Gabapentin or Pregabalin?

[HelenJS]

I have been on Gabapentin (300mg x 4 per day), with one taken at 4pm and the other 3 taken at 9pm. This is enough to get me through the night usually without any problems with RLS. My daytimes are pretty much problem free now and I don’t need any Gabapentin until I take the 4pm one. I occasionally get a small attack maybe around 6 pm but this is usually if I haven’t been able to take my 4pm dose on time. But on quite a few occasions I’ve been able to go until 8pm without any medication, and I’m taking my 9pm one at 9pm anyway so that can be enough, but this also depends on how active I am in the evening. For instance, I wouldn’t be able to skip the 4pm dose if I was sitting watching tv all evening until my 9pm dose. I never skip the 4pm dose intentionally. My problem is that despite the Gabapentin giving me my life back (I can drive, sit through staff meetings, be a passenger in a car, go for meals etc without problems now), I can’t lose weight. I put weight on before I started taking Gabapentin ( I was on Ropinirole for a while, augmented badly on it, then Neupro (Rotigotine) patch which worked for years then ‘stopped’ working, tried Pramipexole but was really scared about augmenting again though I didn’t but the worry was enough, so tried Gabapentin. Which as I say is great but I wonder if it’s stopping me losing the weight I put on previously. I’m talking around a stone (14lbs) at least. I am so unhappy with my weight and I know this isn’t a weight issue forum, but I just wondered if anyone had a similar experience and if it could be the Gabapentin preventing (not causing) the weight issue. A few mornings ago I walked for 2 miles, had a healthy lunch and dinner and pottered around in the garden for the rest of the day, weighed myself the next day with high hopes, and almost cried when I had actually gained another 2 lbs…. I have been trying to lose this weight for years now, it’s a struggle mentally as well as physically. I am wondering if there would be any benefit in changing from Gabapentin to Pregabalin, or would it not make any difference? The issue is that the Gabapentin works so well for me, it’s so frustrating that I even am even having to think about changing it for something else. I hate the thought of not ever shifting this weight, but I also need to keep my RLS controlled as I just can not live the torturous life I used to live before I found a medication that worked. I’m also reading a fair bit about Morphine on this forum, what experience do people have with this, and exactly how easy/difficult/impossible is it to get a prescription for this in UK? Thanks for any help.

[SueJohnson]

Pregabalin is more likely to cause weight gain so that is probably not a good idea.

Gabapentin won't prevent you from losing weight if you are doing all the right things to lose weight.

You are taking your evening dose of gabapentin wrong though. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. Since 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 eventually need more than 1200 mg, take the extra 6 hours before bedtime.

You can continue with your 300 mg at 4 pm when needed.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

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, don't eat a heavy meat meal the night before and fast after midnight. 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 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.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute

[HelenJS in reply to SueJohnson]

Hi Sue,

Thanks for your reply. I did have my Ferritin levels taken and I was told they are ‘ok’. I know that ‘ok’ levels for RLS are different to normal ‘ok’ levels so I asked for iron tablets anyway, which I got. But they didn’t make any difference. I also tried Magnesium Citrate supplements (not at the same time as taking any Gabapentin) and they didn’t make any difference (not to the RLS anyway). Ive tried the compression socks ( I had some after I had a knee procedure done a few months ago and I was literally dreading being immobile while I recovered but it was relatively RLS free and I can only think it was due to the compression socks I was given at the time), but when I recently tried them during a rare troublesome night the didn’t make much difference). I hear what you’re saying about the timing of my evening dose, so I think I’ll try taking 2x 300mg at 5pm and 2x 300mg at 8pm. I may try to persevere with the weight loss (its been a struggle for a few years already) and stay on Gabapentin because as I say it does a good job for me, but I may also ask my doctor about Methadone as I’m reading good things on here about it. At he same time I must admit what you say about Gabapentin shouldn’t stop me losing weight is reassuring.

[SueJohnson in reply to HelenJS]

Do ask what your ferritin is.

You say the iron tablets didn't help but you may not have taken the right ones or in the right way.

If your ferritin is above 60 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. Also take Lactobacillus plantarum 299v as it also 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 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. 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.

And if your ferritin is below 60 take twice the amount of iron.

[HelenJS in reply to SueJohnson]

Thanks again, you are literally a mine of information, I didn’t know about quite a few of the things you’ve mentioned.

[Joolsg]

I agree with SueJohnson. As Dr Winkelman says, if you take more than 600mg in one dose, at the same time, you may as well flush the extra above 600 down the toilet.So, you may be able to take a reduced dose. Reduce slowly by 100mg every 3 nights and then try 300mg at 8 pm and 600mg at 10pm. I'll bet it covers your RLS and the lower dose might even help reduce weight gain. You can play around with timings as long as you allow 2 hours between doses.

[HelenJS in reply to Joolsg]

Thanks Joolsg, this is something I will try, though I’ll have to ask my doctor for a short term course of 100mg capsules as well as my usual 300mg capsules to do this, but I don’t see why she would say no.

[Jumpey]

I take morphine successfully for RLS. But I can't comment generally about how easy it is to obtain.Different practices have different attitudes.

[Rangers52]

I can relate to what you're saying I was on pregabalin and it eliminated my rls but the weight gain was horrendous I'm now managing to lose weight but really struggling with rls at night, atm I'm taking 60 mg of iron which I've been taking for 1 wk and I'm hoping eventually this will help but who knows.I'm also taking zopiclone every other night just to get some sleep.

I've no idea how much longer my gp will keep giving me zopiclone as they only prescribe me 7 tablets at a time for fear of addiction 😫

[Rameau in reply to Rangers52]

Prescribing only 7 tablets each time seems ridiculous. I have been taking Zopiclone for a few years (every few nights) and have had no trouble with prescriptions. My GP might argue I have become dependent (not addicted), but so what. Getting enough sleep is the issue. Once I have worked out the most effective dose of Gabapentin (for me seems to be a minimum of 800mg), I hope to use Zopiclone less, but probably never eliminate it altogether.

On the subject of weight gain: as we get older it becomes increasingly difficult to lose weight. Personally I have become more careful about what I eat - cutting out a lot of sweet things and limiting lunch to a sandwich - but could still lose a few pounds.

[Rangers52 in reply to Rameau]

Yeah irs definitely tougher now im older but I've been controlling calories and going to the gym so it's coming off slowly but surely, I actually don't care if I become dependent on zopiclone but my doctor says the longer I take it the less effective it will be.

[Rameau in reply to Rangers52]

In my experience Zopiclone only becomes less effective if you take it every night. It works for me if taken every two/three nights. I've been prescribe Zopiclone regularly for at least five years.

[marsha2306]

I recently switched to Pregablin and gained 4 pounds in 3 days. I've never gained weight on gabapentin.

[HelenJS in reply to marsha2306]

That’s enough for me then, I won’t be switching to Pregabalin, especially as Gabapentin works for me. Thanks.

[707twitcher]

I think most of us here that are using opioids struggle with a variety of side effects - nausea, brain fog, constipation, etc. I can understand your frustration with weight control, but if it helps any, I think we'd all switch places with you if we could... (The grass/side effects is always greener...)

[707twitcher]

have you looked at Shumba’s post today? A video that talks about Ozempic-type drugs helping Parkinson’s. If you want to be a Guinea pig, you could try Ozempic (assuming you can get a Rx). Possible double benefit if it helps RLS??

[SueJohnson in reply to 707twitcher]

The problem with those drugs are they are expensive although don't know about the UK and have to be taken for life because if you stop the weight comes right back.

[BarnGir1]

Hi, HelenJS. Regarding weight gain, I have been using GoLo for about 2 years. I lost 10 lbs and have kept it off by continuing to take 1 capsule 3 xs per day (immediately after each meal). I don't follow the prescribed diet but do try to follow a diet that reduces inflammation. It is affordable if I take it this way and not necessarily with all the other supplements they try to get you to purchase. I also take Seratame and Salt Wrap Mag R & R when I have a breakthrough. The gabapentin seems to be working much better the longer I take it. Thanks for sharing; I found your post helpful. Good luck. BarnGir1

[HelenJS in reply to BarnGir1]

Hi BarnGirl1, thanks for the comment. I haven’t heard of GoLo, I’m in the UK, is it available here. I will do the age-old thing and google it, many thanks for the info.

[Albertru]

I have been taking gabapentin for at least 5 years and have no problems with keeping my weight down. I just wish I could take one pill instead of the four gabapentins I take.

[SueJohnson in reply to Albertru]

You can if you switch to pregabalin. Divide the gabapentin mg by 6 to get the appropriate dose. You can switch directly. There is a slight possibility the pregabalin might cause weight gain but you can switch back if it does.