I had an absolutely horrible night last night. I take 2mg of Ropinirole but took an extra one last night. It's very ineffective and causes me all sorts of weird problems like confusion and cursing in a kind of semi-conscious daze.
Which is best, Gabapentin or Pregabalin, and how much would I have to start on?
⁸First you have to get off Ropinirole.
1. See your GP & ask for full iron panel, fasting, morning blood tests. If serum ferritin is below 100ųg, get iron pills and take every other night with vit C on empty stomach.
2. Get your GP to review & replace all trigger meds ( listed on RLS-UK website) like anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds.
3. Switch to NORMAL release Ropinirole and get some 0.25mg pills.
4. Reduce very slowly by 0.25mg every 2 weeks with the help of 30mg codeine, 50mg tramadol or 10mg oxycodone. RLS will flare up at every reduction, but should settle.
5. Start pregabalin ( or gabapentin) about 4 weeks before the last dose of Ropinirole. It will NOT help your RLS until about 4 weeks after the last dose of Ropinirole.
Side effects will subside after about 2 months. Different people react differently to pregabalin and gabapentin so choose one and stick to it for at least 2 months before swapping. The doses are set out on RLS-UK website. There's no point going above 900mg gabapentin or 150mg pregabalin until you're off Ropinirole completely.
It's tough, but most people on this forum have been through it.
You say you have weird side effects, so definitely get off it. It WILL cause severe worsening of the RLS. Have you experienced any Impulse Control Disorder? Gambling, impulse spending. OCD collecting, hypersexuality?.If so, you need to see a lawyer to take legal action.
Good luck.
I'm glad you have decided to come off ropinirole.
First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
I agree 100 % with Joolsg. To expand on what Joolsg said: to come off ropinirole as she saud 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 as she said 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.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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).
I always suggest one starts with gabapentin as you can increase in smaller doses. Once you find the amount that controls your symptoms you can make a direct switch if you want. You would divide the gabapentin dose by 6 to get the equivalent dose of pregabalin.
The drugs are very similar and the side effects are basically the same but some people find that the side effects that bother them on one don't bother them on the other.
Last year you were advised to have your ferritin checked. Did you ever do so? If so what was it?
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...
Thank you both for you advice. Not sure how to just do another post so replying to Sue.
I was actually on 1.5mg of Ropinirole a night but had to go to 2mg because it became completely impossible to get 0.5mg pills - some sort of supply chain problem. I can only assume 0.25mg will have similar problems.
In the past I have gone completely cold turkey and stopped taking Ropinirole. The withdrawal symptoms are horrible but is there any other reason than this for slowly coming off it rather than just stopping? For example, permanent neuro damage or something?
My doctor did try to get my iron levels up but prescribed a really naff over the counter supplement called Forceval. Have been on that for around 9 months with no real benefit. It only has 12mg of iron per tablet. Almost run out of the last batch and can't be bothered asking for a repeat prescription - I could probably get higher dose iron tablets from a health food shop or just eating lots of spinach.
Part of the problem is that to see the doctor you have to get their around 8am or something and I'm so tired in the mornings it's hard to do. I could book an appointment and wait several weeks as another option (UK, NHS).
A nurse friend of mine said she could get some Pregabalin or Gabapentin but I imagine it would be better to get it though the doctor.
I did get into online gambling a bit but nothing dangerous - just a bit of online poker ages ago and a few flutters on the horses (Liverpool Grand National). I don't think I'm seriously addicted to gambling or sex or anything.
The main problem is that I sometimes get really crazy. Groaning with discomfort, heart racing, sometimes falling asleep standing up and then collapsing - legs fold and I wake up hitting the floor! I broke my ankle doing that once.
I am convinced Gabapentin or Pregabalin is the way to go but doctor is reluctant.
I honestly despair at the lack of knowledge and training on RLS.Write a letter to your doctor telling him you have visited the RLS-UK site and that Ropinirole and Pramipexole are no longer first line treatment because of the very high rates of drug-induced worsening ( augmentation) and Impulse Control Disorder. Also tell him there have been hundreds of successful legal cases against GPs for failure to warn patients about ICD.
Tell him you are extremely concerned about the side effects of falling asleep without warning.
mayoclinic.org/drugs-supple...
This is extremely Dangerous and you could kill someone while driving.
If you set it out in writing, your GP WILL have to prescribe pregabalin or gabapentin or he is guilty of negligence..
Ask for a low dose opioid, codeine 30mg, tramadol 50mg or oxycodone 10mg, to help you through withdrawal.
Start gabapentin OR pregabalin around 4 weeks before the last dose of Ropinirole.
And definitely get the normal release pills. Call around all pharmacists to source 0.25mg pills.
Follow SueJohnson advice to reduce by 0.25mg every 2 weeks.
Start taking ferrous bisglycinate every other night. You buy them from Boots or Holland and Barrett.
Cold turkey is possible, but not advisable. It can be dangerous.
There is now increasing evidence that dopamine agonists cause permanent damage to our dopamine receptors. A slow reduction MAY reduce the risk.
I agree with Joolsg. If you can't get 25 tablets, just use a pill cutter to cut the pills in half.
You want to take 50 to 75 mg of the iron bisglycinate.
But did you ever get your ferritin checked? That is important because some people shouldn't take iron.
This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.
If not when you see your doctor ask for a full iron panel.Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100.
If so, what was it? Also what was your TSAT. If less than 100 you might need an infusion to bring it up faster as improving your ferritin to over 100 will help in your withdrawal from ropinirole.
To convince your doctor to prescribe gabapentin or pregabalin show him the appropriate parts of the Mayo Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...
Jools and Sue have been through what you're experiencing and you're best to follow their advice. Just a couple of points from me:
The British National Formulary lists 8 different ropinirole 0.25mg and 8 x 0.5mg tablets: while there are all sorts of shortages, it's most unlikely that all of these - from at least 7 different suppliers - are unavailable at the same time. Unfortunately, some pharmacies will only source from one supplier: e.g. Boots can be particularly poor in this regards. You may need to shop around some indy pharmacies I'm afraid.
bnf.nice.org.uk/drugs/ropin...
The only Forceval I know is not an iron supplement: it's a multivitamin that contains some minerals including a measure of iron. You can walk into any chemist or health food shop and pick up ferrous bisglycinate branded Gentle Iron.
Best wishes
On your doctor's apparent reluctance to prescribe gabapentin or pregabalin - alpha-2-delta ligands - while NICE published guidance to doctors on RLS treatment remains out-of-date in some areas it does say:
"An alpha-2-delta ligand is generally preferred for people with severe sleep disturbance (disproportionate to other RLS symptoms), comorbid insomnia or anxiety, RLS-related or comorbid pain, or a history of an ICD". (i.e. Impulse Control Disorder).
"As alpha-2-delta ligands pose little or no risk of augmentation, if clinically appropriate, they may be preferred first-line where the physician is inexperienced in long-term management of RLS".
Your doctor may of course be reluctant to admit that they are "inexperienced", but frankly virtually all UK doctors are - in real terms - inexperienced in effective up-to-date treatment of RLS!
Hi! I also take Ropinirole. I’m on 0.5 x2 twice a day & at night I take 4. If you experience ANY problems ( Not just with this medication.) stop taking & contact prescribing physician (Or go to ER if emergency.) As far as which medication is better, I take Gabapentin, 1800mg daily for pain, which is prescribed by my Neurologist. I also research ANY medication that is prescribed to me. You have to be your own Advocate & always , always questions! I can’t stress this enough. I hope this helps.
Pregabalin or Gabapentine
Gabapentin to pregabalin 
Gabapentin to pregabalin
pregabalin and gabapentin
