I have just changed my medication from Gabapentin to Pramipexole has anyone had experience of using Pramipexole for bad RLS.
Pramipexole : I have just changed my... - Restless Legs Syn...
Pramipexole
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Mike-tyson
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That is a big mistake. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
Also do a search at the top of this page on augmentation and read the horror stories.
Besides you tried pramipexole before and had bad side effects.
Why do you want to switch from gabapentin?
hi Sue. I tried Pramipexole 3 years ago but did not give it time. I have had Pramipexole recommended by my doctor as they reduced my Gabapentin to 300mg per day which did not stop my RLS And my doctor was not happy to give me higher dose. I have been taking 2 x 300mg. Of Gabapentin per day for few weeks so running out 300mg tablet. And I knew Doctor would not give me more to get through the month. So decided to try the Pramipexole which to be honest I had forgot I had tried it briefly in 2020. Thanks for your advice
Regards
Mike
600 mg is a very low dose so it is no wonder it is not working. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before as it interfere with the absorption of them. If your doctor won't increase it by more then copy the appropriate section of the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
Oh my. Thank you for posting this link. I have found other guides and studies, but nothing like this. I am sending this to my primary care physician immediately.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
SueJohnson has given you excellent advice.What dose of gabapentin were you on and how did you take it? At night only in split 600mg doses?
Why did your doctor put you on Pramipexole? Did he explain in detail about the very high risk of it making your RLS much, much worse?
Many on this site have been on Pramipexole. It is a miracle at first and then it turns on you and you have to get off it. The withdrawal is brutal.
Your GP should NOT have prescribed it without first checking your serum ferritin and all meds you're taking.
I suggest you read the Mayo algorithm and RLS-UK website. Learn everything you can because RLS is not taught during medical training in the UK.
My neurologist switched me from gabapetin to pramipexole about a year ago. I can't speak to other people's experiences, but it's been working well for me. (Came off gabapentin for valid reasons I won't go into here.)
That's great that it is working for you, but just be aware of the signs of augmentation: The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. If that occurs check back on this forum for what to do.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. And if ferritin is below 100, one is more likely to suffer from augmentation per the RLS foundation publication on augmentation.
Thank you for the suggestions. I'll be having some lab tests soon, and I'll ask them to include ferritin and trasferritin saturation.
Please, please, please go to your practitioner and get them to prescribe something else. I thought Pramipexole was a miracle drug until I quickly went from one to six Pram per day and then started augmentation on the highest dose allowed ie, it stops working and actually makes RLS worse. I am just coming to the end of months of hell weaning myself off Pram to go onto Pregabelin. I can’t wait to be rid of the Pram. That’s my 2p worth anyway. Sorry.
i know how you feel it was the same for me it was so good at first now my life is hell i have been trying for months but i will succeed i will xgood luck to all you sufferers
I have been on pramipexole for over 10 years now. I have augmentation (worsening of RLS and requiring more and more Pramipexole with declining relief) and it is a nightmare. I have RLS in my whole body now pretty much all day. I started on 0.1 mg of Pramipexole and got up to 3 mg before I realized what was going on. I am trying to get below 1.5 mg and cannot. Besides this, most doctors don’t understand augmentation and do nothing to help me. I am probably going to have to go on an opioid to help me get off - and it still won’t be easy from what I have read. I am seeing a doctor that specializes in weaning people off drugs to see if he can help me.
If you do take it, DO NOT take more than 0.5 mg. It can be supplemented with gabapentin or pregabalin to help. I take 900 mg of gabapentin daily - I am hoping once my augmentation is solved, that can be reduced as well.
One thing that does really help me is using a foam roller and/or hammer massager on my legs before bed. It makes a huge difference.
If your doctor won’t give you more gabapentin or switch you to pregabalin or gabapentin enacarbil, find a different doctor who will.
Oh my goodness - you were on 6 times the maximum dose for RLS. Congratulations for getting down as far as you have. To further come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Also see my post above on things that help or hurt RLS and my post on ferritin. Have you had it checked? Are you taking any other medicines or OTC supplements?
Hi, I've been taking pramipexole for about 15 year's and propanalol prior to that. I have moderate rls and have found pramipexole to be a good med relief, make sure that you take it one to two hours before going to bed.
i was on Pramipexole for 26 years with every dose increased it only gave relief for short periods at a time, i was at wits end and GP useless, i was almost suicidal. I found this forum and it was a lifesaver for me. I was advised to very slowly wean off Pramipexole and nearer end starts on Pregabalin overlapping for a final 2 weeks. . Fortunately my GP went along with prescription. I took over 12 weeks to come off the Pramipexole reducing every two weeks by quarter of a tablet, funnily enough once I got down to 3 tablets it stabilised for quite a while which was amazing but rls did come back so i I persevered and slowly came off them and onto Pregabalin.
I do live in a state of anxiety worrying if GP will continue with it though.
Good luck.
You may be one of the lucky ones who does not suffer augmentation on pramipexole. But if you aren’t lucky and suffer augmentation, then your life could become hell. I know from experience.
Hi, I'm on the lowest dose pramipexole and it gives me insomnia which defeats the purpose, but I found if I take it with 300mg gabapentin it helps me sleep, I've tried the max dose of gabapentin for rls and it didn't work for me, however I've tried several times to come off the lowest dose of pramipexole I'm on and it's been hell, my symptoms come back worse than ever and 5 days of pure sleep deprivation is all I can handle. I'm on pramipexole 5 years now and I've never upped the dose but I do wish I was never given it in the first place as I think my low iron was what was wrong but even now hat I have good iron stores I can't come off the pramipexole, I'd love to know how long it takes to come off pramipexole and will I always suffer from severe rls or will it ease once I persevere with the DA withdrawal, my advice would be to steer clear of them.
hi well here i am still trying to get off pramipexole ive gotten down to half of 0.125mg but ive had the most horrendous episode since 5pm i had to take another 1/4 of a pill i cut it down to 3/4 for two weeks but have only been on half pill for two nites. the RLS is everynight all nite and starting earlier. i went to docs yesterday she wants to know why do i want to come off them and pregabelin [ lyrica ] then told me to take iron and magnesium and 2 paracetamols then come back for tests in 3 months i am so tired i wish i had never heard of this terrible to withdraw from drug. i itch ,im freezing ,im hot ,my feet are on fire i have anxiety, i panic xx
I feel for u I really do, I wish I'd never started pramipexole, I will try again but I wish doctors were more supportive, there has to be some drug out there that can help with the withdrawal effect.
You say you were on the max dose of gabapentin. What was that as 3600 is the max dose but since it needs to be taken in divided doses of no more than 600 mg separated by 2 hours, that would be ridiculous.
Hi Sue, the max dose they'll prescribe for rls in Ireland is 1200mg, that's what my GP told me and to be honest I felt a bit weird on 1200mg, he moved me up to 600mg yesterday from the 300mg and I slept better only woke twice and the rls was mostly in my arms and shoulders, I'm hoping that if I can get off the pramipexole altogether the gabapentin may be the drug that works best for me.
That's great!
Ask your doctor of 100 mg capsules. Then you can increase by that amount every couple of days. Since it is not absorbed above 600 mg, take the 600 mg 1 to 2 hours before bed and the difference 2 hours before that. 900 mg is often the amount used before you are off pramipexole. After you are off pramipexole for a few weeks and your symptoms are settled, you can try increasing it. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." although you say Ireland won't prescribe more than 1200 mg. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of them and if you take calcium don't take it within 2 hours. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed at Https://mayoclinicproceedings.org/a.... If the 1200 mg of gabapentin makes you feel weird you might want to try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.
Thanks so much for all the great advice Sue, much appreciated
It will revert to what it was before you went on pramipexole. To come off it, you need to shave just a little bit off the tablet with a razor blade and continue this same amount until the symptoms settle. Then shave a little more, etc. You probably need a low dose opioid to help you through this.
Or see tagaxel's solution below using a compounding pharmacy.
Thank you Sue, I will try again when kids are on their school hols so I can stay in bed if I have bad nights!
Good luck. We'll be rooting for you. You can do it.
As you will see from other responses pramipexole/Mirapex causes augmentation. That means not only does the drug stop working, but it makes your RLS worse. That's just the tip of the iceberg! Trying to get off pramipexole can be pure hell. I'm not going to go into detail as to the misery it caused me but suffice it to say I am now, after 18 months still micro tapering from the drug because it causes something called DAWS – dopamine agonist withdrawal syndrome. It looks like your doctor is not up on the latest treatment for RLS which is a new drug called Horizant. If you have trouble withdrawing from pramipexole let me know and I will help you with the math. I use a compounding pharmacist who takes the solid medication and renders it into a liquid so that I can reduce at incredibly small amounts.
Horizant is great but is a 24 hour equivalent of pregabalin/gabapentin and is not available in the UK and very expensive in the US. Unless one's symptoms are all day and night, one is better off with pregabalin or gabapentin.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Pramipexole works well (I take it) but as many will attest, if you take too high of a dose for a long enough period of time, you can begin to have adverse effects from the Pramipexole referred to as augmentation. You will be at significant less risk for augmentation if you keep your dosage to 0.25mg or less. Managing RLS does not need to be done with only one drug; gabapentin and Pramipexole compliment one another so IF you are taking more than 0.25mg of Pramipexole, consider talking to your doctor about reducing the Pramipexole to a safer level and make up for residual RLS with gabapentin or pregabalin (Lyrica). Also, you MUST have your iron levels check and optimized; if you have not been told to have your iron levels checked, you better see a sleep specialist to help you manage your problem. I am being very blunt but the iron thing is very basic and essential. Hope these comments help.
I wish I have never heard of Pramipexole or any DA drugs. The citizens sued the FDA (2019?) and won. The citizens sued for a reason. You won't believe the reasons...
Google "Pramipexole Lawsuits". Big Pharma deserves all the lawsuits it gets.
Like many addictive drugs, prescription or otherwise, pramapexole saved my life - and then ruined it. Withdrawal from it has been described as comparable to heroin. For me, it augmented until I couldn't sit during business meetings and physiotherapy appointments were a daytime nightmare as my legs and arms twitched and twitched the entire time I was lying down. I did not realize it at the the time, but I was in continuous daily withdrawal, and until I actively withdrew from the drug I knew no relief. Physicians either do not know or do not admit to the augmenting nature of this drug. Stop taking it as soon as you can and look to other solutions.
What antidepressant are you on? Most make RLS worse. The only safe ones are Wellbutrin or trazodone. Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
What solution have you found and does it completely control your symptoms?
As I believe that my RL are mostly related to my antidepressant (citalapram), I have studiously avoided increasing my antidepressant dose and was lucky to be able to reduce from 40 to 20 mg, supplementing with supplements such as Vitamin D. I have concentrated on managing my life so that I don't have to increase the antidepressant, and accepted that I do not have much uninterrupted sleep. I was also fortunate to be able to change my work schedule so I don't have to wake up at a certain time. I believe that any REM I get might be 2 hours. Eight years after going off the pramipexole I have found no consistency to why it happens - what I eat, what I drink, how much I exercise, cold packs, hot packs, showers, baths, magnesium citrate - other than the more tired I am the worse it is - and then there is the occasional few days when I forget that it exists!
Preparing for an overseas air flight a few years ago (even 2 hours flights were torturous) I read that visual stimulation might be the best way to distract from the RL, specifically video, not reading, so I transferred that possibility to my sleeptime and turn to streaming services any time the RL is unbearable. This seems to help me to fall asleep and for the RL to settle down to enough of a dull roar for a couple of hours. I also worked with an energy therapist who gave me a mental exercise to use.
Bottom line is that I don't think "they" know why it occurs and so recommended treatments are probably not targeting the cause.
To quote the La Leche mothers, "no one ever promised you a good night's sleep."
If you are not familiar with the Mayo Clinic Updated Algorithm on RLS which is now the bible for RLS, I suggest you check it out at at Https://mayoclinicproceedings.org/a... and refer your doctor to it as most doctors are not up to date on it. The first line treatment for RLS is now gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It takes 3 weeks to be fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them and if you take calcium don't take it within 2 hours. I take 1500 mg of gabapentin and my symptoms are completely under control.
Thanks you Sue - I will study the Mayo clinic bible 🙂. I have not had low iron identified as a general health issue. Given that a lot points to RLS being neuro related, I don't understand how any physiologic deficiency treatment can be effective but I will try to be openminded.
It is not low iron that is the problem, it is ferritin and ferritin that is normal for others is not normal for those of us with RLS. Check out sciencedirect.com/science/a...
Do consider switching your antidepressant to Wellbutrin or trazodone as they won't make your RLS worse. In fact in at least one case trazodone made it better.
I tried different antidepressants about 10 years ago to disastrous results - gained weight on cymbalta, spent 2 weeks weeping and dysfunctional while going off cymbalta (no one warns about that) then spent about 6 weeks yelling at my family while on Wellbutrin, so went back to citalapram.
Are you recommending the trazadone for depresssion or for sleeping? is it an SSRI?
It is not an SSRI as all of those can make RLS worse. It is used for depression which I is why I recommended it. It also treats anxiety and insomnia.
Thinking of going on Pramipexole for RLS? Hope you've got a good jaw, Mike! (See: augmentation)
why would I need a good jaw please explain
haha mike tyson boxer good jaw but you will need some strength to get off them if you do decide good luck xx
Hi, Mike-tyson,
Sorry for being unclear in my attempt at humor! I didn't mean your jaw specifically; that was just wordplay on your user name. I just meant that, because of the likelihood of eventually suffering augmentation from using pramipexole, you might need strength to ween off that dopamine agonist. I was just agreeing with others that RLS sufferers should think twice before using that med. Best wishes!
I have drug-induced severe PLMD but there are enough similarities in cause, treatments and symptoms that I think I can add something. Generally, I try not to look at treatments as first and second-lines, but as all being deserving of being on the RLS patient menu. They ALL have their pro’s and con’s. The MAYO Algorithm and the 2012: ”Long-term treatment of restless legs syndrome/Willis–Ekbom disease: evidence-based guidelines and clinical consensus best practice guidance: a report from the International Restless Legs Syndrome Study Group.
I’d focus mostly on the process and gather verifiably - good information. Medline, PubMed, NIH, etc.. It’s a big decision esp. with severe RLS which is probably a thorn in your side daily.
Here are the major classes, the 2012 Guidance for them and my experience with them. I don’t think the newer MAYO Algorithm reflects that any of these recommendations have been altered outside of DA’s now being second line treatments primarily due to the risk of augmentation.
Dopamine Agonists: As you’ve decided on a dopamine agonist I wanted to ensure you know that there are other DA medications. You may want to research which ones have the lowest risk of augmentation as well as their side-effect profile. Thy are relatively easy to transition from one to another. I think they should be on-the-menu. DA’s ARE the most effective treatments , but augmentation is a concern. However, some others here have already commented that they have taken DA’s for years and decades without augmenting. The first medication I tried in 2003 was Mirapex, then Requip. They had little to no effect. Didn’t take them long enough to put me at high-risk of augmentation.
One other main concern with DA’s, that doesn’t get talked about enough is the relatively-high (5-17%) risk of developing impulsive behaviors - spending, eating, sexuality, gambling, etc.. For most, these are brand-new, never-done-before behaviors. With the pharmalogical information that now comes with the DA medications per a 2014 FDA requirement for the pharmacy companies, you should be aware of this side-effect because of the potential for major, destructive, life-altering behaviors. On drugs. Com, under Requip or Mirapex side-effects, there is a statement about DA’s I would recommend everyone to read, especially since the warning specifically states that the patient may not be able to control the impulsive behavior or even understand that he/she is doing them with fully-conscious awareness or control. The doctor likely will not mention this to you so wanted to make sure you are aware.
There are risks/problems for the first-line treatments and medications as well.
Iron therapy has not been shown to have strong evidence of effectivenes. From the 2012 ”Long-term treatment of restless legs syndrome/Willis–Ekbom disease: evidence-based guidelines and clinical consensus best practice guidance: a report from the International Restless Legs Syndrome Study Group: “Evidence is insufficient to make a recommendation on the intravenous use of ferric carboxymaltose or iron sucrose in the long-term treatment of RLS/WED”.
Gabapentin or Horizant: I can’t think of any major side effects with these, except initial lethargy, dizziness. I think there is “concern” about an abuse potential but that doesn’t seem to be well established. Gabapentin was the first medication that worked “a little” for a few months for me. However, the paper above states: “Recommendation: Evidence is insufficient to make a recom- mendation on the use of gabapentin in the long-term treatment of RLS/WED”.
Pregabalin: From the same paper: “is effective for the treatment of RLS/WED for 1 year (Level A). is insufficient evidence documenting the effectiveness of pregabalin to make a recommenda- tion beyond 1 year of treatment”. I had good success with Pregabalin for about 14-16 months but in combination with an opioid and a benzodiazipine.
Opioids / other narcotics : There is moderate evidence that these work pretty well. Different ones are more accessible, more helpful than others for different people. Obviously there is an issue, at least in the US, of convincing a doctor to prescribe opioid's for non-pain patients, period, especially if the MAYO’s recommended doses don’t control your symptoms adequately, you need an increase, you take other meds that are contraindicated or have a condition that disallows it’s use e.g.) sleep apnea, some occupations, etc. And then there is addiction risk, dependency and withdrawals if you get “cut-off” for some reason. The FDA and CDC continue to lower the total # of opioid prescriptions allowed in the US/year.
Benzodiazipines: For me, the most effective medication by far (for PLMD at least). But, a medication that you have to realize that once you start it, you may never get off of it. I’ve gone through Oxycodone and Clonazepam withdrawal 3X each. Clonazepam is far, far worse (more intense and lasts much longer) especially as you get to lower doses. This may be worth a try but only if it really, really helps, you understand that you may need regular increases as tolerance develops and, most importantly, a verbal (preferably written) guarantee from the prescribing doctor that no matter what happens, no matter how serious, that he will gradually taper you off for 6 months to a year….at your own pace.
As I mentioned, I haven’t been through augmentation so I don’t fully understand, personally, how the experience compares to the risks of the other medications with major risks. is augmentation worse that opioid withdrawals? If it’s not as bad as opioid or benzodiazepine withdrawal (and the stress of possibly being forced to discontinue it at some point), I’d go with Pregabalin first, the DA’s second and opioids/benzos third. You may want to know the early warning signs of augmentation really well - catching it early is big.
And for severe, refractory RLS, there’s always using a combination of medication classes.
Also, if daytime fatigue is a major symptom for you, your doctor may provide a stimulant medication - occasionally used off-label in the US..
Best wishes.
Ircam-what do you mean you have "drug-induced plmd?" I feel like my old rls has changed to plmd since I got off the DA's. I have totally different symptoms than I used to. Thanks!
I never had a single symptom or episode of RLS or PLMD up until I discontinued Sertraline that I was taking for depressive-like symptoms (which likely were a result of undiagnosed sleep apnea). While on Sertraline, my legs felt a little “buzzy” very infrequently but did nothing for the sleep apnea (lol..aug). When my doctor discontinued it (150mg) , he did it over (just) three days. Two days after the last dose, I went to lie down to sleep and “boom”, I had full-blown, severe PLMD. My legs and feet would involuntarily kick every 15-45 seconds. It occurred all day, all night - whenever I sat/lay down to rest/relax. It was bizarre.
I was initially diagnosed with RLS but those symptoms were likely mild sciatica. Each movement, especially in the early years, was preceded by a 3-5 sec “build-up” of an electric-like feeling in my legs, then an powerful involuntary movement in which the limb was held stiff in a cramp-like state for about 3 seconds, then a sudden return to relaxation. All-in-all, about a 7 second process.
It affected my legs and calve muscles primarily but about 1/10 movements were in the upper body - shoulder and arms. I tried Requip and Mirapex for 3 months each but they had little to no effect.
Over 20 years, many doctors, many medications and combinations of medications, my symptoms have changed. Once I began Clonazepam, the daytime symptoms all but disappeared and have returned when I decreased the dosage on several occasions. I was officially diagnosed with PLMD in about 2013. The movements have become less violent/intense and now are 90% upper body - mostly torso (abdomen, hips) and head/neck. The electric-like build up is closer to 1/2 second and they don’t have a prolonged hold of the muscles. However, the movements now seems to be “rolling” through my body i.e. almost every time more than 1 of the mentioned body parts is affected. On 5X video speed they look like a shuddering or wave moving through me. They still occur every 15 - 45 seconds. Despite those ”improvements”, I still have approx 60 - 90/hr while asleep with about 1/3 of those resulting in an arousal and severe daytime sleepiness is still a daily problem. This is a particular problem since a typical PSG only has sensors on the calve muscles, thereby missing 90% of the movements. Except for the Clonazepam’s effect on daytime symptoms, it doesn’t appear that any specific medication changes initiated the changes.
I’m pretty sure what I have is Antidepressant Discontinuation Disorder (ADDD) or Antidepressant Withdrawal Syndrome (AWS). Parathesia’s, including Myoclonus, RLS and PLMD, can develop and persist. I developed every symptom at the same time as the movement disorder. Some of them continue 20 years on e.g.) bruxism and akathisia are both well-documented symptoms I continue to have.
I’ve done a lot of medical research over the years and can say with some confidence that RLS, PLMD and Myoclonus are likely all closely related variants of a class of movement disorders - possibly with iron, genetics, toxins or neuroleptics all creating similar neurotransmitter patterns/problems. For examples:
-the electric-like feeling I used to and, though shorter now, still get before each movement sounds quite a bit like how RLS feels to many people - pain, buzzing, creepy-crawling, electrified, etc.. If I didn’t have the movement, I wouldn’t be able to sit still. This is why I tend to look at RLS as, possibly, incomplete PLMD. The muscles have the stimulation but something is preventing the nerve from depolarizing (firing). 80% of RLS sufferers also have PLMS/D, but not the other way around. This would make sense of that evidence. Many women develop RLS during pregnancy. Perhaps the same cause for the mother - low iron, toxins, genetics, medications or the nerve impulses themselves, etc are passed to the baby. Maybe this is a large chunk of what we classify as RLS.
- all are thought to involve dopamine in one way or another. One study found that 50% of opioid users going through detox developed RLS during the process. Again, a rapid reduction in neuroleptic.
- getting up and moving around a little will result in a 5 minute reprieve once I relax again
- the same medication classes are used for RLS, PLMD and Myoclonus. I recently started Neupro, which has been somewhat effective but is wearing off. It doesn’t appear to be having an impact on the movements but is helping with daytime energy.
- they all have a circadian-rhythm interaction.
- etc..
One medication may have accelerated the changes to my disease. The only recommended treatment for ADDD or AWS is going on the same medication - Sertraline in my case - that created the problems and then taper off of it very slowly. I was reluctant for years to try it but 2 years ago I did. 3 months on 150mg, then 2 months discontinuing. This may have more of an impact than I once thought but as far as the impact on my sleep, it hasn’t made much difference.
When I start writing, I tend to run on. Hope you found some helpful ideas. Let’s me know if you want to talk more.
Best wishes.
Thank you for the excellent details. How absolutely terrible that you became symptomatic just from taking a drug! Ugh. That is brutal and I didn't know it could come on like that-if one had never had rls before. Or at least I thought it would be a short lived withdrawal type rls.
2012 is old news. Pregabalin certainly works beyond 1 year and gabapentin is recommended for the long term use for RLS. And increasing one's ferritin to over 100 helps up to 60% of people with RLS. As far as the dopamine agonists, up to 70% of those on it will suffer from augmentation, and search augmentation on this site to see how hard it is to get off it. Some have said it is harder to get off it than heroin. Yes 30% won't suffer augmentation and they should stay on it, but if just starting why take that risk.
I’m just quoting what the experts reported back in 2012 Sue. The passage of time isn’t any guarantee that the data is obsolete or any less useful. However, if new evidence has come to light since that time, that is different. In a quick search, I couldn’t find new evidence regarding what you say about iron, Pregabalin or Gabapentin. If you have any links, they would be appreciated as I too want to make sure I’m passing on good information to others and for my own care. What I did/have found is that since DA’s are no longer recommended as first-line medications (some appear to put it on the same level as a poison), there are stronger recommendations for the others (which makes sense with the limited treatment options), but I’m not finding studies that have determined that these treatments are any more (or less) effective than they were thought to be in 2012. Overall, we need more research and more options.
Again, with limited treatment options with limited success for any of the treatments, I don’t think it’s wise to take the most effective known class of medications off of the menu completely, which seems to be where things are headed. People should be made aware of all of the options and risks in order to make the best decisions for them. The way things are currently being communicated about DA’s, even by experts, is in my opinion overly emotional and lacking in evidence.
For iron: sciencedirect.com/science/a...
Comparison of DAs versus pregabalin pubmed.ncbi.nlm.nih.gov/245...
As far as the effectiveness of gabapentin and lyrica beyond one year, all you have to do is read the stories of many people on this forum. The Mayo Clinic Updated Algorithm on RLS certainly recommends long term treatment with them.
Again search at the top of this page on augmentation to see how people have suffered from it.
I have been taking pramipexole for years, occasionally reverting to Ropinerole. My RLS got worse as I got older. At the moment I am in control. I am 7 9 and suffered this awful thing since I was 2 0. When no one had heard of RLS. Let alone treatment. I have never been offered any other medication other than pramipexole or Ropinerole. Seen all specialists never any answers. Stumped!!
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