So up date of my journey trying to come off roprinirole. I am now on a good day taking 2 x 0.5 mg with an extra 0.5 mg if going on a journey or appointment. I also take 100mg of pregabalin in morning and 200 mg at night. However the side effects of pregabalin cause me concern. So far in about 6 months i have put on 1.5 stones. I really can’t afford this as overweight already. I get terrible compulsive binge eating attacks. Does this or will this subside. GP doesnt think so.
So I’m thinking sod it stop all this pregabalin and stay on roprinirole?
Gp has now mentioned possibly trying Duloxetine as advised by neurologist? Does anyone know anything or had experience of this drug. I’m so tired and sedated all the time. If I sit down without someone there I am asleep immediately. I can’t continue like this
Thanks in advance to all you fellow sufferers of this bloody awful, life controlling disease
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SilverEvie
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Duloxetine is an SNRI antidepressant and for many people causes a worsening of the RLS. I had suggested before trying switching to gabapentin as the side effects that bother them on one on pregabalin do not affect them on the other. Multiply the pregabalin by 6 to get the correct gabapentin dose. You can switch directly. Nothing ventured, nothing gained.
I wish GPs and neurologists in the UK would educate themselves about RLS. Any meds that affect serotonin worsen RLS for the overwhelming majority of RLS patients. Please print off the Mayo algorithm, underline the part about anti depressants worsening RLS and ask them to reconsider/learn about the disease.Why would they suggest an anti depressant anyway? RLS is a neurological disease and unless you have severe low mood they shouldn't be suggesting anti depressants.
Pregabalin and gabapentin can cause an increase in appetite and water retention. If you find it difficult to monitor your food intake, perhaps low dose opioids are a better option.
Show your GP the Mayo algorithm and the Massachussetts opioid study which shows low dose opioids are safe, effective and do not lead to addiction (unless there's a history of abuse) or tolerance.
Definitely get off Ropinirole as your RLS will improve dramatically once you're through withdrawal.
I didn't realize gabapentin caused weight gain and fluid retention. I have been on it for 4 months and had no weight gain yet but I am doing no sugar and no processed foods so maybe that is why. Thanks for the heads up, I will be careful with food choices
It doesn't cause weight gain in everyone only in some. I only gained a couple of pounds. It can cause edema usually at higher doses like 1200 or more. I have it but it is not a problem. And I eat lots of sugar and some processed foods.
They cause an increase in appetite for some people who don't notice they are eating more than usual. However, not everyone will experience side effects.
Pregabalin caused me to gain a lot of weight very fast, mainly in the feet and calves. I swelled up like a balloon. I finally couldn't stand it any longer even though it was helping my RLS. Once I stopped taking the Pregabalin, the swelling went down. So you are not alone. I finally had to switch to opioids in the form of buprenorphine, and that has really helped me.
gee i wish i could sleep, this is my third nite of sitting here and i dont know why. ive taken my pramipexole 0.125 mg which causes my legs and arms to move by themselves so i have to wait an hour or so for that to stop. ive taken two osteo for joint pain .im waiting now for results of blood tests to see if thyroid pills are correct dose. but my daughter has been told she has the celiac gene and quite possibly be allergic to gluten and now we have to be tested because the gene comes from some where and i have all of the same symptons if i eat gluten even could be the cause of my RLS.i did just take a 75mg of pregabalin i have managed to cut down on them but my feet are now very hot my joints screaming my fingers hurt so much. how can i sleep ..im sorry to ramble on but nobody listens
If you have celiac disease than eating gluten can increase the symptoms of RLS. Have you had your ferritin tested? Increasing your ferritin to 100 or more helps celiac disease and helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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 advice. Why do you want to reduce the pregabalin?
Hi i saw my doc today for results of blood tests thyroid results are perfect, iron good, and b12 is ok she says all good then i went for blood test for celiac and helicobacter..and i told her i had stopped taking lyrica and was going to stop taking sifrol i asked her for a script for tamazepam, she gave me 25 x but she said if you are cutting out sifrol take some iron tablets. my feet at this very moment are burning i think that must be because i didnt take a lyrica tonite i am not anymore they werent too hot all day
If you are going to take iron, take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day, 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. Ferrous sulfate is cheaper at least in the US and for most people does not cause constipation but iron biglycinate is much less likely to. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine don't take it within 4 hours.
hi i dont like lyrica it makes my feet hot and numb with pins and needles and with swollen feet and ankles also its leached thru kidneys and should be pescribed with caution to old people with kidney problems i leak protein in my urine and sometimes blood i am trying to leave these body / mind altering pills behind.altering my diet and going back to where i didnt have restless legs or to when it was occasionaly and a paracetomol would ease it, every pill they pescribe to cure a thing causes another thing to occur then i need another pill .my doc did not tell me my iron just said thyroid was good and sugar was extremely good thankyou for your help i will try the iron the way you put it xx
It sounds like you are suffering augmentation from the pramipexole. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. If this fits you, post back here and we can give you some advice
this does fit me and here i am again. i tried to take codeine instead of pramipexole 0.125 i didnt even get thru one nite i also have pregabalin but have been warned its not advisable to take lyrica and codeine
To come off pramipexole, try reducing by a quarter of a pill every 2 weeks or so. You will have increased symptoms. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer, Take the codeine to help. But in the long run, you will be glad you came off it. On the lyrica, and codeine the reason the doctor said that is both can cause respiratory depression (slow, shallow, and ineffective breathing). However many people do take them together. And the Mayo Clinic Updated Algorithm on RLS which is basically the bible on treating RLS advised both starting pregabalin before one is off pramipexole and using a low dose opioid as one nears the end of taking pramipexole, so they would both be taken together. They also say The drugs (pregabalin) have been reported to occasionally cause respiratory depression when they are used in patients with underlying pulmonary disease or in combination with opioids. Note the word occasionally.
hi from my docs notes i had a complete iron study in 2013 apparently satisfactory iron 8 umol/L 5-30 transferrin35 umol/L 25-40 saturation11% 10-45 ferritin131ug/L 30-500 but since i dont understand these readings and its 10 years ago its not much use x
Your ferritin was OK, but your saturation was low. and your need your saturation to be more than 20% for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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 your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
thank you so much i will be having more test i am just waiting to see a doc with the results from my last blood tests but we have a long weekend in wa so no doctors thankyou again xx
I assume you are going back on gabapentin. Gabapentin is used for nerve pain. You can start before you are off the Duloxetine. And gabapentin (or pregabalin) is the first line treatment for RLS which I assume you have or you wouldn't have posted in this forum. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them. 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 at Https://mayoclinicproceedings.org/a... Meanwhile have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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 advice.
I'm so sorry you are having all these problems with your RLS treatment. I can only speak from my own experience with Pregabalin, which so far has been good. My doctor started me on 75 mg, to increase to 300mg if I needed to. Fortunately I was able to get my RLS under control at a dosage of Pregablin 150 mg. I have been in that dosage for a year and a half without having to increase.
Two things I wonder about. Did your doctor start you on 300mg daily because that is a standard dose, or did you start on a lower dosage and titrate up depending on your own symptoms? How did you arrive at your current regime? Second, why the divided dose? If you are tired and feel sedated all the time, why can't you take the total dose in the evening hours, when sedated is a good thing and would help you sleep? There might be very good answers to these questions, but maybe not
I have been slowly gaining weight over the last year and a half, but I started after my second surgery at a very low weight for me, and I assumed that the weight gain was a lack of self-control on my part, or my body trying to get back to some kind of baseline. Your post has given me something to wonder about, in terms of side effects. I would still rather sleep and be fat than live in the nightmare that is RLS and not sleep, but weight gain is such a distressing side effect. Best of luck to you!1
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