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03-05-2014, 11:43 PM | #11 | |||
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Senior Member
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The inhaled form has been on the table for a long time. I do think the more direct routes have far more promise than anything oral. The med really needs to bypass our digestive system and maintain steady plasma levels, so I remain skeptical of any oral delivery no matter what the claims are. I appreciate that there are more promising things in the pipeline; I know that I seem to be looking backward with my enthusiasm, but frankly all of these treatments, including DBS, are far from innovative. Really, they all really are attempts to find more effective and efficient ways of administering ldopa. Given that, I agree with Dilmar, I will take it while we "wait and wait" for better things. Some of us do not have such a good long term relationship with meds. I went from 300 mg a day of Sinemet to 1200 within 3 years of diagnosis, and not one med adjunct has ever given me substantial "on time". This means I have to dose every nearly every 2 hours. Others have had unsuccessful DBS. To some of us, Duodopa, as clunky and cumbersome as it sounds, would likely help immensely. |
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"Thanks for this!" says: | Tupelo3 (03-06-2014) |
03-06-2014, 02:29 AM | #12 | ||
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Junior Member
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My neighbor actually works for Abbvie and is very excited about the results of Duodopa. He is under a non disclosure agreement, so I am not privy to a lot of information, but I do know they are aiming for approval by this summer.
He previously worked for the company that sold apomorphine and said the first thing he was going to do when he gets to heaven is thank God for that drug because it changed the lives of so many people. He said he would see people come in a wheel chair and after the injection, walk out the door like a person who never had PD. The best part is...he says he has seen the same kind of results and feels the same way about Duodopa! I will talk to him this weekend and ask if there are certain requirements for getting the pump. |
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03-06-2014, 09:12 AM | #13 | ||
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Magnate
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duodopa obviously works, the problem is the cost, complications and complexity, you have to have help with it at times. i've read the accounts where it has given people their lives back. still have to wonder what affect inhaled levodopa will have on the quality of life of advanced pd'ers if/when it gets approved. also gets around the gastric emptying problem and other problems in the gut that might reduce absoption |
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"Thanks for this!" says: | Conductor71 (03-06-2014), Tupelo3 (03-06-2014) |
03-06-2014, 10:13 AM | #14 | ||
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The drug they are using in the continuous infusion is levodopa ethyl ester (LDEE) which is a prodrug that is rapidly hydrolyzed into levodopa. LDEE has been tested many times in other research and is already FDA approved. Their research so far has shown that the dopafuse infusion provides stable plasma L-dopa concentrations throughout the day. Hopefully, they'll complete the Phase II soon and move on to a more extensive Phase III. Early reported results have shown greater than 60% reductions in off-time in randomized trials. |
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"Thanks for this!" says: |
03-06-2014, 04:03 PM | #15 | |||
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"Still have to wonder what affect inhaled levodopa will have on the quality of life of advanced pd'ers if/when it gets approved. also gets around the gastric emptying problem and other problems in the gut that might reduce absoption."
I have a friend who recently trialled this, used as a rescue medication and it had very good effect. Very quick action and lasted well. Guess a concern is the effect of an inhaled substance on the lungs. Good news indeed about the subcutaneous dopafuse.
__________________
"We don't see things as they are, we see them as we are." Anais Nin. |
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"Thanks for this!" says: | Tupelo3 (03-06-2014) |
03-11-2014, 07:40 AM | #16 | ||
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03-16-2014, 02:58 PM | #17 | ||
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Hi,
I hope this drug delivery system system is soon approved. My wife is running out of time and is close to entering a nursing home. She has a very hard time remembering to take her pills (every 2 hours), she has hallucinations, is down to 100 lbs and is in a very fragile state. Her neurologist has just ruled out DBS because of hallucinations. It's all beginning to sink in that there's not much more that can be done and her life is going to change. John |
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03-17-2014, 03:20 PM | #18 | ||
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Your wife, do you think it could be med related, the hallucinations? Perhaps discuss the lowering or cessation of agonists or other likely causes with neurologist. Is she underweight due to dyskinesia? If so a discussion re meds and cause of why she's so thin. Is she elderly or unable to communicate her needs? Perhaps a consultation or chat with her and family to know you've exhausted those and any other questions you might have. The pump may if she is In a poor state be her saviour. Best wishes |
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03-23-2014, 07:22 PM | #19 | ||
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Junior Member
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Hi
I posted earlier about this I have a friend 70 year old vet. he is in late stage and in bed.They dont do any therapy for himhe just spends most of his time in bed he got good benefit from sinemet for several years.I dont know why he never got DBS,maybe the va wouldnt cover it.I think he might get benefit from the pump and get him out of bed. Id like to find how to get him atleast a trial on this so he can live. I read that many got mobile again and realy wonder why this is being held up he lives in upstate ny,any replies are welcome. |
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03-23-2014, 09:04 PM | #20 | ||
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Member
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Given that he lives in upstate NY, you may want to look into Canada as an option, where it is already approved. I would imagine insurance could be an issue. In fact, who knows how fast they'll cover in the US. |
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"Thanks for this!" says: | soccertese (03-24-2014) |
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