I'm new to this group and did read a few posts on this topic, but have a follow-up question. I was on 4 mg. Ropinirole and the RLS was getting worse. Just got a new prescription for Pramipexole 0.125 mg. which I'm supposed to take for 4 nights then ramp up to 0.25 mg. for 4 nights then up to 0.5 mg. So last night I took the Pramipexole and not the Ropinirole and my RLS was definitely still acting up, but not as badly as on the Ropinirole. Could not sleep so gave in and took a 2nd Pramipexole so a total of 0.25 mg. and still did not get full relief. Was up all night. If you have been through this I would appreciate some advice - I was told not to take the full 0.5 mg. dose right away, but I guess I don't really understand why not. Not sure how many more of these sleepless nights I can take. Thanks in advance and look forward to learning a lot now that I've found this group.
Changing from Ropinirole to Pramipexole - Restless Legs Syn...
Changing from Ropinirole to Pramipexole
Why in all that's crazy are you jumping from the fire into the frying pan?
You are changing from one dopamine agonist to another.
Absolute disaster awaits you.
Please read almost any of Sue Johnson's replies to many posts of a similar nature.
You do indeed have a lot of reading and researching ahead of you.The doctor who switched you to Pramipexole from Ropinirole clearly does not understand the mechanism of dopamine agonists.
Once you suffer augmentation on one dopamine agonist, you should very slowly get off it. Switching to another dopamine agonist simply prolongs your suffering.
So, start by reading the RLSUK website articles on augmentation and withdrawal from dopamine agonists and iron therapy.
Then read all the posts and replies from the last week.
You will never be free of severe RLS unless and until you get completely off dopamine agonists.
Tell us which US state you are in and we can direct you to a doctor who understands RLS.
You should go back on Ropinirole, the dose you were on. Then slowly reduce by 0.25.mg every 2 weeks.
Get full iron panel blood tests ( morning, fasting) and raise serum ferritin above 200ųg/L preferably by pills every other day, or an iron infusion.
Check for trigger meds ( anti depressants, sedating anti histamines, statins, beta blockers and PPI meds).
Join the US foundation at rls.org.
Here's a useful article to read and a great website to update your knowledge.
sleepreviewmag.com/sleep-tr...
I am not the original poster, but I also live in the US, Texas, Dallas area. Can you recommend a doctor for me?
I only know of Dr Ondo in Houston. However, if you join rls.org, the US foundation for RLS, they have local help groups.Or SueJohnson may know someone in Dallas.
My dad was a patient of Dr Ondo for Parkinson’s disease for several years until he passed. I wonder if he will do telehealth.
Most will do tele health, although the first appointment may have to be in person.
I very rarely use drugs ,find the pain points🤔
Experts in RLS no longer recommend dopamine agonists - pramipexole, ropinirole, rotigotine - for first line treatment. The following is extracted from the Mayo Algorithm on the management of RLS:
"Dopamine agonists are an effective treatment option for RLS and were formerly used for first-line treatment of RLS. However, because of increasing awareness of the high incidence of dopamine agonist–induced worsening of RLS symptoms known as augmentation and the risk for development of impulse control disorders, alpha2-delta ligands should, when not contraindicated, be tried first"
You need advice on *slowly* weaning off the DAs from people here such as Joolsg and SueJohnson .
(UPDATE: I see that, as I was slow posting this - while making supper - Jools has already posted).
Welcome to the forum. You will find lots of help, support and understanding here.
You are suffering from 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.
You were on the maximum amount of ropinirole. And the equivalent amount of pramipexole to that would be 1 mg so by taking only .125 or even .25 mg you were suffering from a steep withdrawal.
So I agree with Joolsg. Some of what I will say repeats what she said. Go back on the ropinirole or you could reduce using the pramipexole in which case you would need to go up to 1 mg so I will give you advice for both. DO NOT be tempted to stay on pramipexole because you WILL quickly augment.
First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut.
To come off ropinirole (pramipexole), reduce by .25 mg (pramipexole half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They 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. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) for several weeks 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 as the peak plasma level is 2 hours. 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 split the doses with pregabalin)
Most of the side effects 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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...
I live in the US and if you tell me the city and state you live in I may be able to give you the name of a doctor who is knowledgeable about RLS.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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
SAVE THESE INSTRUCTIONS or the link to them because it is going to be a long while until you are ready to take gabapentin or pregabalin.
I'm in Santa Fe, New Mexico. I am going to send all this to my doctor but it's a holiday weekend so I'll probably end up in emergency. My Ferratin is 15 and Iron is 65 with saturation 20. I just took a 4 mg ropinirole and hopefully that will help, otherwise I will take more. I'm allergic to NSAID's so cannot take Ibuprofen or anything like that, just Tylenol. I am on antihistamines and an antidepressant. I just came off of Lyrica and Methylprednisolone for Polymyalgia. My whole body hurts all the time and the RLS is going to put me over the edge. Right now I am overwhelmed and maybe an emergency room will be the right choice.
ER know even less about RLS than most neurologists.
You need an iron infusion as your serum ferritin needs to be above 100, preferably 200. Your serum iron is fine. So, as soon as you switch to a decent doctor, they can arrange an iron infusion.
Sedating anti histamines trigger RLS so switch to cetirizine or loratedine.
Safe anti depressants are trazodone and wellbutrin so see if you can safely switch to those. Your anti depressants MAY have triggered the RLS in the first place.
Lyrica helps RLS, so coming off that will also have made your RLS worse. So get back on the Ropinirole and also slowly start the lyrica again. Then you can see a good doctor and get help while reducing the ropinirole very, very slowly.
There's a sleep centre in Santa Fe, But hopefully, Suejohnson will have the name of a good doctor.
newmexicosleeplabs.com/what...
I'm afraid to go back on the pregabalin because of my balance (ear) issues. Could I start gabapentin instead? I'm taking Lexapro.
Gabapentin is in the same class of drugs as pregabalin. But some find the side effects are different. So worth a try.Lexapro is an anti depressant and ALL anti depressants trigger/worsen RLS. Safe alternatives are trazodone & wellbutrin.
Hopefully, the doctor Sue recommends will review and safely replace trigger meds, arrange an iron infusion and help you through withdrawal.
Joolsg has given you some good advice. You definitely need an iron infusion, but while you are waiting for that or if you can't get it: If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Let me revise what I said since your ferritin is so low. Take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate.
Dr. George R. Uhl 1501 San Pedro Dr SE Albuquerque, NM 87108, Tel: (505) 265-1711. He is on the RLS Foundation Scientific and Medical Advisory Board. He is about an hour away from you but you probably will have to see him only once and then can use telehealth.
If you haven't joined the RLS Foundation I suggest you do so. It costs $40 but they have excellent information on their web site at rls.org and you get a monthly magazine.
I cannot thank you enough. I've made notes from your post and will take to my dr. and also see how long to get into see Dr. Uhl. Last night I did sleep after Ropinirole and muscle relaxants and Tylenol and Xanax. Already worrying about tonight. Am getting the iron supplement and magnesium cream. Opiods are so difficult to get here, but hopefully your detailed and fact based information will make my dr. feel better about prescribing them while I deal with this. I've been on and off them for many conditions, so it's not like I'm at risk for them. So infuriating when you're crying in pain and they say take some Tylenol. So wish me luck. Am calling the after hours doctor line now. Where are you in the US? Feel free to send me a chat.
I have had restless legs for years. Eventually on 1mg of ropinirole. Worked fine at first but not now. If I run out of it I am up all night. Have to take it earlier and still not working right. Drink tonic water at night. Nothing seems to work. At a loss of what to do as doctors are not any use.
Welcome to the forum. You will find lots of help, support and understanding here.
Tonic water is useless for RLS.
See my reply to long reply to AccountingIsSexy above 16 hours ago.
It would help us help you if you would indicate your gender on yourprofile.
Sorry I thought I had. 71 year old female in UK
love your username!
I take pareximole and dont like it. I have been on cannabis oil for six weeks and it s fabulous, my legs are so much better and I sleep well.
The replies to you that say you are going from one dopamine agonist to another are very correct. The ropinirole and pramipexole are very nearly the same drug. Like ropinirole it will cause a worsening of the restless legs after a period of helping them, they both cause augmentation of the condition. Unfortunately, many doctors are unaware of this finding and in my case they will keep increasing the dose with a period of relief, only to return to having a worsening of the condition. I was increased to 12mg (4mg 3 times daily) until I found out myself that the improvement only lasted for an unknown amount of time. Withdrawing from a dose that high was horrible and it took several months with the help of an opioid to lessen the pain. I will be on an opioid for the rest of my life due to no relief from drugs like gabapentin. You will be in a much better position where you are to go off of the dopamine agonists. Somehow you need to tell your Dr. to read current documentation about augmentation. A neurologist or sleep disorders physician may be more helpful to you. Take care, I'm thinking of you.
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