like everyone here i suffer from restless legs. it started 2-3 years ago but i could manage at the start. about 2 years ago i went to the doctor and he prescribed me pramipexole (0.180mg). the issue was lifted and i didn't think much about it until a few months ago when my arms started twitching as well and i had a horrible feeling in my chest as well. i contacted my doctor and he said to up the dose. i didn't, because i hate being dependent on drugs. it happened only when i had alcohol and or cigarettes, so i figured i just quit those ( i only do it very occasional and I've been meaning to stop doing it). 2 weeks ago i had a really bad episode at night where my arm hurt really bad. i decided to do some research myself before taking a higher dose.
after reading up i decided i wanted to get off it and a week ago i started by halving my dose, stopped sleeping but didn't have any severe side effects, after 4 days extreme depression and dread came over me. i did 2x days of 3/4 my dose but i got to the point where i was seriously considering killing myself, so i went back on my normal dose. it went better but i still feel deeply depressed and my RLS is bad.
its still more then a month till my appointment with a neurologist, and i have a few questions which maybe some of you can answer.
- did anyone here suffer from DAWS from such a low dose change and how long did it last?
- what where your experience with widrawals from DA?
- if you got back onto your normal dose, how long did it take for you to feel normal again?
- does having such a bad reaction from such a small dose mean ill be suffering from DAWS for a long time?
thanks for your input
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Mortlok
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Prampexole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. As you are probably aware you are augmenting on it and need to come off it. You were smart not to increase the dose.. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. To come off pramipexole, reduce by 1/4 of a tablet 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. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 taking gabapentin as it will interfere with the absorption of the gabapentin. 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 as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a... For the depression ask your doctor for Trazodone or Wellbutrin.
both Gabapentin and Pregabalin are horrible drugs too. I’ve detoxed from every known recommended drug for RLS including these and have gone through absolute HELL. I am very concerned that even these two are now the first line treatment as it once again goes against everything the body should be doing. My ferritin levels are excellent and my RLS drug detoxing, whilst horrific, is now improving overall so that I can function . Personally, I would say to anyone with RLS and PLM etc, don’t start on anything, ever. There must be another way because this is criminal. Time for a class action surely not yet more drugs.
I agree gabapentin can affect the liver . I've been on it for another reason and have come off it because of liver problems . I have rls but cope best I can without drugs !
Have you had your ferritin checked? Improving it to 100 or more with iron 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 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 advice. Also see my reply below on things that make RLS worse and things that make RLS better.
They are not horrible drugs. For many they completely control their RLS. For a few they have side effects that can not be tolerated. All drugs have side effects. Stopping them cold turkey is not advised as it is not advised for dopamine agonists nor opioids. If you wean yourself off them very very slowly, you will have NO withdrawal effects. Apparently that did not happen in your case and I am sorry your doctor did not advise you of this.
Gabapentin is dreadful and I had awful side effects with it, and subsequent withdrawal. I have had RLS for decades so have been through every regime and it is my opinion now that there is NO answer without the risk of drug damage. Sadly it has taken the medical side far too long to move away from DAs and most doctors continue to prescribe them at random. As a retired health professional myself, I am appalled at what has happened to not only me but millions of others due to this lack of knowledge.
I do see below that you finally went back on gabapentin and withdrew slowly without problems. Yes I agree 100% that doctors do not know enough about RLS and continue to prescribe DAs. This happened to me. I was prescribed ropinirole in increasing doses up to 4 mg as I suffered augmentation. Luckily at that point he referred me to a sleep specialist who was knowledgeable and I slowly weaned off ropinirole and on to gabapentin which now completely controls my RLS. Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
I was weaned off as per medical instructions and the side effects were dreadful. I have been a slave to RLS and associated drugs for longer than I care to remember and have had a battery of test over the years….all to no avail. I avoid any triggers that I discover and manage it as best I can, but it is very disruptive to everyday life.
Whoops - it was GaryHB that went back on gabapentin and withdrew slowly without problems. Your doctor gave you bad advice, as you should have been weaned off much more slowly.
if you aren’t taking anything right now and still dealing with RLS. You might want to try CBD. I went off everything because of side effects. It was a nightmare being on them. The CBD controls my RLS 95% of the time. And even then it it very mild and a short walk around the house gets rid of it. There are specific instructions as to starting CBD and finding a reputable company. Some over the counter can make you sick.
I agree. Experienced awful DAWS coming off Pramipexole. Tried Pregabalin and then Gabapentin for 6 months. Coming off Gabapentin was just as bad. Experienced so much anxiety and depression.
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, estrogen, 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.
Beautiful summary of non pharmacological triggers and aids Sue. Thank you! You are a star on this forum. Maybe someday soon, some brilliant scientist will actually find a cure. I am happy an alpha 2 delta ligand plus select tricks from your concise list works for you. I am not there myself -yet. There are other regular bloggers like Joolsg who are clear thinkers with genuine sympathy and empathy.
hi Sue. My problem is I now have a limited supp,y of Ropinirole (just can’t get it in Spain) and doctors here just said take this instead. No gradual lowering of the dose. I now have pramiprexol .18 mg and I am taking this with 1mg Ropinirole (half my normal dose). I have no idea whether this is right or whether the dose of pramiprexol a sufficient substitute for 2mg ropinirole. I intend to ask for my iron levels to be checked on my next visit to the doctors. I also take Palexia for a degenerating disc in my back which causes sciatica. In the meantime, any advise you can give will be gratefully received.
The equivalent ropinirole to pramipexole is 4 to 1, so .5 mg pramipexole is equivalent to 2 mg of ropinirole. So what you are taking is less than what you were taking. However if it controls your RLS you might get by with a lesser amount. The opioid you are taking is probably helping.
You can ask your doctor for smaller dose pills. They come in 0.088 so ask for your next prescription to come in lower dose and you can use a pill cutter to halve those. Reduce by half a 0.088 pill every 2 to 3 weeks.DAWS doesn't affect everyone but usually resolves when you go back up to the previous dose. In your case, you've gone back to the original dose but the depression is still there.
Don't start reducing again until you speak to your neurologist and in the meantime, read everything you can about Pramipexole and DAWS.
You may have had a severe reaction to such a big dose drop so quickly.
These drugs mess with brain chemicals and should be reduced very, very slowly.
Some recommend finding a pharmacist who can compound the pills and produce a liquid formula and reduce by micro doses over a year or more. That could be a possibility to avoid severe depression.
Sade anti depressants are trazodone and wellbutrin.
If your neurologist doesn't know much about augmentation and DAWS, you will need to see a new one.
Yes that happened to me too. After 20 years on Pramipexole I stopped it dead. My Doctor never gave me any advise on the issue. I then began trials of other treatments. However I sunk into chronic anxiety and depression which went on for months. It was very dark. It was only Google that told me about DAWS. I found some medications helped with the anxiety but not the rls. Pregabalin and Gabapentin helped with the anxiety but not the rls. Coming off Gabapentin when it did not work also caused horrible withdrawals too - so I had to go back on to it and stop it very slowly over months which worked well (I learned by this time). I am now on Tramadol and that really helped with the anxiety and depression - it does give a sense of euphoria and for me has proved to be the most effective treatment for rls. Nothing else has worked for me. I hope this helps - dont give way to the despair in your dark days. Find someone to talk to - ending your aloneness in your suffering is key to getting through it.
Your post is almost identical to mine. About 2 years on 0.180 and also started augmenting, took awhile of researching before I worked out that it was augmentation. I also started feeling anxiety and dysphoria (I call it dysphoria as I think it's different to depression) in the evenings even though I was maintaining my dose. Like you the doctor wanted to increase the dose which I was hesitant to due to the fear of dependence.
About 7 months ago I decided to get off Pramipexole and over 3 weeks breaking my tablets down I went off completely. The restless legs wasn't too bad, a few bad nights but it went away. What didn't go away was anxiety and dysphoria, after a week completely off I went into a state. I couldn't get out of bed, slept for 16hours a day, and was in a state of panic any waking hours. After 4 days of this and some research I figured out it might be DAWS and desperately took a quarter of my pramipexole dose, within an hour or so I started feeling better. I knew at that stage it was DAWS.
I'm about 7 months into my journey and am feeling a lot better. Not perfect but I can see light at the end of the tunnel. I've taken the approach of cutting tiny pieces off my tablets and found splitting my dose up in the morning and evening to spread the medication across the day. I've also hit up all the vitamins and minerals I felt helped.
thanks so much for your reply, its crazy but i didn't suffer from RLS that bad before, its since the medicines that i got it really bad...
im back on my normal dose and today ( after 4 days back on it) i feel normal again. gonna take a little break and then start with reducing it again but extremely slow. good luck!
I'm much like you. My rls wasn't that bad until the medication. Good luck and please keep us updated. If you have any questions or need some reassurance please reach out
The safest way to withdraw from Mirapex/pramipexole is to have your physician write a prescription for a compounding pharmacist who can then convert, for example, a 0.25 mg tablet into a 15 mL liquid and then you can withdraw very tiny amounts each day (tricking the CNS). Otherwise you are looking for one hellish set of withdrawal symptoms called DAWS. It used to be thought that only people on high doses of Mirapex/pramipexole suffered from that syndrome but more people are beginning to experience it and some physicians are actually prescribing opioids to deal with the syndrome instead of a micro taper. I can help you with the math if you need it. There is a relatively new drug out called Horizant which seems to be the state-of-the-art for treating RLS otherwise I would go back to good old Valium and don’t worry about its being addicted because you’re going to be stuck on it some med anyway.
Horizant is for 24 hour RLS and is very expensive in the US and is not covered by most insurances, although if one is less than 65 years old Horizant has a prescription savings card which makes it inexpensive. It is not available in the UK.
If you contact the pharmaceutical company they will give you information about a special plan for those who are not covered by insurance or whose insurance does not cover that drug. I was first told that it would cost $500 for a month's supply. I now pay $180 for a three month's supply.
I started taking Pram about 4 yrs ago. Quickly went up to 6 per day. Eventually reached augmentation and have been withdrawing by 1/2 tablet every fortnight for a few months now. For what was originally a miracle drug, coming off it has sent me to hell and back and back to hell again . Gotta get it out of my body before I can try something else. I’ve got 2 tabs or 4 halves to go. Right now, I’d rather be dead it’s so awful.
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