Wife been on ropinirole for 20yrs small dose a day. Since hip replacement RLS has got far worse had to increase dose to 1mg per day which is still not really helping .getting severe leg jolts in evening.which is frankly getting her down. Can't sit or lay down. Any ideas to assist plse thanks
Worse since Wife had hip replacement - Restless Legs Syn...
Worse since Wife had hip replacement
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Leg7
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Joint replacement surgery is a known trigger.It can often involve blood loss, which reduces iron.
Also, the anti nausea med that is given during surgery makes RLS worse..Zofran is the safe alternative.
Your wife will also have been given opioids for post surgery pain. They will have helped RLS, but when she stops them, opioid withdrawals cause severe RLS.
Ropinirole is no longer first line treatment because of the very high rates of Augmentation ( drug induced worsening) and Impulse Control Disorder.
So, do NOT increase Ropinirole.
Get full iron panel, morning, fasting blood tests and ensure serum ferritin is above 200ųg/L via iron pills every other night OR an iv iron infusion.
Ask the GP for a low dose opioid, like codeine until the serum ferritin has been raised and the RLS settles.
Then, come back here and we will help you talk through withdrawal of Ropinirole.
Like all dopamine agonists, Ropinirole WILL eventually cause RLS to worsen significantly. Withdrawal is then the only option and it's hellish. So better to do it when your wife is fit and able to move around.
Read RLS-UK website. It has all the information on Ropinirole and other dopamine agonists. And bear in mind UK doctors aren't taught anything about RLS.
OMG. She is taking some iron and magnesium now. Has had ropinirole since 2002. One small tab a day was generally fine. As I said since hip Op 6 wks ago it's been severe. She has some codine. Last night had to take 2mg of ropinirole which she has never had to do before. What strength Codine do you suggest plse. Thanks
Do Not increase Ropinirole. It will make it worse. Codeine 30mg at night will help.
She starts off mid evening. Not every night.but moat nights .and continues in bed. Codeine I believe has to be obtained from her Doctor. Will ask if can take codeine and ropinirole together.
Yes, you can. If you have to contact the doctor, maybe ask for codeine or tramadol; the latter is stronger and a 50mg tab (or two) may work better than the codeine. And reduce the ropinirole to her standard 0.5mg (?) again. The combination will work better.
When hip has healed, first come off the tramadol or codeine (assuming she’ll get it prescribed) slowly if necessary (half tablets reduction ever few days) and see if RLS again controlled by her earlier dose of ropinirole only. It may take a few days after each reduction to settle. After that, evaluate. AND - very important - read about augmentation. Here and on rls-uk.org. But that is for later.
Hope this and Joolsg’s reply will help short term.
As your wife has been on Ropinirole for 20 years, she will definitely be at the stage where the drug has turned on her. These drugs permanently damage the dopamine receptors.The best treatment is set out in the Mayo Clinic Algorithm, written by the world's top experts.
They are all now warning against dopamine agonists.
When your wife's hip is feeling better, she should start the reduction process. Leaving it any longer means she will be less able to get through the brutal withdrawal process.
She should switch to normal release Ropinirole 0.25mg pills and reduce by 0.25mg every 2 weeks.
Use 30mg codeine, 10mg oxycodone or 50mg tramadol to settle the increased RLS before reducing further.
Ensure her brain iron is at the right levels and if need be, pay for a private iron infusion. The Iron Clinic in Harley Street will do one for around £800.
Also check ALL other meds. Many trigger or worsen RLS, including anti depressants, sedating antihistamines, beta blockers, statins and PPI gastric meds. There are RLS safe alternatives.
Learn all you can. Knowledge is power.
Sadly, UK GPs know zero about the disease, the latest research or treatments.
Hello, I had the same increased RLS after my hip replacement surgery. The biggest improvement I made was to eat an anti inflammatory diet. There is severe whole body inflammation after surgery so it takes a month of strict eating. Eg, no sugars, alcohol, white carbs,... eat loads of vegetables. It also improved my liver enzymes greatly and simmered down the RLS. That's also when I decided to start reducing my Pramipexole and to get off it. I now take Gabapentin successfully.
Thanks yes was on 0.5 for 20yrs. Is there any site can get codeine. ?
No. Codeine 30mg is an opioid and only available on prescription.However, you can buy low dose codeine with paracetamol from any UK pharmacy. Sopadeine max is one brand, but taking paracetamol long term is NOT advisable.
Your wife should now have a full consultation with her GP to discuss her ongoing RLS, raising serum ferritin and obtaining replacement medication for RLS.
She's taken Codeine previously and in the Hospital with her hip replacement had bad side effects sadly.
I would recommend for a low dose opioid buprenorphine pills not the patch or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or she will have mini withdrawals as she likely did when the opioid she had from her surgery wore off.
And she should definitely not increase her ropinirole above the .5 mg as she will then be much more likely to suffer augmentation - instead quickly ask for the low dose opioid.
Sue, I usually agree with you. Not this time. Because of the long lasting character of buprenorphine and methadone, it is lijely that it will be more difficult to come off them once this woman has healed from her hip replacement. These two options are good/the best if one has decided to switch to an opioid to treat the rls ‘permanently’. I think that is an issue to be discussed between this patient and her doctor. I understand her husband is looking for way to ease her current but temporary situation following the surgery. Also, buprenorphine and methadone are big steps up in terms of strength compared to codeine.
Good point. She did have bad side effects on codeine though so that's not an option. and she needs something so she doesn't increase her ropinirole to 2 mg.
Sue, your last point “so she doesn’t increase her ropinirole” is the crux. Excellent summary.
I don’t know where you are based. US? UK? Rls.org, the us patient organisation has good info on what to do around surgery. You’ll have to become a member, but it is definitely worth it. Also, the Mayo Clinic update treatment guidelines for RLS give a clear and comprehensive overview of current treatment options/ advises. I don’t think they specifically mention surgery, but it is good to familiarise with the content and maybe share with the treating doctor.
Devon
So UK. Have a good look at the rls-uk.org website, the UK patient organisation. Also, Joolsg is a board member and very experienced. I am in The Netherlands, and I recognise that the situation with doctors can be quite different between countries (UK-NHS, US-multiple insurance systems), and not all advise can be followed, as one always needs to work with one’s doctor.
How is your wife doing now?
Welcome to the forum. She will find lots of help, support and understanding here.
I agree with everything that has been said. Let me put it all together for you.
Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS and one expert believes everyone will eventually suffer augmentation which believe me she doesn't want because it can be hard to come off it and the longer she is on it, the harder it will be to come off it and the more likely her dopamine receptors will be damaged so that the now first line treatment for RLS which is gabapentin or pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
However that said, since she has been on .5 mg for 20 years ( 4 mg is the maximum) it is possible she won't suffer from augmentation and it is possible her dopamine receptors have already been damaged which means she would go through the suffering to come off it and then might be left with the only option to go on a low dose opioid.
So I won't give you more detailed advice until she decides whether she does want to come off it.
Has she had your ferritin checked? If so, what was it? This is the first thing her doctor should have done. Improving one's ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when she sees her doctor she should ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her transferrin saturation to be over 20% but less than 45% and her ferritin to be at least 100. If they are not, post them here and we can give you some advice.
And if ferritin is below 100, one is more likely to suffer from augmentation per the RLS foundation publication on augmentation so best to have tested and increase if needed.
Meanwhile 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, 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. She should keep a food diary to see if any food make her RLS worse.
Many medicines and OTC supplements can make RLS worse. If she is 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in.
Hi, I was on ropinorole, worked great at first. But over time it makes RLS worse. She should see her GP ask for an alternative. I changed over to pramipexole but the same thing happened . I am now going through hell trying to get off pramipexole. She should keep away from those two drugs. I do hope she gets some relief. Pregablin or gabapentin is a good alternative according to RLSUK. Good luck
Thanks. She took 1mg last night was fine nothing in evening or during night .no idea why bad one day and nothing the next.?
Maybe it's settling after the surgery? But do keep an eye on things, keep up to date about augmentation. And do consider switching to pregabalin.
Welcome to the forum. You will find lots of help, support and understanding here.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
To come off pramipexole, reduce by half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount 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.
If that is too much to reduce by you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it.Then reduce by that amount every 2 weeks
As you are aware gabapentin and pregabalin are now the first line treatments for RLS. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) 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. (You don't need to split the doses with pregabalin)
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 (it is OK with pregabalin) 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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.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 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...
Meanwhile 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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
If the RLS tarts in the evenings I would suggest that it's due to things she's eating thoughout the day, by morning the RLS is gone because she'e fasted overnight. Foods trigger RLS by causing inflammation in the nerves which makes them hypersensitive and give off signals whwn there's no need or give off stronger signals.There are lists of foods that cause inflammation and topmost on mosr lists are carbohydrates especially refined ones like refined sugar, flour based foods (like bread, biscuits, cakes) and fruit juices. The second cause of inflammation is often refined seed oil which causes oxidative stress. Processed food is full of this stuff so often the easiest thing to do is to avoid processed food altogether, this eliminates a cause of PLMD which is often mistaken or comorbid with RLS, which is artificial preservatives like potassium sorbate or potassium metabisulphite.
I was on 4 mg and finally doctor switched me to Lyrica
Did that help?
Hello Leg7. I feel for your wife. I have had 3 joint replacements and suffered extreme symptoms after each, I personally think it is a combination of blood loss /iron loss and inflammation. My symptoms did subside after some time. I don’t recall how long it took for the first 2 surgeries but the last one, I felt better after about 3 months. She will need to come off of the ropenerole after she has recovered. She must NOT increase her dose. Wjishing you both the best.
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