Edema of feet -Ropinirole and/or Gabapentin?

[Palm10Tree]

Do/can Ropinirole and/or Gabapentin cause edema of the feet?

If yes, does edema disappear once one is off Ropinirole and/or Gabapentin?

Thank you.

[ChrisColumbus]

Oedema/swelling of legs and feet is listed as a common side effect of both ropinirole and gabapentin.

Ropinirole (and the other dopamine agonists pramipexole and rotigotine) are no longer considered first line treatment for RLS amongst experts, while gabapentin is. But DO NOT suddenly stop taking any drug.

You need expert guidance from e.g. Joolsg , SueJohnson etc, who have been through withdrawal from dopamine agonists, on very slowly weaning off.

How much are you taking of each drug and how long have you been taking each? This will help others to advise you.

[Palm10Tree in reply to ChrisColumbus]

Thank you very much

[SueJohnson]

Edema is common in gabapentin and ropinirole. I have it with gabapentin but it is a minor inconvenience compared to the relief of RLS. Do not take a diuretic as that can make RLS worse.

Gabapentin is not going to help your RLS while you are on ropinirole.Once off ropinirole if you still have edema and it bothers you, you might switch to pregabalin. Although it is 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.

How much ropinirole are you on?

How much gabapentin are you on?

You would be wise to come off ropinirole as up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can then be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin Normally one would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. Most of the side effects 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

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.

[Palm10Tree in reply to SueJohnson]

Thank you SueJohnson from my heart. Thank you all for your advise. I’ve been following you for the last 3 -4 months and have no words to express my gratitude to you.

I blame myself first for not getting fully informed about the devastating medication (Ropinirole - instant relief) an MD Internist and a second MD - Sleep Specialist prescribed to me 1.5 year ago. On another hand I can’t believe that two doctors, one of whom is Board Certified in Sleep Medicine could do so much harm and ruin my health and well being that words can hardly describe.

Here is a summary of my situation: I had mild RLS for about 5 years that prevented me from falling asleep at night. I was very healthy, active optimistic, full of life. No medication except Citalopram 20 mg I was prescribed after a tragic event in my life in 2017.

Two years ago in 2022 I made the “mistake” of telling my internist about my RLS. He immediately prescribed 0.25 mg Ropinirole (NOT slow release), and I had no problems falling asleep for the first time in a years. I was so happy!!! Had I known what a nightmare I was entering!!! The MD had no clue about iron, ferritin, etc.

Then the augmentation started (I didn’t even know this term). I reached 1.5 mg Ropinirole in 6-7 months.

Soon after I was up to 1.5 mg , but totally unrelated, I decided to see a Sleep Specialist bc my husband said I was snoring a lot. I wanted to make sure I didn’t have sleep apneea. So I wanted him to take over the RLS issue too since I was told it’s a sleep problem. (By the way, I don’t have any sleep apnea).

He told me that what I was experiencing is called “augmentation” as if I cared how it was called. The sleep “specialist” had no idea about the iron/ferritin connection either. He prescribed 100 mg gabapentin, replaced by Pregabalin 150 mg three months later when I told him my augmentation got worse. I was then at 2.5 mg Ropinirole.

From June to Mid-November 2023 I was on 2.5 mg Ropinirole, 150 mg Pregabalin and 20 mg Citalopram.

By now I became very much informed about the “nightmare” of the medication thanks to you and the RLS Foundation. I asked the “Sleep Specialist” to check my ferritin and the other numbers. He said “how come I didn’t think about it?” !!!

My ferritin was 35, saturation was 17. He put me on prescribed iron capsules and in 6-7 weeks I noticed I didn’t need to increase the Ropinirole over 2.5 mg. Yayyy! The new blood test showed the ferritin up to 64 and Saturation up to 27. He changed me to Gabapentin 600 mg. I asked for iron infusion which I did in March 2024. I presented my plan to him and left to Europe for a couple of months.

On April 16 I started to reduce the Ropinirole by 0. 125 mg, thus taking 2.375 mg. Then, 5 weeks later, in May , I reduced it by another 0.125 mg. I’m now taking 2.25 mg and will continue the reduction every 4-5 weeks although I’m scared of how I’ll handle it as I go along. In the meantime I’m still taking 600 mg Gabapentin but am not sure why. However I’m afraid to stop it until I get your advise or of a doctor from the RLS Foundation.

Since April 16 2024 I’ve also gradually reduced and eliminated the Citalopram under the direction of a local psychiatrist. I don’t want to take any antidepressants any longer. It’s been some good years since the family tragedy that caused my depression.

On May 14 I repeated the Iron panel blood test in Europe where I’m till July. The ferritin is high, about 420 ( is it too high? ). I don’t have the exact results now while I’m writing.

Here are the health changes I’ve incurred in the last 8-10 months.

1. Severe pain in my bones from the waist down to the tip of my toes. The worst are the femurs when I go up or down the stairs. I can’t do it without holding rails or leaning on walls. (And I was doing Zumba 3 times a week up until a few months ago).

2. Swollen feet. I’m very worried about my kidneys and heart if I have water retention. THIS is why I asked if the feet edema disappears once I’m off Ropinirole and/or Gabapentin.

3. Burning and achy legs. I didn’t have it before.

4. Big weight gain which depresses me beyond words. I used to weigh 164 lbs until one year ago. Now I’m at 186. I don’t quite know why this gain since I’m very careful with my diet.

5. My breathing is labored when I walk or carry a few pounds in my hand. Again, is this a sign that my heart is affected? Maybe due to water retention? Due to weight gain, or both?

6. High anxiety generally speaking in front of the unknown, and in particular when I travel: out of 8 hrs flight from Detroit to Amsterdam in April, I stood and walked around for 6 hrs out of fear that the RLS will run me crazy.

7. Lack of mental focus where as before I was very sharp.

QUESTIONS:

1. Is fluid retention irreversible once I’m off ( if ever) Ropinirole and Gabapentin?

2. When and how should I reduce the Gabapentin?

3. Is there Any particular diet that I should follow to lose weight?

I’m devastated and cry everyday because of the ruin I turned into due to incompetent doctors and my lack of judgement of not studying more earlier in the process. I had great physical and mental health which are now gone.

All I want is to be rid of all the medication, Ropinirole and Gabapentin FOR EVER. I don’t want to ever take any medication anymore. I lost trust in doctors and this is very sad and dangerous.

I apologize to all of you for my long story, and thank you very much for your patience and advice.

I also apologize for some inconsistencies but I don’t have my blood test results in front of me right now.

[SueJohnson in reply to Palm10Tree]

Congratulations on your reduction! You are taking it very slowly but nothing wrong with that.

Once off both gabapentin and ropinirole, your edema should go away. I would start reducing the gabapentin as most of the problems you mentioned can be side effects of the gabapentin and a few of them from the withdrawal from the ropinirole except the pain in your bones. Gabapentin can cause joint and muscle pain but not bone pain so I would check with your doctor on that.

To come off gabapentin reduce by 100 to 200 mg every 2 weeks and you should have no withdrawal effects.

420 is not too high. Mine is over 608.

No idea on a diet as I have never had that problem.

Unfortunately most doctors in the US are not knowledgeable about RLS and follow the old guidelines and prescribe dopamine agonists. Mine did too, but when I hit 4 mg of ropinirole and asked to increase my dose he was smart enough to refer me to a knowledgeable doctor.

What city and state do you live in? I may be able to give you the name of doctor who is an expert on RLS.

Unfortunately you are going to need something for your RLS when you are off ropinirole and gabapentin.

[Palm10Tree in reply to SueJohnson]

Thank you very much. I live in Sarasota, FL.

[DesertOasis in reply to Palm10Tree]

Hi Palm10, your symptoms, which shouldn’t be taken lightly, are somewhat indicative of hypophosphatemia due to the iron infusion en.m.wikipedia.org/wiki/Hyp...

I know at least some of your symptoms started before the infusion, but the fact that you were doing Zumba just a few months ago leads me to believe some started after.

I assume you got the idea for the infusion by reading posts on here. Unless you’re anemic, iron infusions do little to nothing for RLS. That’s because RLS is unrelated to ferritin. If low ferritin was a significant factor then we would have RLS 24/7/365. Instead, we get RLS at night, when serum iron (not ferritin), drops. Hence, one of the best treatments is to simply take a highly bioavailable form of iron at night.

You might want to consider a low dose opiate such as codeine or tramadol in addition to or rather than Gabapentin.

See the experience of BooFoo71. She’s similar to you only she was on a DA for 15 years. She was able to come off the DA with the help of Tramadol and nightly iron. She now rarely needs the Tramadol. Though she was advised to take either Lyrica or Gabapentin on here she didn’t and I’m glad. It’s now just iron at night and magnesium by day for her, along with some other supplements.

We now know that most people that come on here were driven to DAs by use of an SSRI or HRT, or some other symptom provoking drug, and that in reality, their baseline RLS is mild. Weak opiates seem more effective in helping people get off the DAs than anything else.

You will get your great physical and mental health back. None of this is your fault. The good news is that while the SSRI probably drove you to the DA, it also probably acted as a counterweight to the DA - meaning the DA didn’t downregulate your dopamine receptors as much as it would have were you not on the SSRI. Confusing, I know. The tramadol or codeine will prevent a lot of suffering as you draw down. It’s worth asking your doctor about.

[Palm10Tree in reply to DesertOasis]

Thank you DesertOasis.

Very interesting information regarding the ferritin vs serum iron. Also about the potential “benefit” of being on SSRI. I just finished taking it and now I wonder if I should’ve stayed on it a little longer (at least 5 mg).

[DesertOasis in reply to Palm10Tree]

Nah, you suffered enough with the SSRI. And we all have learned from your suffering, so thank you. Now it’s time to get you back to baseline. If there’s a test, it might be worth it to check for the hypophosphatemia. There might also be an easy fix? Wouldn’t that be nice for a change 🙄

[Palm10Tree in reply to DesertOasis]

Hello DesertOasis. Next week I’ll ask the doctor to order some tests for me since I’m so concerned about the edema/water retention and my kidneys. Since you mentioned Hypophosphatemia I’ll ask her if there’s any test for it as well.

On May 14, 2024, seven weeks after the Fereheme iron infusion, the blood test I did early in the morning after fasting and not eating any red meat, spinach, etc. for 3 days prior, I got these results:

Total Serum Iron =106 ug/dL;

Ferritin Serum = 471 ng/mL,

Transferrin Iron Saturation = 34%

You mention in your reply one of the best treatments is to take the “Bioavailable form of Iron at night” (By the way, what is Bioavailable form of iron - obtained from food)?

With my result of 106ug/dL Serum Iron (granted measured in the morning not at night) I’d be afraid to take more Iron. Could you comment more on this aspect please?

Where/how can I find the post(s) of BooFoo71 you mentioned? I’d like to read it but don’t know how the find it.

Thank you very much.

[DesertOasis in reply to Palm10Tree]

Palm, I believe your serum iron is in normal range. Your ferritin is high but that is to be expected after an infusion. Are you noticing an improvement in RLS symptoms post -infusion? In a perfect world it would make getting off the DA easier.

Did your edema and shortness of breath start before or after the infusion? If it started after then I would hold off on the iron at night trick. Or just wait to see results of test for hypophosphatemia.

Here’s BooFoo71. Tap on her name then tap on her posts and replies.

healthunlocked.com/rlsuk/po...

[DesertOasis in reply to Palm10Tree]

Palm, how did test go?

[SueJohnson in reply to Palm10Tree]

Dr Nura Festic at Jacksonville Sleep Centre 6930 Bonneval Rd #2 Jacksonville, FL [phone] jaxsleepcenter.com/ That is quite aways from where you live but you probably would only have to see her in person once and then could probably do telehealth.

Better yet if you can afford it is Dr Joseph "Andy" Berkowski - Ann Arbor, MI who is associated with the RLS Foundation

Does teleconference in Florida, Ohio and Michigan but he does not take medicare nor any insurance He responds to emails. He can be contacted via his website at relacshealth.com/blog/why-a... There a number of blogs by Dr Berkowski at that site

[Palm10Tree in reply to SueJohnson]

Thank you a lot. I want to make sure I understand correctly:

1. Can I start reducing (until fully eliminating) the Gabapentin right now while still on Ropinirole?

2. Could my RLS get worse by reducing/eliminating the Gabapentin while reducing the Ropinirole in the same time?

Thank you

[SueJohnson in reply to Palm10Tree]

Yes you can. It is not likely your RLS will get worse since it doesn't help very much if at all while you are on ropinirole plus you are having a lot of side effects from it.

[Palm10Tree in reply to SueJohnson]

Hello again. SueJohnson you advise Magnesium to be taken at least 3 hours before Gabapentin. Right now I don’t take any vitamins, minerals or medication other than Ropinirole 2.25 mg and one 600 mg tablet of Glenmark Gabapentin at night. (Glenmark is the generic form of Neurontin that I get in the US). One of its ingredients is Magnesium Stearate !!!

Per your advise, in order to reduce the Gabapentin by 100 to 200 mg every 2 weeks (and eventually eliminate it completely) I need to change to Capsules since they come in 100 mg increments vs. tablets that come in 600 or 800 mg. The only brand I have access to while I’m still in Europe is called “Gabaran” which ALSO contains Magnesium Stearate. Do you have any advise?

Thank you very much.

[SueJohnson in reply to Palm10Tree]

the Magnesium Stearate is no problem. It just prevents the individual ingredients in a capsule or pill from sticking to each other and the machine that creates them.

[Palm10Tree in reply to SueJohnson]

Great. Thank you very much.

[Joolsg]

I had oedema on pregabalin. It could be both gabapentin and Ropinirole.Follow SueJohnson advice. Ropinirole is no longer prescribed by experts because of the very high rates of drug-induced worsening.