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08-13-2007, 07:56 AM | #1 | |||
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In Remembrance
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At least they are paying attention, but I do wish they would shake off the damn lab rat mind set. It would have been nice to have been asked for comment or something, now wouldn't it?
1: Pharmacoepidemiol Drug Saf. 2007 May 8; [Epub ahead of print] Drug related problems with Antiparkinsonian agents: consumer Internet reports versus published data. Schröder S, Zöllner YF, Schaefer M. Institute of Clinical Pharmacology, Charité University Medicine, CCM, Berlin, Germany. PURPOSE: There is currently a lack of detailed information concerning drug related problems in the outpatient treatment of Parkinson's disease. METHODS: Problems associated with drug treatment communicated anonymously in Parkinson's disease online forums were therefore retrospectively searched and documented for 1 year. RESULTS: Based on postings concerning 12 drugs for the treatment of Parkinson's disease, a total of 238 drug related problems were identified and categorised using the Problem Intervention Documentation (PI-Doc). Of these, 153 were adverse drug reactions. Adverse drug reactions associated with the skin were relatively common, but central effects such as cognitive or psychiatric changes, effects on the sleep/waking system and other problems like headache and dizziness accounted for the highest percentage of adverse events. A comparison with data from scientific literature revealed a number of differences. This means that an analysis of online forums detected a number of drug related problems that were otherwise largely invisible. These were mainly associated with the qualitative aspects of treatment such as medication handling, dosage and individual problems concerning adverse events. In addition, the described method of identifying and classifying drug related problems in Internet forums may also be seen as a contribution to the international discussion about consumer reports and pharmacovigilance. The information about adverse drug reactions given by Internet users can be seen as a valuable adjunct to clinical trial data and as being very timely with regard to the event itself. CONCLUSION: Online forums may be considered as a suitable source of observational information to complement data from randomised clinical trials. Copyright (c) 2007 John Wiley & Sons, Ltd.
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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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08-13-2007, 08:32 AM | #2 | |||
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Senior Member
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yep - i've always figured that some drug company folks come & lurk.
thanks for this.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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08-13-2007, 09:44 AM | #3 | ||
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Junior Member
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hey! maybe i could get a job reading this forum!
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08-13-2007, 09:53 AM | #4 | ||
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In Remembrance
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Haha good one oyster.
Originally, it was a no no in the medical community to take anyone seriously on the internet. Ten years has turned it around. paula
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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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08-13-2007, 12:59 PM | #5 | ||
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Member
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A Neurologist suggested to me recently that it was widely suspected that some drug companies were using PD Forums to promote their drugs through Postings by planted members. I know this Forum is closely moderated and administored but not all are!
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08-13-2007, 01:18 PM | #6 | ||
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Yappiest Elder Member
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Quote:
most are pretty obvious. we catch the spammers and such pretty darn quick.
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08-13-2007, 02:47 PM | #7 | |||
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Senior Member
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Woo hoo!! You guys are GOOD!!
thanks!
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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08-14-2007, 01:58 AM | #8 | |||
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Member aka Dianna Wood
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Are they monitoring to improve their product or to use the information to produce more copycat drugs that may not have the forums' ratings as too many side effects? I have no trust in pharmaceutical companies. For those companies reading this, if the survey read :
How would you rate our pharmaceutical industry in terms of effectively producing innovative products, on a scale of 0 being no trust and 5 being very trustworthy, My responce would be a big fat 0. How could we improve? Simple, first no lobbying of congressional persons either Federal or State, Stop Advertising drugs on TV, ( do you really think the public is stupid enough to believe the actress who while talking to her friends listing all potential side effects of a drug didn't memorize the lines you wrote for her?) Generally after hearing the side effects, your product is a turnoff. No more cover ups by releasing research information about new products on a "What the Public Needs to Know" while leaving out the some serious side effect to rush your product to the market. Stop using patients for research only to look for information or responces from the participants proving your brand name drug is better than someone elses that does the same thing. This type of research does not help the patient to derive information about the disease under study, but is strictly for marketing purpose. Don't hand them your typical research contract stating the patient should not expect to receive anything, the research is to be used for the interest of science. Try the truth for a change. Tell the patient it is for marketing purposes and offer him a cut of the increase in revenue the study makes. Finally, under no circumstances should you even contemplate getting patents on gene information found from patients volunteering blood. The blood they donated is nature and cannot be patented. The intention of the patient participating in gene research is to benefit all mankind, not to give your company the right to buy the rights to the information and patent it. Patents of gene lines will only slow the research process and empower the larger drug companies to squash the growth of smaller independent research by not allowing them to research a gene line which may cause a secondary effect on another disease. Got It You Lurkers? Vicky |
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