Gabapentine

[Marmav]

I have had RLS for many years. I am 85 years of age. My doctor prescribed Amitryptiline 10 mgs last year but I found that after a while it had no effect whatsoever. My doctor has now prescribed Gabapentine but on reading the leaflet with the package it has so many side effects that I 'm afraid to use it. I have recently had a knee replacement so have been on oromorph and the leaflet says you can't take it with opiods. I have only just stopped taking oromorph but I feel it may still be in my system. Any advice would be appreciated.

[Madlegs1]

Did you experience RLS while you were on the oromorph?

[Marmav in reply to Madlegs1]

I was free from RLS whilst on the Oromorph. It was such a relief but because of the risk of addiction I have to stop it.

[Madlegs1 in reply to Marmav]

What was the addiction issue you had??

Low dose opioids are not addictive unless you are of an addictive disposition.

I've been on Oxycontin 25mg per day for 8 years now with absolutely no addiction issues whatsoever.

Too many people and doctors are neurotic over the hyped up issues of opioid addiction.

[Weezie99 in reply to Marmav]

At 85, why would you care if you got addicted? I'm 70. I take Vicodin for my RLS. I could not care less about addiction. I only care about relief. I've been taking this drug for 7 years now, at the same dose, and getting constant relief. Just do what works for heavens sake!

[CaraCara in reply to Weezie99]

Good reply. I'm also 70 and I don't give rats about addiction issues at my age. All we want is relief.

[Joolsg]

Welcome Marmav,I'm surprised Amitriptyline didn't trigger severe RLS. 99% find it triggers/worsens RLS and it's on list of meds to avoid.

Your GP is correct to prescribe gabapentin, but he should start you at 100mg at night, then increase by 100mg every other night up to 1200mg, monitoring as you increase.

Side effects of dizziness, double vision, water retention and increased appetite reduce after 2 or 3 months.

Do NOT let your GP prescribe Ropinirole, Pramipexole or the Neupro patch. They're no longer first line treatment amongst experts.

Your GP should do full panel, morning, fasting blood tests and ensure your serum ferritin is above 100, preferably 200. Ask for the actual numbers as the GP will say bloods are normal. They probably aren't, as most RLS responds to increasing serum ferritin and brain iron.

Check if any other meds you are on may have triggered/worsened RLS. All anti depressants, including Amitriptyline, sedating anti histamines, sedating cough meds, statins, beta blockers and PPI meds can worsen RLS for the majority.

Oramorph should be out of your system by now. Opioids can cause respiratory depression with gabapentin, but usually where there's a history of respiratory issues. Oramorph will have helped the RLS.

What did you used to take for your RLS before Amitriptyline?

[Marmav in reply to Joolsg]

I was given some drugs years ago but I felt like a zombie the following day, didn't want to do anything or go anywhere so I stopped them and just suffered the RLS for years. The amitriptyline did work for a few months but had no effect at all until 6 weeks ago when I had my operation and I was given oromorph for the pain. Of course, that really gave me respite from the RLS. Thank you for your advice.

[SueJohnson]

I agree with Joolsg but let me clarify and add a few things.

You say Amitryptiline does work. It was never meant for RLS but is a anti-depressant. If that is what you were using it for, I would suggest you ask for trazodone which is safe for RLS. Others except Wellbutrin aren't. Ask your doctor about weaning off the Amitryptiline while starting trazodone.

Gabapentin is the first line-treatment of RLS. As Joolsg said above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) as those are no longer the first line treatment because of the danger of augmentation. Don't be the afraid of the side effects of gabapentin. One would be scared of ever taking any medicine reading those leaflets. Double vision is not a common side effect although dizziness is. And edema can be especially at higher doses. I have it but it is not a problem. It will take 3 weeks before it is fully effective. I would not increase it above 900 mg until after the 3 weeks as it is possible you won't need more. 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 as the peak plasma level is 2 hours. 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. As mentioned 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. " If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason.

If you haven't had your ferritin checked recently as Joolsg advised ask for a full iron panel. Stop taking any iron supplements 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.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, 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.

[Marmav in reply to SueJohnson]

I have been on Lansoprazole for years. I also take Losartan for high blood pressure and since last year I take rosuvastatin. I have wondered if the Lansoprazole affects RLS but I can't do without it. Over the years I have tried magnesium, iron tablets with the hope that they would help. I also use hemp cream on my legs at night which helps. Thank you for the advice. I feel a bit more confident about taking gabapentin now. I shall certainly try it.

[Marmav in reply to Marmav]

By the way, I was prescribed Amitryptilene specifically for my RLS.

[SueJohnson in reply to Marmav]

Amitriptyline is a tricyclic anti-depressant and won't specially help your RLS and in fact makes RLS worse for most. The only safe anti-depressants for RLS are trazodone and wellbutrin.

Lansoprazole is a proton pump inhibitor and also makes RLS worse for most. A safe substitute is Gaviscon Extra Strength Tablets and Liquids . Do not take Gaviscon within 2 hours before taking iron or within 2 hours after taking iron. Also don't take within 2 hours before or after taking: antihistamines

All statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

[Madlegs1 in reply to Marmav]

Both Lansoprazole and the statin are likely to cause you RLS.

[davchar23 in reply to Madlegs1]

Dear Madlegs1,

Your post is the first time I have seen that Lanzoprazole can be a RLS trigger? i have been taking it for many years and so would like to know how important it might be for me to stop.

Regards

Davchar

[Joolsg in reply to davchar23]

ncbi.nlm.nih.gov/pmc/articl...

Lanzoprazole and other proton pump Inhibitors can worsen/trigger RLS. It's thought they reduce iron uptake/absorption.

Try a good probiotic like Symprove and gaviscon.

The RLSUK website has all this information.

rls-uk.org/medical-treatments

[Madlegs1 in reply to davchar23]

As Jools has replied.

In general all the -- azoles are RLS unfriendly.

But it can depend on how big the dose is.

I take naproxen that has an *azole in it ( Vimovo) and don't get too much a reaction. If it stops me getting stomach ulcers etc, then I'm happy enough to take the risk.

That's what we are all about. Balancing medications.

Good luck.

[Simkin]

I agree with Sue. If you read the leaflets you won't take any drugs.I also agree with Joolsg re amitriptyline making RLS far worse.

I have been taking a high dose of gabapentin with no side effects at all.

I have now lowered the dose but take it successfully with the opioid buprenorphine.

[Jumpey]

I agree with Madlegs.I have been taking oramorph for years with no addiction issues. Unless you have particular issues with addiction you could continue with it.

[SaltyUK]

I’m sorry to read about your situation. There's lots of good advice given so far. I have had RLS for most of my life. I used to take Ropinirole but realised that I was suffering from augmentation and asked my GP to switch me to something else. I now take 900mg Gabapentin. 600mg early evening and 300mg 1-2 hrs before bed. My RLS has finally gone completely. I now get about 8hrs sleep at night. I do not have any side effects that I can think of.

[Cobobay]

Hello, I'm sorry your suffering with RLS, I am trying to come off Ropinerole after swapping from pramipexole alternatively, both are awful drugs, so please don't let your doctor prescribe them as they will not work after a while and will make your RLS worse. I was given Gabapentin to try and gave up due to my legs swelling after about 10 days. I carried on with ropinerole, which was not , the dose was getting higher and higher with no effect. I then restarted the Gabapentin with the help from Sue on here, I cannot thank her enough. I'm now on 300mg Gabapentin and down to 0.25mg of ropinerole. I'm finding it hard with the low dose but coping just, I cannot wait to stop this last tablet for good and just be on the Gabapentin. I have health issues and was scared of Gabapentin because of the side effects, but I can honestly say, I've had none and in fact I have lost weight, which has helped with my conditions. So if you could give them a try, I'd say try them, not everyone get the side effects listed. Good luck. I hope you find something that helps you x

[Wtfisup]

Oh my, Marmav! I skimmed through through your replies. Chiming in with mine because I’ve taken so many different meds, read the leaflets, heard the “studies have shown” stories and followed doctors orders.

I took gabapentin. At over 1200mg day, I felt no changes good or bad so we started tapering process so I could try something else. It was awful. Same thing happened with Cymbalta. Hypertension, vivid nightmares (when able to sleep), anxiety, etc..

We are all unique (some of us antique) and it took years for me to the find combination that works…for me.

I take 150mg x2 pregabalin, 10mg x3 Baclofen and 10mg oxycodone as needed.

May God bless you with a compassionate provider and a med or med combo that brings relief to you! 🫧✌️🌎

[SueJohnson in reply to Wtfisup]

I had to laugh at the We are all unique (some of us antique). (I am 83)

[Marmav]

I have read all your answers to me and am very grateful for all the advice. I will definitely now try the gabapentin. Thank you all very much.

[Wtfisup in reply to Marmav]

Thinking of you. Please keep us updated on your progress. 🫧🤗

[Grammieof4]

amitriptiline is known to make RLS worse…