Parkinson's Disease Tulip


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Old 07-04-2010, 09:23 AM #1
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Default Blame game and alternatives

Quote:
Originally Posted by soccertese View Post
i'm not absolutely sure but i think the problem that i see for companies developing new pd drugs for YOPD'ers is the FDA won't approve them unless the work much better than the current industry standard. so a new dopamine agonist has to be better than mirapex or requip.
i was in a phase3 trial by PHARMACIA for a new agonist called sumanirole. in the entire county where seattle resides they FOUND 3 VOLUNTEERS. The 1st part you got sumanirole, placebo or requip. that progressed to the open labell trial where everyone got to dose up to an effective dose of sumanirole. my pd was very mild but the sum. worked for me with no side affects, in the 1st part i assumed i got requip because of the side affects. what happened? the trial was cancelled. no explanation. PHARMACIA had been bought out though.

blame the drug companies all you want.
I also blame us for not getting our butts into clinical trials. However, there is some sort of obsession in having dopa naive PWP in trials- pharmas only want the mildest of PD manifestation in their trials. They clearly avoid mid-stage disease and advanced disease PWP- why do you think that is?

Further, why don't our PD orgs begin a newly diagnosed patient education campaign to recruit newbies for clinical research?

There are many more potential better treatments than dopa stimulation. One vastly undertargeted area is Acetylcholine antagonists and allosteric modulators. The latter by Addex has huge potential as it controls dyskinesias. If I am not mistaken these might still be tested against agonists because the purpose is to compare efficacy not simply to improve agonists already on the market. Does anyone know if treatments targeting other receptor points are tested differently? Or do they all have to be in the same treatment family?

Laura
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Old 07-04-2010, 09:57 AM #2
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Default An interesting project ?

How about a registry of treatments that promised miracles and then just disappeared. Not disproven, just never heard from again? Sort of a "What ever became of...?" list.

Methylene blue?
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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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Old 07-04-2010, 10:30 AM #3
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Default

Quote:
Originally Posted by Conductor71 View Post
I also blame us for not getting our butts into clinical trials. However, there is some sort of obsession in having dopa naive PWP in trials- pharmas only want the mildest of PD manifestation in their trials. They clearly avoid mid-stage disease and advanced disease PWP- why do you think that is?

Further, why don't our PD orgs begin a newly diagnosed patient education campaign to recruit newbies for clinical research?

There are many more potential better treatments than dopa stimulation. One vastly undertargeted area is Acetylcholine antagonists and allosteric modulators. The latter by Addex has huge potential as it controls dyskinesias. If I am not mistaken these might still be tested against agonists because the purpose is to compare efficacy not simply to improve agonists already on the market. Does anyone know if treatments targeting other receptor points are tested differently? Or do they all have to be in the same treatment family?

Laura
"They clearly avoid mid-stage disease and advanced disease PWP- why do you think that is?"


likely for the reasons i mentioned, lack of enough willing subjects needed to prove small statistical improvement to FDA - btw, due to continuous progression very difficult to measure pd "improvement" WHEN patient getting worse from normal pd during trial - not like diabetes, difficult to get fda approval, recruit neuros, elderly may not drive so can't get to trial, have other diseases that may interfere, side affects more severe.
tough to work with elderly on any non-life threatening chronic disease and get also get FDA approval. seems more gene therapy, stem/fetal cell work going on, might be discouraging more drug research - why develop drug with minor affect when 3-4years gene therapy?
that said, what about ldopa/agonist patches, ldopa pump? azilect, extended release mirapex/requip?
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