Looking to come of pramipexole, i'm seeking advice before i speak to my doctor. I see that i need to come of this very slowly, currently on 0.52mg, believe that i am getting bad augmentation, and not sure on which of the following is related. What reducing dosage is recommended.
* Constantly tired
* Joint Aches
* bad back and shoulders
* Similar feeling in arms
* Headaches in morning
* cramps in legs / PAD type feeling.
* Quite bad memory loss
* Forget why im in the room or what i am doing.
* Confusion
* Lack of sleep, some nights an hour or two, other nights 5 or so hours.
I was on gabapentin 300mg twice a day then went on to pregablin, both of which made tiredness, confusion, memory loss etc worse, so i have gone back on gabapentin 100mg, which when i take still make me worse, this is for joint pain and remained on pramipexole. it there a link between the two making things worse. from what i can understand is it pramipexole,
So with this, can i slowly come of pramipexole and slowly increase gabapentin at same time? or should i go down another route ? not sure if gabapentin will still cause the tiredness after.
I am also on Allopurinol (Gout), Vitamin D (have to take to keep levels up), Multi Vitamins, Atorvastatin (cholesterol) and Omeprazole (for acid reflux)
I have just asked for my Serum Ferritin levels to be checked, last i could find was May 22 which was 129 ng/mL lowest was in 2012 which is 40 ug/L
What should i do ?
Thanks
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Deathy
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Welcome to the forum. You will find lots of help, support and understanding here.
Yes you should come off the pramipexole. You are on the maximum and are suffering from augmentation. All of your side effects could be caused by it or some of the other drugs you are on.
First off 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 .088 [.125] 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. (Pregabalin is more expensive than gabapentin in the US.) 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.)] Normally you would start it 3 weeks before you are off pramipexole but you are taking it for joint pain. It won't be fully effective for RLS 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)."
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, oestrogen (estrogen) including HRT, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Statins 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 take gabapentin you should be closely monitored as it can raise the bad LDL and lower the good HDL. Pregabalin does not increase it so you might want to switch.
Omeprazole is a proton pump inhibitor and RLS-UK says most proton pump inhibitors make RLS worse. I recommend Gaviscon Advance. Make sure it is the Advance one.
Thanks for such a fast reply, hope you and your family are having a good xmas.
Sorry about the profile, im dyslexic and got bombarded with a load of popups.
I'm Male from UK.
These are prolonged release, so assume extended release. so guess i need to switch to the other ones, does this have to be taken multiple times a day ?
When you say a low dose opiod, Katom is banned in uk and cannabis while i miss the good old days im not sure doctor would prescribe or work be happy about this. in the UK, Oxycodone is licensed for RLS, but codeine, tramadol and buprenorphine can be prescribed off license. are any of these any good ?
I will look into the other medications to see what can be changed.
Thanks for you help, a lot to take away. i have also found a load of info on tests that havent been checked and ruled out, i.e renal impairment & thyroid which i know my TSH is on the low side but above the low limit.
If you think of anything else please let me know. is there any good sites to look at, most seem very basic and not many are upto date that i could see.
Some say over 200 or 300. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you end up taking thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
If you end up taking thyroid medicine reply back as I have advice on that too.
Yes since they are prolonged release, switch to the other ones. You do not need to take them multiple times a day.
Yes kratom is banned but you can get it from kraatje.eu/ or kratom.co.uk. They deliver it discretely and many on the forum do it this way.
For cannabis this is what Joolsg says "You have to use an online private pharmacy. I use curaleaf . You fill out a form, they contact your surgery for medical records. You book a zoom tele appointment, pay £50 & they then send a link to a pharmacy who you pay online. The cannabis is then couriered within a week". Vaping will give immediate results.
On the Gaviscon Advance take it 30 minutes after eating and 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin or antihistamines.
I am now at .125 but have so half a pill instead of 3 . It's been quite manageable up to now . My body heat concern is self inflicted weight gain. ( Compfort food. This site has been a wealth of information and support . Good luck .there is hope.
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