I have a love/hate relationship with my RLS! When I first began to get symptoms in 1990 , I consulted my GP who had to look up the condition! He checked my iron levels… found I was anaemic… further investigations eventually revealed otherwise symptomless bowel cancer. Surgery alone was needed and that was over 30 yrs ago. I consider RLS saved my life!
However, having been prescribed Pramipexole 12 years ago, it is clear I am augmenting and have just embarked on a slow phased withdrawal. Thank you for all the invaluable advice.
I have been taking 1x slow release 0.52mg pramipexole and 4x .088mg. in divided doses. I have heard the advice to switch from slow release 0.52mg pramipexole to .088mg tabs. My question is, has anyone any experience or advice on how and when I should take these tabs? I have found that taking a high dose, initially makes my symptoms worse. Should I try to emulate the slow release by spreading them out, or is it just a case of trial and error? Thanks.
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Tenorman
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Welcome to the forum. You will find lots of help, support and understanding here.
Wow - that is great that they discovered the cancer so you could be treated.
You have probably seen my advice but in case you haven't I will give it to you.
Yes switch to the regular pramipexole since the slow release ones can't be cut. Take all of your pramipexole shortly before your symptoms begin. If you have symptoms all day and all night you will want to take them in divided doses. You will need to experiment.
You are on twice the maximum amount so you have a long journey ahead of you and it won't be fun, but you can do it and will be glad in the end that you did.
To come off pramipexole reduce by half of a .088 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 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 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] 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 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 or magnesium-rich foods, 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 nor calcium-rich foods 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)."
You say you were anemic. Have you had your ferritin tested? If so, what was it? This is the first thing your doctor should have done. 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 in a multivitamin 48 hours before the test, avoid 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.
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, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potasium. 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.
If your doctor will not cooperate with your getting off pramipexole we may be able to give you the name of a knowledgeable doctor if you tell us where you live in the UK.
My consultant arranged for an iron infusion a year ago with good results and my serum ferritin level is currently 230. I am in a fairly good phase at the moment which is why I have embarked on this journey now.
I have taken your recommendation and been reducing by half .088mg/fortnight and am down to .52mg slow release at 4pm and 1.5x 0.88mg at 6pm. I am taking 2x over the counter, paracetemol (500mg) & codeine (12.8mg) tabs nightly and am coping ok.
The only other medication is a daily statin - Atorvastin 20mg
I'm due to see the Consultant Neurologist again,( Freeman Hosp, Newcastle-upne-Tyne) in early Feb but can contact her before if necessary. I suspect by then I will be needing something more to help me!
Kirsty Anderson by any chance?You may need to see someone else as forum members have reported she will not prescribe pregabalin or opioids. I don't know if she feels the same about gabapentin.
But your options for replacement meds are limited if your consultant is Kirsty Anderson.
Yes, it is Kirsty Anderson. That’s disappointing to hear. Although she had no problem arranging for the iron infusion and encouraged me in embarking on dose reduction of Pramipexole. I’ll see where I’ve got to and what she says when I see her again in February.
Glad to hear she's arranged iron infusion and is aware of the need to get off Pramipexole.Just be wary of the poor reviews and do NOT let her suggest another dopamine agonist like Ropinirole or Rotigitone (Neupro patch).
The options for replacement meds after augmentation are pregabalin or gabapentin and if they don't work after around 3 months, low dose opioids.
I assume you meant Atorvastatin? Statins can make RLS worse.
Nexlizet (Nustendi) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
If you end up taking gabapentin you should be closely monitored as it can raise the bad LDL and lower the good HDL. Pregabalin does not increase it so that is a better choice.
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