. Except I'll add this, too: most North Americans are deficient in Mg, and some doctors think the recommended minimum serum Mg is too low. So it might be a good thing to take Mg supplements, though it is unlikely to have an effect on your WED/RLS. Take it at a different time of day than iron, if you take iron supplements.

I did talk with someone who used Mg to treat his WED/RLS, and from his description he certainly seemed to have WED/RLS and not cramps or something else; so who knows. Maybe, as viewsaskew often says, in susceptible people any deficiency can lead to WED/RLS symptoms; and correcting that deficiency will then correct the WED/RLS. For most of us, it's not that simple; or we just haven't found out yet what we're deficient in!
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 »

well I'm into the "cold turkey" project of going off pramipexole. So far, not so good, as I was told it would be. For the last week I have been taking half of my usual dose. .25 mg at 2 pm and .25 at 9 pm. My doctor has me doing the dose decrease at one month intervals. So 3 more weeks at this dose, then one month of .25 mg once a day, and then nothing by April 11.
I find myself standing at my kitchen counter to do crafts and reading books. Sitting does not last long. But I have foot and leg problems for the last several years and standing is not a great alternative. I am coping by just standing up.
I have had to change when I use my alternating compression leggings to very early morning. Because this is when I am least bothered with restless legs. It takes too long to get out of the compression leggings if I suddenly start to twitch.
I think I am going to take your advice about the meds being available. I have found myself thinking about taking an extra pramipexole. So I am going to fill my weekly pill containers and send the pram. along with my friend to her house.
Now on a more positive note - the weighted blanket is making a difference in my sleeping. I am so glad I got it, have had it for about 5-6 weeks. I used to sleep about 2 hours a night and wake up wide awake, get u-p, watch tv, and start my very long day. Now, I may wake up at 2 hours, but I usually turn on the light, take a drink of water, listen to a little You Tube, and then lie back down for another 5-6 hours. I'm often not getting up til 7 or 8am. And I am now having dreams, something I haven't done for years. This means I am now getting all the way into REM sleep.
I hope you are all doing well, staying safe and wearing masks. I get my second Covid shot this Saturday.

badnights
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Re: going "cold turkey"

Post by badnights »

well I'm into the "cold turkey" project of going off pramipexole. So far, not so good, as I was told it would be. For the last week I have been taking half of my usual dose. .25 mg at 2 pm and .25 at 9 pm. My doctor has me doing the dose decrease at one month intervals. So 3 more weeks at this dose, then one month of .25 mg once a day, and then nothing by April 11.
Cold turkey is when you quit all at once, so you're doing a taper, not cold turkey. Some people prefer to try the taper, others prefer to get all the grief over with in a shorter time by going cold turkey (but the grief is more intense); some aren't offerred the choice. Whatever way you do it, you will end up in the same place - free of the dopaminergic medication that was making your WED/RLS worse.
I find myself standing at my kitchen counter to do crafts and reading books. Sitting does not last long. But I have foot and leg problems for the last several years and standing is not a great alternative. I am coping by just standing up.
I well remember this grief. I stood up to read and eat for years. I think that is what has ruined my feet and ankles. But you can regard this as temporary, just while the withdrawal is going on.

I am super glad to hear about your improved sleep with the weighted blanket! I sleep more soundly with mine, I don't move around nearly as much.
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 »

thanks for the correction, I guess I never thought about the difference. So yes I am tapering off. I was on 1.0 mg of pramipexole daily. My doctor has me decreasing the dose by .25 mg every month. I was not given a choice. I did, at my last appointment ask about speeding up the process so I am decreasing every 3 weeks. She still does not know what she is going to switch me to. I am on .25 mg daily and will be totally off on 3/25 , which is the date of my next appointment.
But here is something interesting that just happened. I adopted a cat on Saturday! I have been without a cat for the last 4 years, and I have always had cats all my adult life. It's been fun but challenging. Last night I shut her into my bedroom with me. I slept without my weighted blanket, but with my cat. I slept for 7 hours! And my legs haven't twitched since 8:00 last night! I know I just probably just jinxed myself by saying that. It is now
2:30 PM. I don't know why, and I don't care, I'm just enjoying it.

Polar Bear
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Re: going "cold turkey"

Post by Polar Bear »

It's wonderful that you are reducing your pramipexole and yet managed to sleep for 7 hours. I'm guessing your cat was sleeping on your legs.
It was the opposite for me. When my cat slept on my legs when seated, I felt trapped and just couldn't deal with it. I reckon that's why she ended up preferring my husband :)
Well done on your pramipexole reduction. It will be interesting to hear what follow up medication your doctor suggests.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: going "cold turkey"

Post by ViewsAskew »

retiredfg5 wrote:
Wed Mar 10, 2021 8:28 pm
thanks for the correction, I guess I never thought about the difference. So yes I am tapering off. I was on 1.0 mg of pramipexole daily. My doctor has me decreasing the dose by .25 mg every month. I was not given a choice. I did, at my last appointment ask about speeding up the process so I am decreasing every 3 weeks. She still does not know what she is going to switch me to. I am on .25 mg daily and will be totally off on 3/25 , which is the date of my next appointment.
But here is something interesting that just happened. I adopted a cat on Saturday! I have been without a cat for the last 4 years, and I have always had cats all my adult life. It's been fun but challenging. Last night I shut her into my bedroom with me. I slept without my weighted blanket, but with my cat. I slept for 7 hours! And my legs haven't twitched since 8:00 last night! I know I just probably just jinxed myself by saying that. It is now
2:30 PM. I don't know why, and I don't care, I'm just enjoying it.
YAY - for both the cat being adopted and for you sleeping.
Ann - Take what you need, leave the rest

Managing Your RLS

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 »

Wow, what a rocky few days, culminating with a trip to the ER today. Before I fill you in, please let me know if I should stay where I am or post under another category. Now, here's the story. Wednesday I took my last .25 mg of pramipexole (my friend has the rest of the bottle). Also on Wednesday I had a virtual appointment with the PA in neurology who has been treating me. She said she was not comfortable prescribing clinazepam or opioids so sent me to pain management. In my clinic pain management is paired with spine care, thus I was already a patient with them. By the way, I was supposed to have my arthritic hip injected Tuesday but they wouldn't do it because I have an open sore on my foot. So Thursday I literally spent the day with my case being bounced between pain management and neurology. Finally I got a call that I had an appointment Friday with a MD neurologist. I had actually seen him 5-6 years ago with a mirapex related problem. I trusted and admired him then and I still do after Friday.
Treatment plan: I am to try to stay off the pramipexole as long as I can stand it, at least 2 weeks. By then my body will have "reset" itself and I start with .25 mg at bedtime of pramipexole. You read that right, back on pramipexole. And only increase it slowly if I feel I need more. And the PA had me increase the gabapentin from 300 to 600 mg 3 times a day. Dr. asked me if it helped and I told him not really. So he told me to go back down to 300 mg. Of course there was very little sleep Thursday night and no sleep last night, Friday.
This brings me to my trip, literally, to the ER. I was stupid. No sleep, legs and arms twitching constantly, hip in so much pain I couldn't lie down, and the knee wasn't much better. So I had some muscle relaxer, baclofan, lying around so I took 2 (20 mg total) about 7am. About 9am I found myself on the living room floor dripping blood from my face. I struggled up, grabbed some kleenex for my face and made it into the bathroom. The left side of my face was bruised up with a skin tear on the cheek. I stood there trying to decide what to do, then called my friend and asked her if she was busy. I'm real subtle sometimes. My bad hip really hurt, and several other joints. Anyway, common sense finally arrived in my old age (I've been known to drive myself to the hospital with appendicitis and pancreatitis). After blood work, x-rays, and CT scans, they put some steri-strips on my cheek and sent me home. Of course my legs are still twitching, my hip and knee hurt more and I really would like to sleep.
I hope to continue sharing my journey with you. Good night, I hope.

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