First of all thanks for letting me join this group.Ive had RLS since 2012, doctor put me straight on to Pramipixole 0.088mg, this dosage has slowly increased over the years to the point where I was on 0.35mg and still the condition has gotten worse.
Last week my doctor finally decided to try Pregabalin 75mg twice a day while at the same time decreasing the dosage of Pramipixole over the next 4 weeks until I can stop taking them alltogether.
This first week has been torture already and reading some of the threads on here I presume Im gonna be in hell for the next few weeks?
Any advice on this matter would be greatly appreciated.
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Lubopepper
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Welcome to the forum. You will find lots of help, support and understanding here.
Your doctor is having you reduce too fast which is why you are suffering. Here is the correct way:
Since you are suffering now I suggest you go back up to the .35 dose.
Then check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .125 tablet or .088 tablet (ask for a prescription of these if needed) 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 them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 75 mg pregabalin. However there is no point in starting it now as it won't help. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 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.
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 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 on the best iron tablets to take and how to take it.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thanks so much for all this information.The 0.35 arent slow release, doc has given me 0.180mg for a week then 0.088mg for a week, then finally 0.088mg every other day for the final week.
Ive got some cannabis to help get me through this as the couple of times Ive taken it recently were the best nights sleep Id had in years.
Welcome.Join RLS-UK and spend a few hours reading the website.
There is a withdrawal schedule and an iron therapy page under Useful Resources. Print them off and educate your GP as he won't have had ANY training on RLS or how dangerous dopamine agonists are. He will not realise how hellish withdrawal is.
Go slowly while ensuring your serum ferritin is above 200ųg. Arrange 2 weeks off work/social engagements for when you drop the last dose.
Pregabalin is a waste of time just now. It won't stop the severe withdrawals.
Pregabalin should be taken at NIGHT only for RLS. It starts to help about 4 weeks after the last dose or Pramipexole.
So don't take the Pregabalin yet. Take it 4 weeks before you plan to stop the last half Pramipexole pill.
Reduce by half a 0.088mg Pramipexole pill every 2 weeks. Ask for 30mg codeine or 50mg tramadol or 10mg oxycodone to take for 4 or 5 nights when you drop the Pramipexole. Opioids really help to settle the brutal withdrawal and you will NOT become addicted ( Dr Winkelman's opioid study for RLS proves this).
Also make sure you're not on meds that cause or worsen RLS. They're listed on RLS-UK website under Treatments- scroll down to medications to avoid.
Learn all you can. UK GPs and neurologists aren't taught RLS at any stage. There are only around 4 or 5 neurologists who are up to date.
Wow! Dear Lubopepper, I'm in the same situation but I haven't contacted my GP yet as I only here last night that Pramipexole is absolutely no good for RLS.Merry Christmas from Hollygreen
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