Hi I am new here and at rock bottom. I've been prescribed Sifrol for Restless Legs Syndrome for, at a guess 4-5 years. During this time I have developed a gambling addiction which has worsened. Issue is I also have anxiety/depression and medicated for this also, this condition has not stemmed from the Sifrol use or the medication for treatment.
My issue is; I grew up with a father who had a gambling addiction and it was NEVER going to be me!
My gp basically threw me on it, no discussion of such side effects and no mention of any such thin during this whole treatment time. Its only because I have now stumbled accross information indicating Sifrol has caused such issues for others in the past.
I am so angry and hurt that on top of managing my mental health with the same Gp I have been suffering unduly from the Sifrol. I have never mentioned my gambling due to shame and never knew it may be related to the medication.
I feel like seeking legal action! Anyone else been through this?
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Welcome to the forum. You will find lots of help, support and understanding here.
As you found out dopamine agonists like sifrol can cause ICDs (impulse control disorders) like gambling. You need 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 pramipexole, reduce by 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 pramipexole although it won't be fully effective until you are off it for several weeks. After you are off 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, oestrogen (estrogen) including HRT, 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.
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.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
None of the doctors are close to you. But will generally do telehealth appointments. Professor Brendon Yee in Sidney recommended by Amrob is the closest.
Dr David Cunnington( Sleep Specialist) Queensland recommended by Retiredlady She consults via zoom. He is up to date and prescribes opioids.
We do have a number of members from Australia so you could make a separate post asking for a knowledgeable doctor in Tasmania.
The problems with pramipexole and other dopamine agonists are recognised in Australia: the following extracts come from an article by Brendon Yee et al in the RACGP's 'Australian Journal of General Practice' from last September: "Dopamine agonists are effective in managing chronic persistent RLS... Once considered first-line therapy, expert guidance suggests that the alpha-2-delta ligands should be trialled first, unless there are significant contraindications. This recommendation comes from the increased recognition of augmentation and impulse control disorders that might complicate the use of dopamine agonists."
"Impulse control disorder manifests as pathological gambling, hypersexuality or compulsive shopping, with a rate of occurrence between 6% and 17%, commencing on average nine months after commencement of the dopamine agonist."
I'm not sure how long this has been widely known in Australian medical circles but, depending on that, it's possible that if your doctor didn't warn you about impulse control disorders you may be able to sue for negligence.
My sleep specialist (in Australia) warned me of potential impulse control issues in relation relation to pramipexole in around 2014. Journal articles/prescribing information have been available online for a long time now, so geography is no excuse really!
JenniferBut used him and said he knew enough that she augmented but didn't know enough to not to take her off cold turkey and told her to wait a week to start gabapentin.
Sorry, not sure what this applies to? I flagged Amrob's comment that his Oz sleep specialist warned about ICDs around 2014, (indicating that the problem was known about and that KPPA's doc should have warned her).
Ah. As Jools said at the time, Yee appears to follow a brutal quick withdrawal and washout method akin to that proposed by Earley at JH.
Joolsg : you refer to "new Australian RLS guidelines have just been released" in your Reply below. Is that something different from the RACGP/AJGP guidance that Yee and others published last September?
I saw Associate Professor Yee in late February this year. I have never been on DAs, and so can't comment on withdrawal from them. I can however confirm that he is not adverse to recommending DAs even when it is not an end of life situation. I was asking for something other than Lyrica, which has left me with 15 or 20 fewer points of IQ, even on a low dose of 75 mg. He recommended I try DAs, even though, as he told me, he had noticed that some people augment on them (about 30% in his experience). I expressed my shock and dismay that he would recommend a product which can leave a patient with augmentation, DAW, and/or ICD. He back-pedalled and suggested that I try Targinact, once I had come to terms with the possibility off unpleasant side effects. But the subscription for Targinact would be not be written by him but by my GP, in consultation with him and a Pain Specialist, a process he referred to as 'holding each other's hands'. This is done to get around the public health phobia surrounding opioids. Dr Yee was a very nice man, very sympathetic, and I was very disappointed when he recommended DAs. So the take-away from this is that you must stand your ground, and push for what you want. And if you decide to see him, you may need to take a flight up to Sydney and also see a pain specialist at the same time. If your GP is educatable too, so much the better. The other alternative is to take a flight up to the Gold Coast in Queensland where Shumba and more recently another Queenslander found a satisfactory RLS specialist (I can't recall the name of the specialist).
Disappointing in that you saw Yee after publication of the RACGP paper that he co-authored which concludes:"Recent evidence supports a move away from dopamine agonists (pramipexole, ropinirole) as first-line agents due to the significant risk of augmentation, as well as impulse control disorders. Alpha-2-delta ligands have been shown to be equally effective, although careful patient selection is required."
And that in the body of the paper just before the conclusion it says:
"Opioids might be useful for refractory RLS, defined as persisting symptoms despite therapy. This might occur due to the natural history of the condition, with a reduction in the efficacy of the first-line agents, augmentation or drug-associated side effects. Abuse potential is low in patients without a history of substance abuse, although due to the well-known side effect profile of these high-potency agents, opioids should only be used in treatment-refractory cases. Low-potency agents should be trialled first, but most patients will eventually require higher-potency agents such as oxycodone/naloxone, which has the greatest evidence supported by data from randomised control trials. Patients should be referred to a sleep physician or neurologist prior to the commencement of any opioids."
That mirrors the UK. Neurologists are still prescribing these poisonous drugs and kidding themselves that augmentation rates are 'low'. Read any help site or FB group and it is full of people on DAs who are in denial.
Experts in the USA, who see thousands of RLS patients every year, now believe everyone will augment.
Very common. Up to 38% will develop ICD.In the USA and here in the UK there have been thousands of cases against doctors for failure to warn.
As you're in AUSTRALIA, contact a lawyer asap. If Australia still follows UK law, you have 3 years ( from realising Sifrol caused the gambling) to bring legal action against your doctor. I posted 2 weeks ago about this. A UK man gambled £100 000 and tried to kill himself. I also posted about a UK tv producer who wants to make a docudrama about this. Look at my posts.
You have to get off this poison now.
Follow SueJohnson advice.
Also. All anti depressants make RLS much worse. Trazodone and Bupropion and Vortioxetine are safe.
As you now realise, doctors know zero about RLS or the meds used to treat RLS. Tasmania is a difficult area as there are no specialists. The new Australian RLS guidelines have just been released.
Yes. Buying things I didn’t need and eating when I wasn’t hungry. I’ve weaned myself off it for those reasons, and those addictive traits have gone. I did mention it to my GP but she wasn’t concerned.
If you have a drug side effect reporting scheme, please use it.ICD rates are probably around 50 -60 % but most patients AND doctors either don't make the link OR fail to report.
In the UK, you report via Yellow Card Scheme. In the USA the FDA have a drug side effects report site.
Until we all report side effects, the scale of the problem is unknown and doctors keep prescribing.
I can relate. Online shopping for items I didn’t need. Finding it hard to resist cravings for food and increase in alcohol use. I’m yet to get off Sifol but know I need to.
Please report as a serious side effect AND take legal advice. If doctor didn't warn you, you can sue for negligence in UK, as long as you take action within.3 years.
hi there. While you’ve got such excellent advice and help here by fellow forum members, I just wanted to sympathize. I also grew up in Las Vegas with a father with a gambling addiction, so I get it.
When times were good, they were good! But when they were bad…
Good luck! So devastating that your life is turned upside down when a simple (well, maybe not so simple) addition of iron could have impacted your RLS with mostly zero side effects. It is all I ever used to control and eliminate my severe RLS. Gambling addiction is reported in patients with absolutely no history of gambling.
From Wikipedia about Ropinerole (a similar DA): "In November 2012, GlaxoSmithKline was ordered by a Rennes appeals court to pay Frenchman Didier Jambart 197,000 euros ($255,824); Jambart had taken ropinirole from 2003 to 2010 and exhibited risky hypersexual behavior and gambled excessively until stopping the medication."
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