PLEASE PLEASE be aware of the side effects of this drug. My husband had been taking it for approx 7 years and then the behavioural disorder started about 4 years ago (although we didn’t realise that this was due to the drug). Two weeks ago after gambling over £50000 in the past years he went to the garage and hanged himself . By some miracle, and I mean a miracle I heard the noise and with help saved him and I still don’t understand how or that I still have him with me. As you can imagine we are all traumatised , in counselling and I have made it my mission to change the way that dopamine agonists are prescribed. I have contacted the pharmaceutical company, NHS , Police and my husband is approaching Gamblers Anonymous with our findings. The side effects (which patients have NO resistance against ) include compulsive gambling, hyper sexual activity including deviant sex, compulsive buying and eating. All of these disorders are done with no thought to themselves, family or others. Relationships are broken, financial ruin and even arrest due to illegal sexual activity or stealing for funds to continue could occur. I want/demand that these drugs are issued with a verbal and written warning and also the patient signs that this is understood and will be followed up periodically (not only could this save lives and relationships but ensure that no legal action can be taken against doctors, pharmacists etc.). If you or a family member have suffered any of the above please post so I can push this forward
Thank you for reading and I hope this helps anyone in the same position .
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Paul2905
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I am so sorry about your husband and glad you were able to save him. Yes some people on this forum are attempting to do this and others like myself are warning people who are starting dopamine agonists and advising them how to get off them. They are no longer the first line treatment for RLS and should never be prescribed for that.
For your husband whom I assume is still suffering from RLS: When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. He should have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and his transferrin saturation to be between 20 and 45. If his ferritin is less than 100 or his transferrin saturation is not between 20 and 45 post back here and we can give him some advice. He should ask him to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks to be fully effective. Assuming he has been off the pramipexole long enough that his symptoms have settled, after the 3 weeks he should increase it by 100 mg (25 mg pregabalin) every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. (He doesn't need to split the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 pregabalin) daily." If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin (OK for pregabalin) as it will interfere with the absorption of gabapentin and he shouldn't take calcium within 2 hours for the same reason (not sure about pregabalin). Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it as his doctor obviously does not know much about RLS or s/he would never have started him on pramipexole Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, 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, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If he is 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 any other health conditions your husband has.
OMG. I am so sorry to hear about this.We warn about these drugs every day.
RLS UK is trying to force the medical profession to teach GPs and neurologists about the dangers of Pramipexole, Ropinirole and the Neupro Patch.
Please contact a lawyer. There have been several successful cases against doctors who prescribe these drugs and fail to warn about ICD. RLS UK has discussed the possibility of taking legal action against the doctors who continue to prescribe these dangerous drugs without warning of ICD and augmentation or without revie patients regularly.
Please do consider legal action.
I attach links to the Yellow Card Scheme. Please report what has happened.
I attach links to legal cases.
I am so sorry this has happened, but not in the least surprised.
I hope your husband is now getting help to get off these dangerous drugs and onto safer treatment. Iron infusions and pregabalin are now first line treatment amongst experts.
Thank you I did contact a top lawyer but as they would want to take action against the doctor (who my husband has known for years) and nit the pharmaceutical company I don’t think it will ge happening. . The doctor us aware if the action I have taken in contacting the pharmaceutical company, nhs, and police due to behaviour disorder in this drug. He is now contacting other patients and pharmacy (so one step in the right direction ) the law suits in America and Canada are massive and millions have been paid out - good god don’t they learn I just want a warning, an understanding and follow ups !!!! My husband when given clonazepam instead went good turkey on pramixipole - sure he’s suffering anxiety etc from this and the trauma that had affected us all
Cold turkey from Pramipexole can kill.I honestly despair.
The RCGPs dismissed my campaign to have RLS taught to GPs, saying they would know to look up side effects of dopamine agonists and to do blood tests.
Your husband is yet more proof that GPs need teaching URGENTLY.
Sadly, until doctors are sued, they will continue to treat RLS poorly and continue to prescribe these dangerous drugs. I understand it is difficult as your GP is a friend, but he should have educated himself. A simple google search of Pramipexole shows Impulse Control Disorder and augmentation.
You won't be successful against the drug company because they changed the meds leaflets to include information about ICD and augmentation.
The withdrawal must have been HELL.
Please watch out for DAWS, dopamine agonist withdrawal syndrome, which causes anxiety and depression.
Many of us who have been through withdrawal from these drugs find that most other drugs don't work for us.
Many of us are taking methadone or Buprenorphine, low dose opioids that work well for refractory RLS.
Do post if his RLS is still moderate to severe. There is help.
I'm really sorry to hear what you and your husband have been through.
I agree, many medications -including pramipexole - are prescribed far too freely.
When I took pramipexole 10 years ago, I do recall being warned of the various risks associated with this medication. But I was so desperate for sleep that I most likely minimised the risk in my own mind. I do wonder how many people have the risks explained yet think 'that won't happen to me'. Fortunately I didn't develop any compulsive behaviours but I know people who did.
I'm not sure how it works in the UK but here in Australia, reporting these adverse effects to the drug oversight body is probably the most effective approach.
Is anyone really warned and that it may take weeks, months, years etc before it starts and that augmentation may happen when increasing the dose - making the condition worse. Hopefully you have not encountered any side effects
thank you so much on researching the compulsive behaviours it is shocking and horrific. I have contacted the pharmaceutical company and I believe there is also a telling card system for reporting drugs . I do agree that most people ignore the warning leaflet to get relief and when and if they get side effects they don’t relate it to a drug they have been taking for years. That’s why I believe doctors should periodical follow up and ask about these things . People are not coming forward due to shame and embarrassment . Thank you again I appreciate it.
I am so sorry to hear what your husband and family have been through. Can I ask how long has he been off Pramipexole and does he still have the urge to gamble? The telling card is the Yellow card.
He has only been off them for just over 2 weeks and the gambling urge gas subsided. He did it cold Turkey which was totally wrong as this can kill but I see a change - anxious, irritable, depressed I’m putting it down to withdrawal but maybe to do with what happened
I am guessing it will be a combination of the two ,I felt low when I came off Pramipexole it was a nightmare withdrawing .He will need time and tlc to get over his ordeal .My first husband had a gambling addiction ( he wasn't on DA) and it totally wrecks lives .I am glad your husband has you to support him .Best wishes to you both Pipps x
This was recently revealed as a contributing factor in Robin Williams suicide. The wikipedia entry for Requip (similar DA drug)...
"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."
hi thank you I have been trawling the internet for the last two weeks and there are millions been paid out in America due to the effects. This is awful but one woman could not leave the casino to go to the toilet and defecated and urinated where she sat, retired policeman lost 260000 dollars and it goes on. As far as the sexual hyper activity goes one man went home and had sex with the female family dog, there is also a site where men are talking about taking the “prami” for demonic sex and talking about wanting depraved sex or sex with underage girls, a woman also bought a caravan to have sex with random nen ti try and satisfy her obsession. The more you research the worse it gets. I am sorry to put a small part of my findings on here but this is why I NEED to make people doctors, pharmacists, patients etc aware that these disorders may start slowly or after a long period of time . The effects on the patients, families are devastating and how many people have been charged with illegal offences due to funding their disorder.
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