I've been taking Pramipexole for 18 years ( .75 mg daily ). for my RLS.My Dr. is starting me on Gabapentin to replace the Sifrol.
I am now taking 75 mg. Gabapentin daily in addition to Sifrol. Two days ago I reduced Sifrol down to .50 mg. daily.
I am very knowledgable about RLS having studied it for ten years and published a book on it with my Doctors support a few years ago. I have once been through Augmentation. My iron levels are high and checked regularly. My symptoms are keeping me awake now and I expect after so many years it will take some time to ween off Sifrol.
My Dr. is wonderful but we have worked together all these years and he is no expert on RLS.
I would like to know what dose od Gabapentin I should be taking to get relief as the Sifrol gets reduced.
I live in the south west of Western Australia where there are no neurologists available.
I am hoping to get support by joining here.
I do understand that my Doctors advice is vital to follow but I am hoping to get informative advice here.
Thank you mindly.
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Katyparis
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You are reducing the pramipexole too quickly. I would suggest going back up to the .75 mg and starting over again. You were on 1 and a half times the maximum. To 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. But in the long run, you will be glad you came off it. As you are probably aware dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin. Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off pramipexole for several weeks. Although some do find it helps to start it while still on pramipexole. After you have been on it for 3 weeks increase it by 100 mg every couple of days until you reach 900 mg. I would wait to increase it further until you have been off pramipexole for several weeks. Then increase it 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. 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. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of it. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." 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 as you said or he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Thank you Sue. What is your medical training as I read this as it is medical advice. I was started on Gabapentin 25 mg 3 x wks ago. Now I'm taking 75 mg daily yet you say the starting dose is 300 mg. That seems extreme as a starting dose when my dr started me on 25 mg.
I’m new to this forum. Your response was so helpful. Thank you for all of this information to get me started! I have quoted parts of your response where I want to emphasize it and ask questions.
I was prescribed Azilect because I have very mild Parkinson’s (young onset, I’m presently 47) Now I have RLS to boot and I believe the dopamine agonists is the culprit.
“Wait until the increased symptoms from each reduction has settled before going to the next one. “ Can you please explain “settled”? Will the symptoms be worse at first?
“As you are probably aware dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin. Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off pramipexole for several weeks. “
Are dopamine agonists no longer the first line treatment because they make RLS worse over time?
“If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of it. “ That’s important to know but challenging when taking magnesium to aid in sleep.
“many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't as you said or he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...”
That is sadly true and I was prescribed Azilect and am much much worse now and don’t know what to do. I assume the Azilect has literally killed my struggling dopamine receptors.
Azilect is not a dopamine agonist and should be safe for RLS. I can't find anything that says you can suffer augmentation on it. Yes the symptoms will be worse at first when you reduce the dose. By settle I mean they will get a little better and not change. Dopamine agonists are not longer the first line treatment because up to 70% will suffer from augmentation.
This is very helpful, but the link doesn't really show the weaning process as you explained. Is there a link for that so I can show my doc? I have gone from .25 mg pramaprexole two months ago, to a tiny piece...I took an emery board and started filing off from the tablet. Not very scientific, but it has worked for me. the size I'm down to is literally the size of the circle part of this "p", so out is tiny.. I feel so much better! I do have some breakthrough at times at night but it is minor. My doc told me to start skipping a night...what a mistake!!!!! Is it possible to slowly go down to granules and not need anything else? Do you think I am at the point where I need the gabapentin?
Unfortunately I don't have a link but that is what my doctor had me do when I was weaning off a DA and others who have followed that advice on this forum has said it worked.
You might want to get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) to measure what you shave off although you seem to have done well without it and are so close to being done.
It's possible if you are talking about using a low dose opioid to help out at the end. Yes you can start the gabapentin now since it takes 3 weeks to be fully effective.
My little jewelry scale didn't work but using the emery board does. I think the weaning off is pretty individual per symptoms. I cannot believe how good I feel and my symptoms are low. I can nap without symptoms, take long drives with no symptoms. I am completely shocked! We have a new puppy so naps are sometimes needed. 😂
I have printed everything out from Mayo and Dr Winkelman. Will head to clinic this week. It seems that the dose for Gabapentin is split doses of 600mg 2-3 times after dinner time.
I am also on Low dose neltrexone which I believe is helping with the symptoms.
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, 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.
The table of meds on the RLS UK.website is printable and shows the average dose and when to take it.
I agree with SueJohnson- you're reducing too quickly. Slow down & you may need a low dose opioid to deal with the increased severity of RLS with each reduction.
Good luck. It's tough but well worth it. The RLS severity will be vastly reduced 2 to 3 weeks after your last dose of Sinemet.
Tramadol, oxycodone or codeine will all help reduce the withdrawal symptoms with each reduction of Pramipexole. If cannabis is legal where you are, get hold of some. I found cannabis was the only thing that helped me during withdrawal. Tramadol didn't seem to help at all, probably because it's the only opioid that also causes 'augmentation'.
My GP initially refused to prescribe any opioids but my MS neurologist stepped in & instructed her to give me a prescription.
It only worked during withdrawal when I had gone days without sleep. Vaping cannabis knocked me out for 30 mins. It allowed me to get through the 2 week's brutal withdrawal.I've tried it at other times and it doesn't stop my RLS but it does send me into deep sleep for a few hours.
I know cannabis works very well for many people. As with all drugs for RLS, we all seem to respond differently.
Agree with everything Sue and Joosgs mentioned. I came off a DA (requip) and gabapentin only helped after being off DA for a few weeks. I had only been on DA for a few years so I didn't suffer as much as some. The weeks right after completely stopping DA's are the worst but it will get better. I didn't notice any side effects from Gabapentin but I still have Chemo brain so not sure which causes my bad memory maybe both. Good luck
Hello, I have experienced weaning off Sifrol (Pramipixole).The slower the better when weaning off and I used 5mg of oxycodine at night to help me in the last few months.
I also was living in the South West of WA.
I had a phone appt with Dr Richard Warren, a sleep specialist in Perth.
He is very knowledgeable when it comes to RLS.
My restless legs began when I was around 18 years old, I am 70 this year.
I now use Temgesic to successfully control my RLS. This is a low dosage of Buprenorphine.
It took many months after slowly weaning off the Sifrol for my brain to adjust and heal.
I took Sifrol for approx 12 years and when ever I told a doctor that it was no longer giving relief, they would prescribe a higher dosage.
I was eventually taking 3.00mg each night, not realising this was six times over the recommended daily dosage. Fortunately a pharmacist alerted me to this and questioned why I was taking such a high dosage and asked what condition I had. This all came about while I was in hospital for knee surgery. His remark started me on a 2 year journey to slowly wean off Sifrol.
Then I joined this group which has saved my life due to the knowledge I have gained and the support I have been given. Kind regards Julie.
Thank you Jules. My Dr is so in demand that I cannot book in to see him until May so I do not feel as though I have support with meds right now. I have read that Horizant is better than the general Gabapentin as it works faster and it is carried to the large intestine which helps with digestion. I live in Albany. WA. I will try to contact Dr. Warren in Perth. regards. Katy
Re appt with Dr Richard Warren sleep specialist. I forgot to mention that you will need a doctor's referral to have an appt. But any GP can arrange that. And I did my appt as a phone appt. He is very knowledgeable when it comes to RLS. Kind regards Julie.
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