Parkinson's Disease Tulip


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Old 12-29-2013, 02:25 AM #1
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Default Double blind Duodopa study abstract

Looks like it works well, but the tube is an ongoing problem.

http://www.thelancet.com/journals/la...293-X/abstract
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Old 12-29-2013, 04:22 AM #2
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Olanow et al. report [1]:

"From baseline to 12 weeks in the full-analysis set, mean off-time decreased by 4·04 h (SE 0·65) for 35 patients allocated to the levodopa-carbidopa intestinal gel group compared with a decrease of 2·14 h (0·66) for 31 patients allocated to immediate-release oral levodopa-carbidopa (difference −1·91 h [95% CI −3·05 to −0·76]; p=0·0015). Mean on-time without troublesome dyskinesia increased by 4·11 h (SE 0·75) in the intestinal gel group and 2·24 h (0·76) in the immediate-release oral group (difference 1·86 [95% CI 0·56 to 3·17]; p=0·0059). In the safety analyses 35 (95%) of 37 patients allocated to the levodopa-carbidopa intestinal gel group had adverse events (five [14%] serious), as did 34 (100%) of 34 patients allocated to the immediate-release oral levodopa-carbidopa group (seven [21%] serious), mainly associated with the percutaneous gastrojejunostomy tube."

Can someone please confirm that I have understood this correctly:

the benefit - almost 2 hours per day more on-time as compared with probably a sub-optimal alternative (immediate release levodopa-carbidopa monotherapy; and even less when compared with the optimum for most people which, in my opinion, is probably a mixture of levodopa based drugs, agonists and inhibitors, with a range of release profiles).

the cost - about a 1 in 6 chance of serious adverse events in the first 12 weeks and, according to a report by the Scottish Medicines Consortium, dated 8th September 2006, annual costs of from £28,028 to £56,056 [2].

References

[1] The Lancet Neurology, Early Online Publication, 20 December 2013
"Continuous intrajejunal infusion of levodopa-carbidopa intestinal gel for patients with advanced Parkinson's disease: a randomised, controlled, double-blind, double-dummy study"
Prof C Warren Olanow MD a Corresponding AuthorEmail Address, Karl Kieburtz MD b, Per Odin MD c, Alberto J Espay MD d, David G Standaert MD e, Hubert H Fernandez MD f, Arvydas Vanagunas MD g, Ahmed A Othman PhD h i, Katherine L Widnell MD j, Weining Z Robieson PhD h, Yili Pritchett PhD k, Krai Chatamra PhD h, Janet Benesh BSMT h, Robert A Lenz MD j, Angelo Antonini MD l, for the LCIG Horizon Study Group
http://www.thelancet.com/journals/la...293-X/abstract

[2]
http://www.scottishmedicines.org.uk/...opa_316_06.pdf

John
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Old 12-29-2013, 09:35 AM #3
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Quote:
Originally Posted by lab rat View Post
Looks like it works well, but the tube is an ongoing problem.

http://www.thelancet.com/journals/la...293-X/abstract
The clinical trial I am in right now takes place on the same floor as one of the Duodopa test sites. There is no doubt that there have been problems with insertion site infections and other complications. IMHO this product never becomes a PD mainstay. The acknowledged benefit of a 2 hour increase in on-time does not seem to justify the major surgery, complications of infections, ongoing maintenance and high cost. I think other technologies will come along that will be more effective, less intrusive and lower cost. For example, SynAngile is now is Phase II testing of DopaFuse. They are testing the continuous infusion of a L-DOPA prodrug delivered subcutaneously with a standard, off-the-shelf, insulin pump. It's significantly less invasive with minimal, if any, side-effects. The L-DOPA prodrug is broken down into normal L-DOPA and absorbed into the plasma. The prodrug has already been tested in many large clinical studies and has demonstrated safety and efficacy in both oral and injected forms.
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Old 12-29-2013, 01:31 PM #4
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Smile apomorphine pump

wonder where it fits into the treatment equation, it's been around for 20 years. haven't researched it much, i assume a l-dopa pocket pump would be preferrable otherwise why develop a duodopa pump in the first place if the apomorphine pump was so great?

there is a sublingual apomorphine being developed which might really help those with ON/OFF problems without having to inject apomorphine.

And an extended release amantadine is being trialed. Wonder how much a cocktail of brand name extended release REQUIP, extended release AMANTADINE, C/L and COMTAN would cost/month. Or replace REQUIP with NEUPRO. Save your money.

i haven't seen much discussion of inhaled l-dopa (in clinical trial) as being much more than a "rescue" drug, maybe because it will be too expensive and/or worry about having to inhale l-dopa quite often but i can't help but believe it might help delay the need for dbs or a pump by allowing a lower baseline l-dopa dosage. or possibly it will be used as a primary drug since i assume one reason for unpredictable ON/OFF is digestive system problems and you bypass that with a pump or inhaler. Still, research shows you need consistant l-dopa levels for ideal symptom relief and less dyskinesias but having an inhaled l-dopa might allow you to take less oral CL since you could risk going "OFF" knowing you can inhale l-dopa and be ON quickly.

There is an orally disintegrating l-dopa called PROCOPA or something like that but it still has to be absorbed in the small intestine.

rather be talking about a cure.
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Old 12-29-2013, 09:23 PM #5
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Default One person's experience of duodopa

http://www.ncbi.nlm.nih.gov/m/pubmed/18520982/
2008 study with longer on time outcomes but not double blind

Being new to this conversation i dont know what has gone before and my forum search skills need refining so if people are aware of Par's videos (link to one below) I can remove this one.

I think that duodopa is a useful addition to our limited treatment options. The open insertion site is problematic but i guess it is the same as those with tracheostomies, gastric feeding tubes, ileostomies etc. i wish it was a choice available for me. Pity it is so expensive.

http://youtu.be/MSSnzhzirxM
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Last edited by dilmar; 12-29-2013 at 11:23 PM.
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Old 12-30-2013, 09:08 AM #6
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Quote:
Originally Posted by dilmar View Post
http://www.ncbi.nlm.nih.gov/m/pubmed/18520982/
2008 study with longer on time outcomes but not double blind

Being new to this conversation i dont know what has gone before and my forum search skills need refining so if people are aware of Par's videos (link to one below) I can remove this one.

I think that duodopa is a useful addition to our limited treatment options. The open insertion site is problematic but i guess it is the same as those with tracheostomies, gastric feeding tubes, ileostomies etc. i wish it was a choice available for me. Pity it is so expensive.

http://youtu.be/MSSnzhzirxM
based on your meds and this post it looks like your're fairly advanced. most advanced pd'ers i've met that are doing well are also on amantadine. just thought i'd throw that out.
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Old 12-30-2013, 02:47 PM #7
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Default Meds

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Originally Posted by soccertese View Post
based on your meds and this post it looks like your're fairly advanced. most advanced pd'ers i've met that are doing well are also on amantadine. just thought i'd throw that out.
I was thinking duodopa as a future option but interesting all the same. Im not liking the recent addition of entacopone. Maybe i should try amantadine first. Any comment or reading you can suggest?
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Last edited by dilmar; 12-30-2013 at 03:03 PM.
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Old 12-30-2013, 03:50 PM #8
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Quote:
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I was thinking duodopa as a future option but interesting all the same. Im not liking the recent addition of entacopone. Maybe i should try amantadine first. Any comment or reading you can suggest?
i haven't tried those 2 drugs, rationally or irrationally am trying to stay with only a combo of immediate and controlled release CL and put up with wearing off when i forget to take my meds. it's been years since i tried mirapex and requip, will likely have to take one of them but they sure made me drowsy so delaying as long as possible, neupro just too expensive.,

i've just noticed that 4 advanced pd'ers that i have met that seem to be doing well at spinning classes for pd'ers or support groups are on an agonist, C/L, COMTAN and amantadine. these are just casual meetings, haven't discussed pros and cons of their drug regimes with them.
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Old 12-30-2013, 09:39 PM #9
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Quote:
Originally Posted by dilmar View Post
I was thinking duodopa as a future option but interesting all the same. Im not liking the recent addition of entacopone. Maybe i should try amantadine first. Any comment or reading you can suggest?
Hi Dilmar,
I think Amantadine is a helpful drug.
I was reintroduced to it in recent yrs and titrated up to 3 x daily with good results. I tried reducing then stopping it a few months ago but went back on it as it definitely helps my gait.
You take Comtan right? How about trying stalevo instead?
I think NZ has much the same drug names and availability as we have in Australia.
Anyway just a thought, good luck with your drug regime.
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Old 12-30-2013, 11:52 PM #10
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Hi made it up
Stelevo is not funded in NZ neither is Azilect but my chief gripe is we have no long acting agonist (and only generic ropinerole immediate release). My brother with PD is on Amantadine. Does it help tremor? My symptoms have worsened since I had to come off RopineroleXL when i returned to NZ. May be coincidental.
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