I have taken pramipexole for rls for over 10 years. Sometimes it really helped and sometimes not so much. Now I have been switched to gabapentin as my pharmacy is having trouble getting the prama.
It's only been 4 nights now but it is not going well. I have hardly slept at all. My coordination disappears after I take the gabapentin. I have the urge to walk walk walk but I am walking into things. I understood that it will take a week or two for my body to get used to the new drug but has anyone made this switch cold turkey and will these side effects lessen over time?
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Noreo
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Hi Noreo, first off, we need to know why you’re on DAs? What happened 10 years ago that required this drastic step? Do you have any other medical conditions or are you taking any drugs like SSRIs, calcium channel blockers, PPIs, Zantac or melatonin?
I don’t know much about withdrawing from DAs, but I do know it should be done very slowly, not like a light switch and sometimes an opiate is necessary for the weeks and months following cessation. In the meantime, you might want to try 50mg of ferrous bisglycinate on an empty stomach about an hour before bed with your doctor’s permission. It completely rids many people of RLS in one hour for one night. However, since your dopamine receptors have been beaten up by the DAs, it may not be 100% effective.
Lastly, I know it’s best to take the Gabapentin in the evening only. Some people will take 600mg at 8pm and then another 600mg at 10pm. Anything more than 600mg at one time is not completely absorbed. Either Sue or Jools will be along in the morning to give you more advice on the DA. They will want to know your history as well.
Welcome to the forum. You will find lots of help, support and understanding here.
SalemLake is right. You shouldn't stop a DA like pramipexole cold turkey. Since you can't get pramipexole, you should switch to ropinirole. Multiply the amount of pramipexole you wee taking by 4 to get the equivalent amount. To come off ropinirole, reduce by .25 mg every 2 weeks or so. (If you can get pramipexole and you are just switching because the pharmacy is having it trouble consistently getting it then stay on pramipexole and reduce by one half of a .125 mg tablet .)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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin the beginning dose is usually 300 mg gabapentin . It won't be fully effective until you are off ropinirole for several weeks. After that 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 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. Most of the side effects of gabapentin 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)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 .
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...
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, don't eat a heavy meat meal the night before, fast after midnight and 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. 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.
Meanwhile 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, eating late at night, 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, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, 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.
Sue - I am just now switching from ropinirole to gabapentin. I am getting iron tested next week. I was just curious what regiment you take personally and when. I really respect the advise you share on this forum.
I agree with SueJohnson. You should NEVER stop Pramipexole cold turkey. Pramipexole is a dopamine agonist and withdrawal can be harder than from heroin or cocaine. Your RLS will increase in severity, you'll have all over body RLS and severe leg jerking and walking and moving is the only way to get relief. But you're exhausted through zero sleep.Send your doctor articles on DAWS and ask them to look at rls.org and the Mayo Clinic Algorithm for RLS.
As Sue says, go back on a dopamine agonist to stop the horrendous withdrawal and Slowly reduce.
Gabapentin won't help RLS much until 3 weeks after you've completed withdrawal from Ropinirole.
Side effects of gabapentin are dizziness, loss of balance, weight gain, water retention, but they settle after a few months.
The Mayo algorithm sets out the doses, timings and how to increase. It also makes clear that raising brain iron should be first line treatment. So ask for full panel fasting blood tests and ensure serum ferritin is above 100, preferably 200. The majority of RLS cases can be resolved by increasing iron.
Thats scary. I've been on pramipexole 0.18mg for at least 10 years and it's always worked well for me. I've not had any problems getting it as yet , what part of the country are you in ?
Thank you to everyone who replied to my question. In view of the problems I have been having both with stopping my old drug pramipexole and starting a new drug, gabapentin my doctor is now having me wean back off of gaba. I am taking 300 mg every other day for a week and then start taking ropinirole instead. Hopefully things will improve.
As things go now I am still having trouble sleeping and then am drowsy all day. The timing is unfortunate since my wife and I leave tomorrow for 2 weeks in Germany and Poland. On the positive side I won't be driving. I will only have 1 gaba. left to take on the trip and then will start the ropinirole. I am fairly confident since I have taken ropin. before this.
My biggest hurdle and fear is that I will go raving mad on the 10 hour flight from Tampa to Berlin. In the past I have taken an extra pill before a long flight. We frequently fly to Denver a 4 hour flight and this has been a big help. But on this flight to Berlin I'm not sure what to do. I have thought of taking dramamine or maybe an OTC sleep drug to make me drowsy. Or I have thought of having a cocktail in the airport to maybe put me to sleep on the plane. It sounds a little experimental, but 10 hours of twitching legs would not be a vacation.....more like a torture. I would welcome any suggestions.
Thank you Sue. Johnson. I took the ropinirole before my flight and that lessened my discomfort so that I they did not have to take me off the plane in a straightjacket!
I did and my experience has been excellent, I have suffered for 40 years, and gabapentin has been the best medication so far, I have taken them all. But I guess everyone is not effected the same way. Good luck.
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