I am new to the space and the amount of information is amazing. I have read most of information from Mayo, Cleveland Clinic and a lot of info here. I am a 73 YO female and was diagnosed 12 years ago with RLS and put on Dopamine agonist at that time and have been on it ever since. I have symptoms every evening and require medication. I have experienced bouts of augmentation and the gabinoids were added along with low dose opioids, but the DAs were never deleted. I have symptoms of long term DA use, edema in legs, sleep attacks, ICD and the list goes on. I want to get off the Pramipexole but so far my internist and my neurologist that has been treating me for years seem unconcerned about the long term use of DAs. I am seeing it as a hair on fire situation. I have requested a referral to the local medical school movement disorder clinic for a second opinion, but the wheels turn slowly to get an appointment. I have reached out to my sleep specialist neurologist but don’t have an appointment for several weeks.
I am looking for advice on discontinuing Pramipexole and would like to do this as quickly as seems reasonable. I have knee replacement surgery in a couple of months and would like to be off Pramipexole.
I take 1.5 mg of pramipexole ER in the evening and in addition I have pregamblin, gabapenin and tramadol to add when symptoms warrant and I have been adding 50 mg of pregamblin and 25 mg of tramadol at night before bed. I am sensitive to most drugs so that is why doses are low. I do have side effects from the gabinoids, but these are not as bad as DAs
Any advice would be much appreciated.
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Fishhag
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Welcome to the forum. You will find lots of help, support and understanding here.
If you tell me where what city and state you live in I may be able to give you the name of a knowledgeable doctor as they are few and far between even at medical schools.
You are on 1 and a half times the maximum pramipexole dose.
You need to switch to the regular pramipexole because the slow releases oneswhich you have can't be cut .
To come off pramipexole, reduce by half of a ..125 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 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 or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Pregabalin is more expensive than gabapentin in the US. Normally you would start it 3 weeks before you are off pramipexole 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 as the peak plasma level is 2 hours.
Don't be in a hurry. I know you are anxious to get off it but going too fast will only make your symptoms worse. Listen to your body.
If you need more than 600 mg of gabapentin 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 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 (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).
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 ask your doctor for a full iron panel. Stop taking any iron supplements 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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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 like therapulse, 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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
P.S. your tramadol will help you as you withdraw. The usual effective dose is 100 to 200 mg.
Thanks for your reply. I live near Portland Oregon and OHSU (Oregon Health Science University) has a Parkinson’s and movement clinic but will take weeks to get seen. There is a large staff but I don’t know which are more involved in RLS.
I have had my ferritin levels checked and they are all good. Ferritin - 109, iron - 90, IBC unsaturated 303, total iron binding capacity - 393, iron percent saturation- 23. All this done end of December. The one complicating issue is that I have Hereditary Ellipocytosis. No one has any information if this can be a contributing factor. Have you heard of anyone experiencing Trans cranial sonogram to measure blood brain ferritin levels?
I only take blood pressure medication and no OTC.
What happen if you discontinue DAs cold turkey? I’m used to severe symptoms and I think I could handle them unless they are life threatening.
I am a 53 year-old woman and I have been on pramepexole for 30 years for RLS. I’ve only recently learned through this forum at dopamine agonists are not ideal.
I have first hand experience stopping this medication, cold turkey, and I would advise against it in the strongest way. Severe mood instability and suicidal ideation are what I experienced. For three months, I was a different person, could barely get out of bed and wanted to die every minute of the day.
I stopped because I was pregnant and a pediatric psychiatrist told me to “just stop taking it.” I consider myself a very strong person with a high tolerance to pain and there’s a lot of things that I tough through with my body. This is not something I would advise toughing through.
Over the past year, I have successfully tapered my medication by half. I cut my pills in quarters and take a quarter less for a month before dropping down again another quarter. I also started taking basic over-the-counter iron supplements.
I have an Aura ring that tracks my sleep patterns and three weeks after taking the iron, my RLS symptoms decreased by half.
I don’t know what will work for you, but I wouldn’t stop pramepexole cold turkey under any circumstances (except may be pregnancy).
On your surgery: Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. . Also talk with the patient representative ahead of time.
Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea.
You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"
After your surgery your RLS may get worse for several reasons - inflammation from the surgery, withdrawal from any opioid they gave you and if there was blood loss your ferritin may have gone down. All of these are temporary but may take awhile to go away. Increasing your pramipexole temporarily may help.
Thanks for the heads up. I had a knee replacement 2 years ago without issue. I had it done at a surgery center where I was done and home the same day. Most of pain relief was done with femoral block that lasted 3 days, mild sedation during surgery, and ondansetron for nausea. Easy peasy. I’m hoping this goes as well and I’m hoping to be clear of Pramipexole by then.
So sorry to hear how negligently you have been treated. 1.5mg Pramipexole is 3 times the max dose. You must be climbing the walls!Gabapentin is a complete waste of time until 3 or 4 weeks before you drop the last dose of Pramipexole.
Follow SueJohnson advice, find a knowledgeable doctor asap and consider legal action for the bad treatment you have received so far.
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