As many may know, low dose ropinirole is in short supply – 2ng tablets virtually unavailable, 1ng tablets ultraexpensive.
How easy would/will it be to switch to, say pramipexole?
I saw something about this here some years ago, and it sounded like it's quite an easy switch.
Can one just stop the ropinirole and take an "equivalent" dose of pramipexole ... even if, as in my case, it's quite a large dose (4 x 2mg)? per 24 hours)?
Yes you can. The equivalent dose is 2.0 mg of pramipexole.
However you are suffering from augmentation and are taking twice the maximum dose of ropinirole. And by taking that much pramipexole you would be taking 4 times the maximum dosage of pramipexole!!!
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you have to come off it as it will only get worse.
Stay on ropinirole even if it is expensive as it will take less time to come off it.
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 you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut.
To come off ropinirole (pramipexole), reduce by .25 mg (pramipexole 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 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.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (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 ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) for several weeks 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...
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, 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.
I completely agree with SueJohnson.You should seriously consider legal action against whoever allowed you to increase to 8mg of Ropinirole. That is negligent.
Were you warned about Impulse Control Disorder? See the RLSUK website for more information.
I'm a little confused that you write about shortages of 'low dose ropinirole' but then know that you are on 'quite a large dose'. I guess you're comparing 1 and 2 mg tablets with the maximum 5 mg (or 8 mg XL) tablets...
There are seven or eight different suppliers of low dose ropinirole tablets in the UK - but 'low dose' tablets are 250 - 500 ug (i.e. 0.25 - 0.5 mg).
At 4 x 2 mg/day you are on a fairly low dose for Parkinson's but a reprehensibly huge dose for RLS: please follow advice from Sue and Jools.
If your GP knew as little about the correct use of gabapentinoids for RLS as they do about dopamine agonists, when you trialled gabapentin you probably were never given the correct dose of gabapentin, split to maximise absorption, at the correct time of day (GPs usually follow guidance for peripheral neuropathy). In some ways it's not their fault in that they're not taught about treating RLS - and NICE guidance at that time was even worse than it is now.
Well, this is the information on the Parkinson's charity help page:
parkinsons.org.uk/news/park...
I was offered 28 1mg ropinirole at £55.99 by treated.com.
My usual pharmacy can do a bit better than that, but not match what the NHS usually pays for this dosage of the drug.
My docs practice think the situation may resolve in a month or so.
I have been supplied with 84 1mg tablets on the NHS. The idea is to get me past an appointment at the eye hospital next week, and then decide what to do.
Prolonged-release are available, but not very suitable for RLS, I think – I don't need the drug active in the morning (though some do, I read with dread).
While there are extensive problems, that Parkinson's link refers to products including ropinirole from Teva Pharmeceuticals - who are only one of at least eight listed suppliers of ropinirole. That's not to say that shortages aren't more widespread, but some pharmacies are flexible on sourcing, while others have a usual supplier and will not go elsewhere.
As to where to go from here, I remain doubtful that the past trial you had of gabapentin was properly managed, i.e. in the way that Sue has outlined. If not, it was never going to work.
But by now the ropinirole *may* have damaged your receptors so that gabapentin *may* not work now even if introduced correctly.
And I wouldn't be at all surprised if your doctor knows nothing about the management of RLS with low dose opioids such as buprenorphine, and the fact that these do not lead to opioid addiction.
healthunlocked.com/rlsuk/po...
Apologies, I know that you want a simple short term solution to what you hope is a temporary problem.
Best wishes for whatever you decide to do, but be aware that you could just be kicking the can a little further down the line if you don't tackle it now. Change is of course difficult, but it gets harder not easier with age.
Thank you very much for your replies. I was trying to keep it simple and not put anyone to the task of warning of the dangers of augmentation.
My post from 7 years back
healthunlocked.com/rlsuk/po...
is evidence of my knowledge of the issues.
Reducing my ropinirole is unthinkable to me. Forgetting to take it is sheer misery. I have been on the 8mg for some years now, and I think someone said on here once, that symptoms ultimately level off as one gets into senior years (I'm 72).
My GP's practice may not be the most knowledgeable on RLS. They did, however, let me try gabapentin. I had a load of side-effects, but it had absolutely no effect on my RLS. I find this very regrettable, but there it is.
I understand opiates are also not a sure-fire solution – 30mg of codeine doesn't touch it, for example – and I can't really face the change over as above.
I'm really just hoping the levelling-off with age is going to be true for me.
Are you saying 2mg pramipexole is equivalent to 8mg of ropinirole (not 2mg to 2mg ropinirole)? I rather think that will be the case from distant memories of looking at the figures. And I could have taken 4mg of ropinirole the night before taking 1mg of pramipexole the following afternoon (as far as immediate side-effects/interactions are concerned)?
Just the opposite. RLS gets worse as we age.
Codeine is a very weak opioid.
Gabapentin won't work while you are on ropinirole. It can have side effects you can't live with but many people find that they don't have the side effects that bother them on Pramipexole
There is also another medicine that has helped some people on this forum and in some cases has completely eliminated their RLS.
Looking at your post from 7 years ago., you said opioids are also dopamine agonists. They are not as Madlegs said back then. And I guess further in that post you realized that.
You mentioned Targinact (Oxycodone hydrochloride/naloxone hydrochloride) is not recommended for treatment of restless legs syndrome. However, it now is. Since it only lasts 4 to 6 hours or so, it is not the best opioid. Buprenorphine lasts 24 hours so is preferred.
People on opioids for RLS do not get addicted nor abuse them and if you look at the Mayo Algorithm they are recommended for situations like yours.
If you still live near Manchester Dr Christopher Murphy a Neurologist is excellent.
Sue is right. I was in a similar situation to you a couple of years ago and spent a miserable two years first coming off Ropinirole and then trying to manage it with Pregabalin alone. I was at my wit's end with sleep deprivation when I found this forum and read about low dose opioids.
I tried Targinact, but the short half life meant unbearable mini withdrawals. I'm now on Buprenorphine, and it resolved ALL my RLS symptoms overnight. Apart from a few days of nausea it's been nothing short of miraculous.
Please consider seeing one of the doctors mentioned on this site. Dr Christopher Murphy if you're in the north of England or Dr Robin Fackrell (in Bath) if you're further south.
If you switch to Buprenorphine, you could completely avoid the misery of Ropinirole withdrawal. People here can guide you on how to do this.
Trouble is, I don't really think I could face days without taking ropinirole, my symptoms are so severe. As you saw in my post seven years ago, I did know about augmentation and I did try to communicate with my doctors that opiates might be the way to go. I really think it's up to them and local medical authorities that have not advised the use of opiates to come up with a solution for the likes of me.
Since I last posted, I had a look at the side effects of both ropinirole and pramipexole, and I see that they're almost the same, except that pramipexole also produces something like hallucinations. I already have the shuddering effects with ropinirole. Actually, that ropinirole causes the shuddering was something I hadn't known.
I understand that iron and dopamine are not actually in short supply in the brains of most sufferers. To make dopamine you need both iron and tyrosine hydroxylase, and I understand that it's the tyrosine hydroxylase that is the controlling factor in the production of dopamine. So possibly research needs to look at that aspect. I don't know if any of you have read that or know anything further on it.
switching from pramipexole to gabapentin
Switch to another Parkinson drug?
Anyone use DAs intermittently?
