I have had RLS since childhood and self diagnosed in 2000 when I was on Pergolide which was discontinued. They then put me into Madopar which was ineffective unless I combined it with Pramipexole 0.088.
Having read all the dreadful things on this site for Pramipexole I have now changed to Pregabalin 25mg but this seems to be ineffective unless I take two Pregabalin at 4pm and 6pm and a Madopar 100/25mg capsule before bed.
Can anyone tell me if they think I am overdosing?
I also take a quarter of a Melatonin to help me get to sleep.
Any help is much appreciated.
Beverley
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Jeverleybane
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I see you live in the UK and therefore if it was a NHS doctor who prescribed these medications they should really be following the national guidelines for the management of restless legs.
These are issued by the National Instiitute for Health and Care Excellence (NICE)
Particularly, the guidelines identify two classes of medications to be used for RLS i.e. dopamine agonists and alpha 2 delta ligands.
Here's a link to the guidleines. See the section entitled "What drugs should I consider to treat restless legs syndrome?"
NOTE : in relation to the dopamine agonists (DAs) e.g. pramipexole the guidelines say you should be aware of the risks of taking a DA.
The main risk is "augmentation".
The risk of suffering augmentation due to taking a DA is quite high, depending on what dose you take. Of the 3 DAs pramipexole is the worst for augmentation.
Madopar - levodopa is not recommended for RLS. The main reason for this being that the risk of suffering augmentation is even higher than it is for a DA.
Something which is not identified in these guidelines, they are a bit dated and need reviewing, but RLS specialists are now recommending that DAs are NOT used as the first treatment for RLS. This is because of the risk of augmentation.
Your doctor therfore has you taking two medications both of which can cause augmentation. Madopar is the worst of these two and pramipexole is the worst of the 3 Das.
The alpha 3 delta ligands are gabapentin and pregabalin. These can be effective for RLs and do NOT cause augmentation.
Melatonin - this is not recommended for people with RLS
DOSES
Looking at the doses of the medications you have been prescribed
Any dose of melatonin is too much.
Any dose at all of Madopoar is too much
Pramipexole on it's own at a dose of 0.088mg may have been too little, but really taking any more than 0.18mg is increasing the risk of augmentation.
The minimum effective dose of pregabalin for RLS is 150mg, in one single dose. Some people find they have to take up to 450mg. 300mg seems common.
Pregabalin is not licensed for RLS, but the dosage is similar to that for nerve pain, but in ONE dose only, not 3 divided doses.
heres a link to the UK prescribing guidelines for pregabalin
Really you need to stop taking the Madopar. this presents a problem because firstly L Dopa is rarely prescribed for RLS these days , so your case ia unusual.
Sercondly you can't just suddently stop taking a dopaminergic agent either L Dopa or a DA.
It appears you may have been prescribed Madopar as if it were something like paracetamol which you take when you have a pain and don't take when you don't. This might be OK if you have intemittent RLS, say less than twice a week. However if you're taking it regularly you will have become dependent on it.
If you suddenly stop taking it there are three problems which can occur
RARELY - Neuroleptic Malignant Syndrome. This would require hospitalisation and is potentially fatal.
UNUSUALLY - Dopamine Agonist Withdrawal Syndrome (DAWS). This is a serious condition which can last for months and causes mental health problems, depression, anxiety etc.
ALWAYS - Withdrawal effects. These consist of severe worsening of RLS symptoms and sleeplessness.
You will need to withdraw from the Madopar very slowly then. This reduces withdrawal effects.
I confess however, that I am not entirely clear about this, but it may be possible to substitute pramipexole for Madopar. In which case an equivalent dose would be needed. However, I would further suggest that in this case, the dose of pramipexole should be then reduced to 0.18mg maximum.
As regards the pregabalin, I suggest that you ask the doctor to increase the dose. The starting dose is typically 50 - 75mg ONCE a day at night. It can then be increased up to 150mg at least in steps of 50mg a day.
There is no good reason for taking any if these more than once a day, at night, 2 hours before bedtime, both pramipexole and pregabalin.
If anyone starts to take them earlier, it's usually because they are getting symptoms earlier. In this case they may be already suffering augmentation.
IN SUMMARY
If you continue on your current regime, augmentation will probably be inevitable. You may already be suffering this.
I think you need to stop taking Madopar, but you must be very careful about how you do this. It may be possible to substitute pramipexole for Madopar. This has to be checked.
No more than 0.18mg pramipexole and if you are suffering augmentation then I suggest you also eventually wean off this too, over a period of at least 3 months.
BEFORE anything else, I suggest increasing the pregabalin to at least 150mg once a day
If your doctor fails to consider these options with you I suggest you see another doctor. You can refer the doctor to the information in the links.
Here's a link to an article about augmentation which I hope is self explanatory
Note the sections on alpha 2 delta ligands and augmentation.
I realise this is a lot to take in. I think you need to consider it carefully.
Part two
It appears switching from 100/25mg Madopar to an equivalent dose of pramipexole would require an excessive amount of pramipexole, i.e. above the official UK recommended maximum dose for RLS.
However, whereas Madopar is very short acting, pramipexole is longer acting which may mean that you may be able to get away with less than equivalent.
I suggest you ask a pharmacist for advice on this, but 50/12.5 mg Madopar appears to ber equivalent to 4 X 0.088mg pramipexole. This is less than the "official" recommenmded maximum but greater than the safer maximum of 2 X 0.088mg.
It is inevitable that to improve your RLS in the long term, you may have to fo through a period of worse symptoms, I'm afraid.
A benzodiazepine e.g. Clonazepam would be better for aiding sleep than melatonin.
Melatonin is a hormone which regulates circadian rhythms including your sleep-wake cycle. You can naturally boost your melatonin levels by
1 - Ensuring you have exposure to full spectrum daylight for ate least two hours duing the day.
2 - You avoid light during the evening and night. Dim house lights and avoid using backlit devices 2 hours before bedtime, i.e. TV, laptop, smartphone, tablet etc. Some devices allow you to adjust the spectrum to lessen the blue element.
I noticed that I corresponded with you about this a year ago.
I'm sorry you've made no real progress. The medicines for RLS can be prescribed by a GOP, your GP can be informed by the links I've given you. Seeing a specialist who also may be ignorant of the recommended ways of dealing with RLS would seem a wasted effort.
Firstly I am so deeply grateful to you for taking the time and trouble to write such a comprehensive reply to me.
I saw a Consultant Neurologist Dr Paviour at St George’s Hospital on 13th November 2019 because I was not happy taking one Pramipexole 0.088 mg at 4pm and then one Madopar 100/25mg at about 8pm, although this did relieve my syptoms (after what I read on this site). I was also putting on weight and seemed to be hungry constantly.
I forgot to mention that I also have quite severe sleep apnoea and use a CPAP machine at night.
He recommended that I should discontinue the Pramipexole and trial Pregabalin, if that did not work to trial a small dose of Ropinirole immediate release (initially 250mg at night together with the Madopar.
At no time did he say that Madopar is addictive or causes augmentation.
I have checked my ferrotin levels and they are well up at 150+.
My doctor has said I should come off Pramipexole but has suggested I take one tablet of Pregabalin 25mg for the first week, two tablets the second week rising to three tablets afterwards. Of course needless to say one tablet didn’t touch my symptoms so I relied on Madopar for relief.
I shall now try 3 tablets of Pregabalin all at once but since my symptoms start at about 5pm I shall have to take the medication at 4.30pm or so.
Truly I feel let down by this Consultant of Neurology who obviously has no clue about RLS. Additionally when he saw me he had two other consultant neurologists in his room neither of whom made any comment on his recommendations. I can’t believe they hand out these medicines without an inkling of what they will do to people!
Hi, The advice to stop the pramipexole and increase the pregabalin seems sensible to me.
The ONE single signficant point about what you write is that you're expereriencing symptoms earlier in the day.
This is augmentation!
The best way to deal with this is to reduce and stop the DA, pramipexole. It's NOT a good idea to replace it with another DA ropinirole - same problem, augmentation.
It's sensible to increase the dose of pregabalin until it's effective, this would be at least 150mg and this may need to be kept up for a few weeks before you can expect it to be truly effective. It's best taken 2 - 3 hours before bedtime. In the meantime however, you will still be having augmentation.
Thus, you can't really expect any great imrovement until you start reducing the pramipexole.
You may be able to get away with halving the Madopoar for a few days, if you take it regularly. Then stop it. You do need to check this.
However, since both madopar and pramipexole can make changes to brain chemicals, which the brain gets used to, then when you stop these drugs, the brain has to get used to being without them again. This is dependency, which is not quite the same thing as "addiction". This is definitely the case with pramipexole.
You must not suddenly stop taking the pramipexole. If your doctor advises this then you cannot trust them. Stopping them suddenly is dangerous. In addition, it can cause serious withdrawal effects. It's now recommended, I believe, that you should slowly reduce the dose over at least 3 months.
I wouldn't start reducing it until you've been on the pregabalin at least 3 weeks.
A caution : I appreciate that you also suffer sleep apnoea (SA) and need a CPAP machine. SA is a factor in RLS.
I would imagine that your SA is "obstructive" rather than central, hence the CPAP. In that case there may be no problem.
However, do check, if your SA is "central" then pregabalin could make it worse.
It is inevitable that when you reduce and stop the pramipexole you will have withdrawal effects, these include a temporary worsening of symptoms and sleeplessness. To quote a cliche, things will get worse before they get better. Some people give up on it because of this. Things will improve, you need to take it slowly.
heres' a link to an article on RLS treatment which mentions all the things I've highlighted.
I sat up nearly all night with legs aching and twitching violently. I took 5 x Pregabalin 25mg at 5pm and then took half a Doxylamine 15mg to help me sleep instead of my Melatonin.
It was awful.
I might have to go back to Madopar - I don’t think I can bear it.
I know you said to wean myself off over a few weeks but I only take one Madopar and I can’t really cut a capsule in half, can I?
Hi Jeverleybane, you have a difficult problem with your meds, i am wondering if you email Dr . Buchfhurer he might give some advice to you,. He is a RLS expert in the USA and we often ask members to email him for his input on their RLS and med problems. You will find his email at his website rlshelp.org Manerva has given you lot of info and support and maybe he has further advice for you. Dr Buchfhurer is another source that might be helpful .
I was afraid you'd just stop taking the Madopar. It's dangerous! Luckily, what you experienced was only withdrawal effects. Withdrawal effects include a signficant worsening of symptoms and sleeplessness.
If you suddenly stopped taking the pramipexole, then you would have had the same withdrawal effects and hence felt the need for the madopar.
You can't rush impulsively into changing things, it takes time and you have to be careful.
Doxylamine is a sedating anti-histamine. Rather than helping you, this would have made your RLS worse!
If the Madopar is in capsules, no, sorry you can't cut them in half. I believe Madopar also comes in tablet form 50/12.5mg. Some tablets come in dispersible form, I guess you could dissolve them in water and only drink half of it.
Neither can you expect the pregabalin to work immediately, it doesn't do that. You can't substitute pregabalin for madopar overnight. They work in completely different ways. You may have also increased the dose too fast. It has to be increased in steps.
These are strong drugs which you can't just suddenly stop or start.
I'd say you need to consult your prescribing doctor,
The alternative I suggested, which is what I'd expected you to do, was to substitute pramipexole for madopar then wean off that. I have absolutely no experience of weaning off madopar not of switching from madopar to pramipexole, I hope your doctor can help you with that. I have only experience of weaning off pramipexole. It took me ten months.
However, once you're taking pramipexole and stopped the madopar, you can wean off the pramipoexole. You need to do this slowly over a minimum of 3 months. and it is possible to cut the tablets. I write this because it's possible your doctor doesn't know this.
It is best if you also do one thing at a time. A minimum effective dose of pregabalin is 150mg and it can take 3 - 4 weeks to work. If you try reducing any dopaminergic agent (madopar or pramiopexole) before the pregabalin has had chance to work, then withdrawals may also be worse.
It's also best to take it at night, 2 hours before bedtime. Taking it at 5pm sounds way too early. Pregabalin also has some side effects which may fade in a few weeks, these include drowsiness, dizziness and stumbling. Thjs could lead to you falling over, so taking it too early is also not a gooi idea becasue of that.
If you took it that early because you have symptoms earlier, this shows you probably have augmentation. This will be due to the madopar and is a good reason for stopping all dopaminergic agents - eventually.
You will need to consult a doctor because you will need appropriate prescriptions. Your doctor needs to know what you're doing. Any suggestions you get in this forum are just possibilties
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When you do wean off madopar or pramipexole you WILL get withdrawal effects, as you've already experienced. The idea of doing it slowly is to reduce their severity.
I would NOT follow any of my suggestions without consultng your doctor first. It would be irresponsible of me to offer any further suggestions other than consult your doctor and do not make any changes without knowing the consequences of what you're doing.
OK. Thanks. I understand I have to withdraw slowly.
My RLS has always started at about 5 or 6pm. I’m not sure it is because I am augmenting. It’s always been that way.
I think I will swop Pregabalin for Pramipexole and also take Madopar until the Pregabalin has time to kick in, then I’ll see if I can wean off Madopar.
I’ll also contact my doctor in the meantime to see if I can get Madopar in pill form and higher dosage of Pregabalin as mine are only 25mg.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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