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04-13-2011, 04:30 AM | #1 | ||
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Junior Member
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Came across this thought provoking article on Big Pharma and offlabel uses of DA Agonists like ropinirole: IS RLS real or is it a contrived exaggerated disorder to allow cheaper FDA approval of DA agonist preparations that will then be subtly marketed for off-label use in PD without proper approval data on actual use in Parkinson's patients?
Open-mindedly seek opinions on this controversy. Dopadoc |
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04-13-2011, 08:53 AM | #2 | ||
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Senior Member
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Is this the article you are referring to?
http://www.bnet.com/blog/drug-busine...e_skin;content I think it exists, but I also think the drug companies do not know or care if it exists, what it is about, or what difference their latest pill will make. In this case, they are hoping PWP will chase after their restless - legs drugs, off-label, with no valid research. These decisions are not made by scientists or doctors. It's the sales and marketing branch says to the production branch, "Can you come up with a pill that we will sell?" |
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04-13-2011, 09:20 AM | #3 | ||
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In Remembrance
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I very occasionally have had restless legs pre -parkinson from the time I was a kid. It is torturous in a way that is hard to explain. You almost have to get up and walk around in the middle of the night. I didn't have it often enough to think of it as a disease. But i know others who would call it a disease and are on mirapex, requip, even sinemet for it.
I really haven't answered the question; just assumed restless leg was related to pd somehow. I don't get it anymore so is it a precursor to pd (in some people?) I know how it feels so don't begrudge them having something that relieves it, but wish it wasn't the agonists. Anyone know the side effects of neurontin?
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paula "Time is not neutral for those who have pd or for those who will get it." |
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04-13-2011, 09:23 AM | #4 | |||
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Wisest Elder Ever
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I think restless leg is a real entity.
For what it is worth, I know one sleep specialist MD who used Sinemet off label for his patients 10 yrs before the "agonists" appeared.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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04-13-2011, 10:37 AM | #5 | |||
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Senior Member
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one small Requip is needed to calm my restless legs before I can sleep - the only thing that works; I am a veteran of this stuff after 12 years of experimentation
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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04-13-2011, 10:49 AM | #6 | |||
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Wisest Elder Ever
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What I think is the most egregious off label use today is Seroquel (a potent antipsychotic with terrible side effects) being pushed to internists and GPs for patients with simple insomnia!
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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04-13-2011, 11:26 AM | #7 | ||
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Junior Member
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Thanks to all for responding.
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04-13-2011, 03:02 PM | #8 | |||
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In Remembrance
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My initial reaction was that it was most unusual for such a widespread disorder to have escaped notice until relatively recently.
My second reaction was UNLESS it is a relatively new disorder. My third rank of thoughts was that, while I don't have RLS now, I can remember as a child having a similar problem at bedtime that my mother would soothe with rubbing alcohol. I was a preclampsic (sp) baby. More interestingly, I was low on Vitamin D, had rickets bad enough to require braces for awhile, and was fed cod liver oil on the orders of an old country doc. Perhaps RLS is, indeed, a new manifestation of our relationship to the sun and Vit D.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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04-13-2011, 03:06 PM | #9 | |||
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In Remembrance
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1. Gen Hosp Psychiatry. 2010 Mar-Apr;32(2):228.e1-3. Epub 2009 Apr 15. Restless legs syndrome with carbamazepine-induced osteomalacia: causal or casual association. Prakash S, Bhanvadia RJ, Shah ND. Department of Neurology, Medical College, SSG Hospital, Baroda, Gujarat 390001, India. drprakashs@yahoo.co.in Restless legs syndrome (RLS) is a sensorimotor sleep-related disorder which can be idiopathic or secondary. Secondary RLS is associated with a variety of conditions. Here we report a 16-year-old girl with RLS secondary to vitamin D deficiency (VDD) caused by chronic administration of carbamazepine. We also speculate on the possible mechanisms for the development of RLS in patient with VDD. PMID: 20303002 [PubMed - indexed for MEDLINE]
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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04-13-2011, 03:14 PM | #10 | |||
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Wisest Elder Ever
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Restless leg symptoms also come from low iron status, and poor magnesium intake.
But there are some hard core patients who have it still when those things are fixed.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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