Advice on gabapentin please

[Cobobay]

Hi everyone, especially Sue, have just been put on gabapentin working way up to 300mg over next month, I am also still on ropinerole, of which I am now taking 0.25 twice during day and also 1mg in the evening. Since starting gabapentin my ankles are swelling up quite badly, I have also been told to watch my weight too, as these tablets increase weight gain. Should I stop them, I'm just completing my 1st week and due to increase dosage tomorrow. I have just managed to lose some of my weight which has helped me with my breathing ad I have copd, so don't want to put it back on again.

[SueJohnson]

First don't increase the gabapentin for at least 3 weeks as it takes that long to fully be effective. And I certainly wouldn't go up to 300 mg before you are off ropinirole. The most I would advise before you are off it for several weeks is 900 mg, since it won't be fully effective until you are off the ropinirole for several weeks. Yes swelling of ankles can be a side effect. I have it Drink lots of water. That might be counterintuitive but when your body is not hydrated enough, it holds onto the fluid it already has to make up for the lack of incoming water, thus contributing to swelling Do not take a diuretic to reduce the edema because they make RLS worse. Gabapentin can lead to weight gain for some but not most people. I only gained a couple of pounds. If you do find you are gaining weight you might try switching to pregabalin. Although they are basically the same drug except you don't 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. Divide the gabapentin amount by 6 to get the correct dose and you can switch directly without weaning off the gabapentin.

[Cobobay in reply to SueJohnson]

Thank you Sue although have to say I honestly don't understand all the dosage etc and that frustrates me when I'm trying to explain to the doctor, what I've been told, I also get told the US guidelines are different to the UK. Below is what I've been told to take and hopefully this will enable me to cut out my daily dose of ropinerole and just leave with the nighttime one and 300mg gabapentin. I am going to Jamaica beg of April and desperately want to get myself sorted for the 10.5 hour flight as I won't be able to cope otherwise, the time difference is also worrying me as to whether to change my times I take my meds. I am on a blood pressure tablet that I have mentioned before that also helps with my swelling ankles. Once again thank you so much

.

[SueJohnson in reply to Cobobay]

My bad, in my mind, I confused 300 gabapentin with 300 pregabalin when I said not to go up to 300 mg. Obviously going up to 300 gabapentin is OK. And the way your doctor stated is fine. 300 mg gabapentin is actually the usual starting dose.

[SueJohnson in reply to Cobobay]

On your flight. If you haven't already book your flight for early in the day and book an aisle seat so you can get up and walk around and preferably an emergency exit or bulkhead. Pack activities that serve as distractions. If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the flight attendant. You can join for $40 even if you don't live in the US and it is well worth it. RLS-UK also has a medical alert card available to members for things like flights. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot. As far as the time zone difference adjust when you take your medicine by one hour each day and reverse coming back.

[HilsK in reply to SueJohnson]

I have had problems with Pregabalin in as much that I had an anaphalactic reaction to it yet was stable on Gabapentin. The two drugs are related but NOT the same.

Gabapentin was used to allow me to reduce the dose of Pramipexole I was on as I was suffering from severe augmentation. However unfortunately, the side effects of Gabapentin such as edema and gastric issues were too great to continue.

It is not right to say don't take diuretics to deal with edema and I raised this very issue with the USA team of doctors at their recent RLS symposium. The body may hang onto water is you're not drinking enough but there are many conditions which lead to edema. I HAVE to take diuretics regardless of the fact that they MAY make RLS worse. Since having COVID twice severely, problems arising with my kidney and heart function dictate that as necessary. Giving the above advice is very dodgy indeed as each persons reactions and medical history is unique. If I'd have followed that advice I would have ended up in hospital.

Giving specific advice like this is a real issue and although designed to help people can be dangerous when attempted without medical supervision. I have educated my own GP as to what is happening to me (I have a medical background) and his own interest and research have led to him being able to support me better than any specialist as he treats me holistically. I am very lucky to have his support.

[SueJohnson in reply to HilsK]

That is a good point. I will change my advice to indicate this.

[Fingerandus in reply to HilsK]

i have high blood pressure and take Irbesartan with a Diuretic included.. i have swollen ankles and constant hot burning feet while i take lyrica [ pregabalin]. i have been taking this drug since i was diagnosed with periphial nueropathy 8yrs ago .I am so pleased i am nearly free of this drug. I dont get much sleep and tonite i have cut my pramipexole down by 1 quarter.. so i guess i will be here a while, i do research my family tree so something to keep me occupied i do hope you can overcome your health issues ...

[Seaview20]

My sister developed very severe edema after starting Gabapentin. Her lower legs are now so swollen she cannot walk. I researched the causes at the time and Gabapentin was the only big change, plus I could see that edema is one of the possible side effects. She refuses to stop taking it and is now pretty much confined to her flat and her legs have to be kept bandaged. It fills me with so much horror that I won't touch the stuff, even though my RLS can be drive me nuts at times. I take occasional Tramadol, low dose max twice a week or paracetamol and codeine. I have a bath every night which brings some relief. I know that other people do take Gabapentin without this horrific side effect, but I really want to warn others how bad it can be if you are susceptible to this.

[SueJohnson in reply to Seaview20]

That is horrible for your sister. Has she tried switching to pregabalin? Although they are basically the same drug except one doesn't 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. Divide the gabapentin amount by 6 to get the correct dose.

One shouldn't be afraid to try gabapentin as one can easily come off it if the side effects are too much without any withdrawal effects as long as it is done very slowly .

[Seaview20 in reply to SueJohnson]

Thanks Sue. She won't consider a change and insists that Gabapentin is not the issue. She may be right, but all I see is no swollen legs before Gabapentin and hideously swollen legs after. Thanks again for all you do for the people on this site.

[SueJohnson in reply to Seaview20]

Try telling her that the pregabalin is basically the same thing as the gabapentin and will stop her RLS just as well and although she doesn't think her swollen legs are because of the gabapentin that nothing ventured nothing gained. Surely she would like to be able to walk again.

[Fingerandus in reply to Seaview20]

yes Sue is a good listener i told my doctor that i talked to people from all over the world all with restless legs and i am pleased i found this sight

[Cobobay in reply to Seaview20]

This is what I'm very worried about ad my legs are swelling at the moment after just 1 week and I can see where my socks have been already, I am on bendroflunethiazide already for water retention so as I say I'm really worried.

[HilsK in reply to Cobobay]

It is perfectly OK to take your diuretic at the same time as Gabapentin or Pregabliin. There are MANY drugs as well as medical conditions that cause edema in the legs and ankles as well as gravity!! Doctors regularly prescribe diuretics for that. It helps reduce the edema tho that too has side effects. I hope things improve for you.

[HilsK]

People react so differently to drugs! To some the edema is lass of a problem with gabapentin than the gastric problems that may happen. Or even kidney issues. We are all so different with our medical histories and needs and indeed body chemistry that there's no one rule fits all. I had to come off Gabapentin/pregabilin and it made no difference to the edema I have in my lower legs which was caused by the effects of two serious bouts of COVID, nothing to do with RLS. I take a diuretic Fruseamide 40mg x 2 daily because of my issues and that helps enormously. We all have to find our own way through this awful disease. And it can be hell!

[SueJohnson]

As a result of Hilsk's comment, let me amend my response. If your doctor feels your edema is bad enough that it needs treatment s/he may prescribe a diuretic but be aware that for most people, diuretics can make RLS worse so discuss this with your doctor.

[Cobobay in reply to SueJohnson]

Sue what about bendroflunethiazide is this one of the ones you said that does as I'm still on these and doctor doesn't eat me to stop!

[SueJohnson in reply to Cobobay]

Yes

[Cobobay in reply to SueJohnson]

My legs right up to my knees have swollen today I'm going to stop taking gabapentin, maybe increase the ropinerole more.

[SueJohnson in reply to Cobobay]

You might want to try switching to pregabalin. Although they are basically the same drug except you don't 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. The starting dose would be 25 mg.

[SueJohnson in reply to Cobobay]

Try switching to pregabalin after the swelling goes down. As mentioned some people find that the side effects that bother them on one don't bother them on the other. The starting dose would be 25 mg.

Otherwise you only choice is opioids.

[joker826]

Gabapentin ha helped with my RLS. I take it with Trazodone prescribed by my primary physician. Taken together is a tremendous help.