I need advice because I am not sure that my next step is the right step.
Here´s my story in short.
I am 56 years old, and I have had Restless legs (WED) for over 25 years, I think. I suffer from severe RLS (high score in test). 2007 I started to take Sifrol (pramipexol) 0.18 mg, and it helped me. For some reason, my doctor raised the dose to 0.35 mg, and at that time I was not aware of the risk of augmentation (and not my doctor either), my doctor wasn´t a specialist only my family doctor. This was 2009.
Then I have had Sifrol 0.35 mg for ten years, and it has worked well. In the beginning of last summer (2019) I felt that the symptom come back and the medication didn´t work. It became worse for every week, and I google and realized that this was augmentation after using Sifrol on a high dose for over ten years. I found some advice (thanks google) that the right way was to reduce and divide the dose into several occasions. I think it was the worst summer of my life, and my summer holiday was crashed. I remember being in the UK (Cornwall), and I didn´t sleep a minute for five nights, I mean this, not a minute.
After a couple of weeks later, it started to get better. I reduce the dose from 0.35 to 0.27 mg (1 and a half pill) on three different occasions. It has worked okay during the last year, but during a previous couple of weeks, it feels like the symptoms coming back.
This week I had a meeting with my doctor (family doctor, not a specialist), and he suggested to switch to Gabapentin, (one pill in the morning, one at night. Maximum 3 pills a day).
Before I raise my questions, some of you wonder why I didn´t go to a specialist? Well, I wish I had, but I tried many times to get a referral to the specialist without any luck. I live in Sweden, and it´s almost impossible to get help where I live. The queues are so long they refuse to receive more patients. I have offered me to go to any clinic in Sweden, but without success (high taxes, no service).
When I am reading some of the threads on this site, I hear that some of you are happy with Gabapentin, some not. In my case, if it would take 3-4 weeks before it starts working, I can´t cope with that because my symptoms are so bad and being without sleep for 3-4 weeks! Not possible.
What´s your experience? Is Gabapentin the right medicine for me? How long time before it reduces the symptoms? Can I take Sifrol at the same time (reduced dose)? Should I stay with Sifrol and reduce even more? Any other medication?
I have the medical at home, but I am afraid to take the next step. Thankful for any help,
Regards,
Tomas
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tomashagg
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I gave up on Gabapentin because I didn't experience any change even after 4 weeks. I am currently on the Neupro patch. This is another DA, but it is the one with the least likelihood of augmentation. It works well for me! That being said though, trial and error is needed for everything and RLS is no different.
Brands are imortant with gabipentine . Capsules for nerve repair. Pills for RLS. Another brand for shingles (US)> Do you or your doctor know the difference? Google!
Never heard of such a thing and I’ve been on Gabapentin for years!
Hi, a few points.
When you reduce the dose of pramipexole you will suffer withdrawal symptoms. The faster you reduce, i.e. the bigger the reduction in dose and the shorter the time between reductions then the worse the withdrawals will be. Usually this is a worsening of the symptoms and - - - sleeplessness
Sorry, five nights sleeplessness is not unusual.
Gabapentin, as you've read, works for some people, i.e. it relieves the RLS symptoms without causing intolerable side effects.
You won't really know if it's going to work for you until you stop taking the pramipexole. It's a matter of trial and error.
Clinical studies demonstrate it is effective which means that statistically speaking it does work. This could be interpreted as meaning "most" people. Otherwise the statistics aren't showing that there's a significant difference between people taking it and people taking a placebo.
You can take pramipexole and gabapentin at the same time.
If your doctor is receptive to information you give him/her, from authoritative sources, you won't necessarily have to see a specialist.
If you decide you wish to try gabapentin and stop the pramipexole, then I suggest the following -
Start the gabapentin 3 - 4 weeks BEFORE reducing the pramipexole. You're right, you can take both at the same time and it also may take this time to start working. It also gives time for the initial side effects to fade. These include drowsiness, dizziness and stumbling when walking.
Gabapentin is the generic medicine and it can be used for epilepsy, nerve pain, shingles or RLS. It may be different in the US where there are variations and you may see folks from the US writing there is a particular version or brand used for one thing and another version for another thing. Shingles causes nerve pain. Gabapentin does not treat it, only the symptoms. Gabapentin does NOT repair nerves.
One particular version gabapentin enacarbil is not available in the UK. Gabapentin here is just gabapentin and it works fine for me.
For epilepsy and nerve pain, the daily dose is split in 3, morning, midday and night. These conditions occur at any time of day.
RLS tends to occur mainly at night. Really you only need gabapentin once a day, at night, 2 - 3 hours before bedtime. If you take it during the day, you will get side effects during the day e.g.fall over or crash the car! When you most need it, at night, there won't be enough in your blood stream.
If your RLS currently happens in the day, then this is possibly augmentation and the best thing to for that is to reduce the pramipexole.
The starting dose, i.e. the first dose you take, is 300mg. You can increase the dose in steps of 100mg a day, or 300mg every 2 - 3 days. The minimum effective dose is 900mg. Anything less may not work.
Due to the strange way in which this medicine is absorbed, once you get to 600mg 2 hours before bed, as you further increade the dose take the rest 3 hours before that.
THEN start to reduce the pramipexole v e r y s l o w l y. Reckon on it taking at least 3 months. For me it was 10 months.
Sifrol tablets, I believe comes in different strengths than generic pramipexole found in the UK. I suggest you get hold of the smallest which you might know as either 0.125 mg (salt), or 0.088mg (base). It's the same thing, I call it 88ug, it's less typing!
I suggest you reduce the dose in steps of 44ug. I.e. cut them in half. I wouldn't reduce the dose in anything less than every two weeks. Symptoms may get worse at first then settle. If it takes longer than 2 weeks for them to settle, I suggest waiting 4 weeks.
Finally when get down to 44ug try cutting the tabs in quarters and reduce to 22ug for a few weeks. Counterintuitively, the lower tbe dose, the longer it takes to reduce it.
Withdrawal effects will be at their worst 24 - 48 hours after stopping altogether.
Of course, if you find you've lowered the dose to where you're satisfied with the result, you can stop reducing, but while you're at it, may as well go the whole way.
Some people if they're working, take a holiday for a few weeks as sleeplessness is common. It's something you have to go through and it is worth it.
Your doctor may prescribe something to help you sleep, a benzodiazepine can help or Zopiclone. Neither should be taken long term!!!!r
Some people find a n opiate helps with withdrawal effects. Not ideal, but if your doctor won't prescribe one, codeine might help. You can buy paracetamol and codeine witnout a prescription. Don't exceed the stated dose, the paracetampl is fangerous if you take too much.n
Hete's a link to something you could show your doc. It was wriiten by a professor of neurology and RLS specialist and published in Oct 2019, so it's fairly up to date.
In reply to Manerva -I read all I can of your answers to sufferers of RLS, I took to heart your recommendation to stop Rotigtine (3mgs taken for approx. 10 years and previously Ropinirole for many years) as I am clearly experiencing augmentation. You are my hero, giving your time/advice to help sufferers. I am in the process of stopping the patch (half way). I have noticed day time is now getting better but like Tomashagg, I have nights without any sleep. You referred to an article here (UptoDate) and as I have severe RLS I noticed the quote -"For patients with very severe RLS, comorbid depression, or obesity/metabolic syndrome, we suggest initial therapy with a dopamine agonist (pramipexole, ropinirole, or rotigotine) rather than an alpha-2-delta calcium channel ligand" D.A. still being recommended for people like me. I want to give this information to my Doctor and the article looks perfect, except he will refer to this. I am dealing with my augmentation without any medical help, my doctor doesn't understand and my hospital is out of commission. I intend to ask my Doctor for Pregabalin (an alpha-2-delta calcium channel ligand) once completely weaned off Neupro, would you say this is advisable? I will soon run out of Tramadol and I am told I may not get a repeat. I am following a path but unsure of how it will all end. I sympathise with Tomashagg, no sleep is dreadful, particularly when the meds being taken are working against you. I wish you lots of sound sleep and good luck Tomashagg.
Correct the article suggests "initial" therapy for someone with very severe RLS, comorbid depression etc be a dopamine agonist. However, you have already had "initial" therapy. If you've already had augmentation then continuing on a dopamine agonist or switching from one agonist to another are not good options.
Switching to an alpha 2 delta ligand is a better option for someone who's suffered augmentation. It's not perfect by any means. If you can get a continuing prescription for an opiate as well, that would help.
The question of whether anyone's RLS is "severe" or not is a difficult one.
If you'd asked me if my RLS was severe in 2009 I would have said without doubt. However, this was following a course of a SSRI antidepressant which neither me or the neurologist who prescribed me a DA knew was a trigger for RLS. If I'd known and given this effect time to wear off, perhaps my RLS would have returned to being mild, as it was before. SO, is my RLS severe or not.
The DA worked for a few years. During those years, was it severe or not? Then I suffered augmentation, it became severe again. Now I've weaned off the DA, taking gabapentin and symptoms are rare. So is it mild again?
It seems in my case I may have had an underlying "mild" RLS, triggered worse by the SSRI, improved by a DA, made worse by a DA and now more or less returned to how it was before it was first triggered.
However, DAs do apparently cause permanent damage and my current, rare and mild symptoms when they occur are not just the urge to move and not just in my legs.
So, I'd say in your case, it may help to look at all the non-pharamacological measures, (identified in the article) if you haven't previously done so. That is, particularly iron (ferritin) and other medications.
It's just a thought and may be of some help. The article is written by an RLS specialist, not a psychiatrist. There are diffeent kinds of depression, different levels and different treatments. For many, there are psychological therapies that can be just as effective and if not more so in the long term.
Many RLS sufferers appear to suffer comorbid depression, but often this may be due to the RLS rather than a separate morbidity. It does no harm then, to seek a pyschological therapy for depression and avoid antidepressants.
It's too simple for a RLS specialist to say use a DA if you have comorbid deprssion, it's more compliacted than that.
As regards pregabalin, if you do decide to go ahead with this and reduce the rotigotine, I suggest you start the pregabalin a few weeks before reducing the neupro any further. This may not entirely eliminate withdrawal effects, but it definitely helped in my case. It also takes a few weeks to work, so if you were to wait until you stopped the neupro before starting the pregabalin, there would be at least two weeks when you would be having DA withdrawal effects AND no replacement.
I beliee the article recommends this.
It may not be possible to totally avoid withdrawals, you can only reduce them by weaning off the neupro slowly, that is, leaving weeks between each reduction.
What works for one might not work for another. I can sympathise with you I have been there myself. I was on gabapentin but it was only effective for a short while until symptoms returned. I currently take pramipexole. I find that much better. The gabapentin had strange side effects. If I take pramipexole with 2 paracetamol I will sleep the night. I have had rls since I were 4yrs old and I am now 52.use what is best for you. It is trial and error. I also watch what I eat as I know certain foods have a very significant impact. Good luck I Hope you find success soon x
I hope you do find some help soon. I can't comment on Sifrol, never having taken it. I have been on Gabapentin, ( 3 doses of 300mg most days, occasionally 4 doses ), for over 6 yrs.
I found it gave me relief almost immediately and couldn't live without it. For me, it has been a godsend - I do hope it works for you.
Thank you, everyone, for all support and a special thanks to Manerva. I will take your advice and discuss it with my doctor. I suspect that it wasn't that easy that he told me, switch from one day to another. But before I try Gabapentin, I think I will have one more try with Sifrol for a couple of months, because I have nights when it works okay. I'll also go back to eating fewer carbohydrates and workout more that I use to do (which helps). But when you have had a couple of bad nights, it's challenging to keep ut the good spirit. When I get a couple of bad nights, the symptoms increase the next night so that it will be a vicious cycle.
Last summer, when I got the augmentation, I stood alone without help and almost got panic. During 4-5 weeks, I slept approximal 2-3 hours per night/day, ending up with my peak week with five nights without sleep. If I know what's around the corner, it will be much easier to handle nights without sleep.
Great that it apparently works for you. Wonderful. I wish it did for me. I tried it long and seriously before I even knew it was RLS I had. But no effect. At all. Just draining my purse.
Which goes to show, we are all different. And what works for one may or may not work for others.
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