I am 87 yrs old and have suffered from RLS for about 40 years. Up to 2016 it was manageable mainly occurring during the day. Then it moved to 24 hrs and I had to seek medical help. The GP diagnosed RLS and prescribed 2mg Ropinirol - the “go to” treatment at the time. I am now augmenting - the symptoms are starting earlier and lasting longer (but are still manageable.) I am reluctant to change medication and endure the consequential withdrawal problems because I also have fairly severe (and worsening) Spinal Stenosis which is likely to be life limiting. The GP has recommended 25mg Pregabalin to be used on an ad hoc basis when undertaking car journeys or attending entertainments where I am sitting for long periods. (in addition to the Ropinirol). Does anyone have experience of taking “supplementary” medication like this?
Thank you for your time.
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monosnapper
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Where are you monosnapper? UK or USA.If UK or USA Ropinirole was NOT the go to med for RLS. Drug-induced worsening had been known about for at least a decade and many, many patients were already getting off it in 2016.
Did your doctor warn you about the high rates of Augmentation and Impulse Control Disorder?
Did the GP order full iron panel blood tests and review all meds to identify triggers?
It would help if you listed where you are and ALL existing meds in your bio.
We can advise/direct you better.
And get a new GP asap.
This one doesn't know
even the basics.
Adding 25mg pregabalin is a complete waste of time and meds.
It will NOT stop Augmentation symptoms and it's a tiny, useless dose.
Read Useful Resources on RLS-UK WEBSITE.
It sets out Withdrawal schedule and iron therapy that your doctor needs to learn about.
As you are 87- Withdrawal will be very difficult.
You will need to see an expert who can safely get you off Ropinirole with minimal Withdrawals.
The only way to do that is probably with low dose buprenorphine.
So, once you tell us what other meds you're taking and the results of iron blood tests- we can recommend a knowledgeable doctor.
It won't help your RLS. It may help the pain from your spinal stenosis which I have but not at that low dose and not taken intermittently.
Why do you say your spinal stenosis is life limiting as it is not life limiting. Google it if you want. It is painful and prevents you from enjoying life to the fullest but won't kill you. I'm 84 by the way.
I advise you to come off the ropinirole and on to gabapentin or pregabalin which will help your spinal stenosis. It helps mine.
Since you are suffering now, I suggest you add 25 mg and let your symptoms settle for a few days before startiog the reduction
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 if needed.
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. 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 you find the withdrawal symptoms too much you can slow the process down by getting an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 (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 divide the doses on 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.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." 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).
Have you had your ferritin checked? If so what was it? 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 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, carbs, foods high in sodium(salt), 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. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
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 and any other health conditions you have.
Thank you for your reply Sue. I am male and in the Uk. I did not intend to imply that I would die from Spinal stenosis - just that I’m getting increasingly limited in what I can do. At present it’s mobility aids heading for a wheelchair. I admit to ignoring the RLS recently. It took me 3 years to get a GP to organise a MRI scan to get a diagnosis for the stenosis but is clear that at a review last week he has no practical experience of RLS. He is trying to help but woefully ignorant.
Dr Johnathan Partridge , a neurologist at Stoke -on-Trent. Please let me know your experience if you see him. He was recommended by HilsK and you can message him to find out more.
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My experience with pregabalin.
