Can anyone suggest how to manage weight gain on pregabalin ?
I do not eat any more than I normally do , I feel so bloated and uncomfortable!
On 225 mg pregab at night , still tapering off pramipexole. Taking 1 0.008 .
Rls is less although not completely under control.
so fed up .
Waiting on neurologist appointment ! In UK so could be 12 months !!!!
I know I mentioned this before but you might want to try switching to gabapentin. Pregabalin is more likely to cause weight gain than gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose, which on your case would be 1350 mg. Since it only comes in 100 mg, you can either take 1300 or 1400.Since you need more than 600 mg take 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. And since you need more than 1200 mg, take the extra 100 or 200 mg 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
I wish I could answer positively. It is a known side effect.Management of RLS is well within the capacity of GPs. Even the Association of British Neurologists state that. The problem is that they've never been taught the basics and don't learn during GP training courses.
Once you're off Pramipexole, the pregabalin should cover your RLS.
If not, just ensure you follow the standard advice on here and raise serum ferritin above 200, review and safely replace all trigger meds (sedating anti histamines, anti depressants, statins, beta blockers, PPI meds).
If your RLS is still severe, then your GP can prescribe a low dose, long half life opioid ( Buprenorphine). The NICE guidance mentions opioids for refractory RLS but some health areas in the UK refuse Buprenorphine unless a neurologist prescribes it.
Hi Joolsg, I am currently on Ropinirole with signs of augmentation. I have tried Pregabalin without success. I am hoping that my Doctor can prescribe Buprenorphine but he says there is no mention of it in the Nice guidelines. I have looked and can't find any mention of it either. Could you let me know where it is mentioned as help for refractory RLS? I would be very grateful, many thanks in advance.
NICE guidance is outdated. It only mentions codeine. Strangely, it doesn't mention Targinact which was mentioned in this 2015 NICE study.The ONLY drugs licensed for RLS in the UK are dopamine agonists (avoid!!!) and Targinact, which is Oxycontin and Naloxone. NICE produced a study on Oxycontin for RLS in 2015.
nice.org.uk/advice/esnm67/c...
Pregabalin isn't licensed for RLS, but NICE guidance places it as joint first line treatment.
Pregabalin didn't work for you because you are on Ropinirole. Severe augmentation overrides Pregabalin. You have to be completely off Ropinirole for at least 4 weeks before Pregabalin helps.
Buprenorphine is a long half life opioid and will really help to reduce the horrors of withdrawal from Ropinirole, BUT your GP may refuse to prescribe until you've tried Pregabalin 150-200mg when off Ropinirole.
Buprenorphine is NOT licensed in the UK for RLS and isn't mentioned in NICE guidance. I persuaded my GP to prescribe it by showing her the Mayo Algorithm, the Massachussetts Opioid Study and showing her my IRLSS scale chart. Luckily she's young and was willing to read the research.
In many areas, Buprenorphine is 'red listed' and GPs are not allowed to prescribe. Here are studies to help persuade your GP to give you a trial.
researchgate.net/publicatio...
neurologyadvisor.com/report...
Hi Jools, Thank you so much for this detailed and useful reply. I tried Pregabalin before Ropinirol and it didn't work for me, just made me feel 'out of it' and I really didn't like that feeling. My legs persisted in keeping me awake night after night. I then tried Ropinirol and it worked like magic. It still does most of the time but I am very aware of potential augmentation. I take 0.75mg a day and it mostly works all day with the occasional breakthrough if I forget to take it in time. So, given that the Pregabalin doesn't work for me, I am hoping to find a way of getting my doctor to let me try Buprenorphine or Methadone. Not holding out much hope but thank you so much for the studies you have attached, I'll take those when I next go to see him. I do want to get off Ropinirol but I don't want to stop taking them whilst they are working for me and there is no other option. Life was terrible before and I don't want to go back to that. I feel trapped and frustrated at not to be able to get much help. Doctors in general seem to know nothing about restless legs. Thank you once more, very much appreciated.
Faith, were you warned about augmentation and Impulse Control Disorder by your GP before starting Ropinirole. If not, please tell them that there have now been hundreds of leg cases in the UK against doctors who failed to warn their patients. It may make them reconsider before they prescribe dopamine agonists.Pregabalin takes at least 3 to 4 weeks at average dose ( 150mg) to help RLS. And it should only be taken at night, not during the day. The side effects you describe lessen after the first month, but many people stop taking it before the side effects settle.
You should also ensure you get fasting, morning full iron panel blood tests.
Iron infusions should be first line treatment. Especially for women.
Raising serum ferritin above 200 by iron infusions resolves the majority of cases. There are SO many research papers on this. I personally know 3 people who are med free after an iron infusion.
The one caveat is Ropinirole. Patients on dopamine agonists do not respond as well to iron infusions. The experts believe dopamine agonists cause permanentdamage to dopamine receptors and we need fully functioning dopamine receptors to take up iron in the brain.
So do demand blood iron tests as per RLS-UK website.
You can arrange a private iron infusion from the Iron Clinic in Harley Street. Just send the blood results. It costs around £800. The NHS is struggling so badly, an infusion may take years. And many haematology departments are unaware of the links between RLS and low brain iron. If you live near St George's in Tooting, the Royal Cornwall in Truro, or Salford, you are more likely to get an infusion on the NHS.
Buprenorphine can be used to get patients off Ropinirole, and hopefully your GP will review the evidence and take an informed decision.
Dopamine Agonists will be banned for RLS within the next 10 years. The evidence is piling up against them.
Weight gain is more a problem of what you eat rather than how much you eat. The triglycerides in your blood which are the building blocks of body fat are made in your liver from excess glycogen which the body makes from excess blood sugar which comes from the carbohydrates that you eat. So the way to lose wight is to cut out the carbohydrates especially those from wheat i.e bread, cakes and biscuits. Also cut out fruit juices which are all high in sugar. It's ok to eat more fat, esp. that from meat, real butter and olive oil as excesses of that will pass through without causing weight gain. This is known as the LCHF diet.
I follow a gluten free diet for health reasons and follow a clean eating plan . I eat clean protein with every meal . Do not eat any cakes , bread pastries etc and no sugar . That’s why I am so annoyed at gaining weight on pregabalin ?
I keep a food diary every day and I am very active. I feel the gain is more fluid than anything else . Im hoping to switch to Gabapentin to see if this helps . I cook from scratch with nothing processed.
Are you still cooking with refined oils? Those can cause systemic inflammation which retains fluid and can cause RLS
No I use olive oil or coconut oil if any
Also have osteoarthritis do follow anti inflammatory diet ! Help
I also gained weight on Pregabalin and felt horrible side effects. But once I was finished with tapering off Pramipexole I switched to Gabapentin and felt WAY less brain fog, less bloated, less cravings, it seems to agree with me. I lost 7 pounds in the weeks of Pramipexole leaving my body. Keep up your efforts of eating clean! 👌
thank you
Wow! You are taking over 10 mg of pramipexole? That's an extraordinarily high amount. Usually not more than 0.5 mg are prescribed for RLS. Good luck getting off that dangerous neurotoxin. I have been micro tapering for a couple of years.
I read it as one 0.088 mg of pramipexole, the lowest dose.
That is correct , poor typing on my part !
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