Reaching out to your knowledge and lived experience once again.
My RLS has been banished since taking Pregabalin- I take 150mg at night and usually get 5-6 hours of uninterrupted sleep.
My referral to Leicester Sleep Clinic resulted in being told to take a multivitamin with iron for the rest of my life and have regular blood tests. No infusion offered despite bringing Ayo Algorithm with me as evidence.
I have noticed rapid weight gain even on this low dosage. Checked in with GP who said “yes, that’s to be expected just do your best to eat well”.
So, community, what next? Lower the dose,? Come off it altogether? I cannot cope with weight gain as I’m already heavy and confidence is rock bottom but neither do I want to go back to pain, sleepless nights and exhaustion. Has someone been where I am?
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careerSquirrel
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Increased appetite and weight gain are quite common side effects of pregabalin.The Mayo Clinic Algorithm does suggest low dose opioids if side effects of pregabalin are intolerable ( weight gain is hinted at).
If the weight gain is tipping you into unhealthy levels, you do have a case for switching to a long half life, low dose opioid.
Your GP may not be willing to prescribe an opioid though, so perhaps you can afford to see a good neurologist privately? The NHS waiting list for good neurologists is very long. A neurologist might switch you to methadone or Buprenorphine.
Or discuss the possibility of switching to Targinact (Oxycontin with naloxone) with your GP. Targinact is licensed for RLS in the UK. It is taken every 12 hours, but many people seem to suffer mini opioid withdrawals on that dose. Oxycontin actually lasts around 4 or 5 hours, so a better dosing schedule is 5mg every 4 or 6 hours. The average dose is around 30mg. I attach a useful article to show your GP.
If you do switch, reduce the pregabalin slowly to avoid withdrawals. 25mg a week or every few days and monitor effect.
So I am suggesting that your doctor might now switch you to an opioid. Buprenorphine and methadone are the most effective for RLS, because they have a long half life.
You might want to try switching to 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. You can switch directly. Multiply the pregabalin amount by 6 to get the correct dose which in your case would be 900 mg. Since you need more than 600 mg take the extra 300 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. If you later increase your dose as you might want to since you are still not getting a full nights sleep, take up to 600 mg 4 hours before bedtime and if you need more than 1200 mg, take the extra 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.
If that doesn't work, then you will need a low dose opioid. I would suggest buprenorphine since it lasts 24 hours.
The multivitamin won't have enough iron in it to raise your ferritin. I may have already told you this, but in case I didn't: 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. 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. If you want to take it every night be sure it is at the same time so it is 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours. If you take magnesium, calcium 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 tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take 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.
I took Pregablin several years ago and was horrified by the speed and amount of weight gain. After being on various other drugs over the past few years, I am now on Gabapentine. I have definitely felt hungrier and started to put on weight. I now have to be careful but it’s perfectly manageable, unlike the Pregablin.
Thank you. It’s almost just exploded and I cannot believe the devastating results. I knew this was a common side effect but I also knew that it didn’t affect everyone. I am already heavier than I want to be but the positive effect on my RLS has been life changing.
As you will see from earlier posts, GP has said that Gabapentin is much the same but Sue has said not necessarily.
I’m only on a low dosage of 150mg of Pregabalin but boy can you see the effects already
I found it horrifying. Every time I got on the scales, I seemed to be a kilo heavier. I don’t have a big appetite and couldn’t understand it. I’ve never experienced that before.
I too take pregabalin each evening for RLS and usually manage about 6 hours sleep. But I have been dieting with Slimming World for a year and have managed to lose 5st. while still taking pregabalin.
Can I ask, when you stopped Pregabalin did you lose any of the weight? I am coming off it at the moment and although down to a really low dose there's no sign of the weight shifting.
I was on 250mg but have got down to only 25mg daily which I will now stop altogether. At that dose I would have thought I could have lost weight if I was going to, but no. Very depressing!
It can be but as I mentioned many people find the side effects that affect them on one don't affect them on the other. Nothing ventured, nothing gained as you will find out fairly quickly since it mainly results from an increase in appetite.
If you are having problems controling your weight that's probably because you're eating too much carbohydrae especially refined carbohydrates like flour and refined sugar. Avoiding refined carbohydrates will also reduce your systemic inflammation which is one caue of RLS.
I’m actually really careful with my diet but I think Pregabalin is well known for weight gain. I am not noticing an increased appetite but would say I don’t necessarily feel full or satisfied after eating and I seem swollen
Weight gain is not about how much you eat as what you eat. The fat on your body is made from triglycerides which are made in your liver from excess glygogen. Glycogen is the storage method the body uses for excess blood sugar and blood sugar in increased not only by eating sugar but also eating starch and the more processed the starch the quicker it is metabolised causing a higher spike in blood sugar.
I think under normal circumstances these rules may apply but evidence out there suggesting that lyrica can affect metabolism and hormone responses so perhaps regular dietary advice doesn’t apply here but thank you
Cortisol is a glucacortinoid therefore it can raise blood sugar. Ashwaganda can regulate cortisol and L-serine can bring down blood sugar and promote sleep.
I’ve seen both of those supplements- thank you it’s worth a try as I attempt to come off Pregabalin. I will read more about Ketogenics - we are saturated with low fat this low fat that. I know that ensuring you keep in good health is bound to have an impact. Did you also struggle with RLS? Did you ever try medication. I appreciate its really good for some people and has minimal side effects
Yes I suffered from RLS but tackled it with diet to resolve the causes before reaching out for meds to supress the symptoms. I still get it occasionaly when I've unwittingly eaten something that I shouldn't have.
I was on pregabalin and gained three stones. You can’t just stop it either as it’s addictive. It took me about ten weeks with as regime set out by the go. I can’t pretend it was easy. I’m having real trouble losing the weight. But I’d gone from size 8 to size fourteen and was heading further. The RLS is worse but getting better. My neuropathic pain is bad but I’d rather have that than the constant weight gain. My friend was on it and stopped it as she gained a stone in a month. Sorry to bring you this news.I’m guessing gabapentin is the same, I’m not trying it.
Thank you so much for your comments. I must admit that the relief from RLS and the sleep was intoxicating at first but now that I’m noticeably heavier after 6 weeks of use is so demoralising.
I don’t know about you but I’m not particularly eating any more than I used to but I am struggling and the weight gain will make my health plummet both mentally and physically
I got up to 600z started red from 150 s day. When I stopped completely it sent me into a 3 moth bipolar nightmare even though I had been controlled for 13 years. I then went back on found it was very addictive ( it’s used on the streets) I wouldn’t go near the stuff again sorry.
Don’t apologise at all. I’m currently taking 150mg at night which seems to give me respite from RLS and sleep. Even on this low dose, I’m adding weight. I know this works for some people but it can also be a difficult one for others.
hello my experience of pregabalin is that it does cause weight gain even when you eat exactly the same as you did previously - I was taking 300 mg a day and I log all my food so could tell that my intake had not changed.
I am now on 100 mg pregabalin plus buprenorphine. Unfortunately I am still considerably overweight from my time on the higher dose although it is now possible to chip away at the weight. I think you can swap straight over to garbapentin with the right guidance - coming off of pregabalin is difficult and leads to all kinds of withdrawal symptoms so a swap over might be better.
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