Anyone know how Duodopa is going?
I've heard of a lot of problems with leaking at the peg tube site leading to infection. Not much else though. UF has it on their site that the study they are doing is scheduled to end mid 2010.
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I had a doc from the University of South Florida, Tampa, say that there were a lot of issues with infection at the site. I can only hope that this problem has been resolved.
http://neurotalk.psychcentral.com/thread11120.html |
What's Europe's Secret?
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From NPF: Twenty-one years later, the medication called duodopa, administered into an area of the small intestine called the duodenum, is still in clinical trial in the United States. What is annoying is that it's taken over 20 years for a pharamaceutical company to actually develop this therapy. I suspect it's because pharma didn't think this would compete with oral Sinemet, despite the evidence that a continuous infusion greatly reduces dyskinesia and on/off effects- really it's better for us over all. Now that Solvay sees a market in this treatment, I'm guessing it's the FDA bureaucracy holding things up? Anyone know the story behind this treatment? Laura |
Never mind....
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-L |
What gives???
Hey , where did you hear that about the placebo?? I cant imagine it being so. You're getting the drug straight into your system it has to be better!!!!
WTF .. when are we going to get something that will give us some damn help and stop all this marketing ******** if they've had this therapy for 20+ yrs why wont it work for us? F@@@@ Dumb A@@. Go ahead and censor me:mad: :mad: |
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Sorry if I confused. It's just that placebo control research is highly suspect any more given the results of the Ceregene trials. They're finding that PWP are highly susceptible to placebo effect (given that it's linked to dopamine centers in brain may have a little something to do with it). I figure that with Duodopa also undergoing placebo controls, there may be problems- this is sarcasm- I don't know that there actually is a problem at this point. It is true; however, that this therapy was conceived of by pharma researchers over twenty years ago, and that the infusion pump is successful in Europe for at least four years. Why, then, would it be a problem for the FDA to approve it here? Laura |
first 4 patients open label at u of alabama
the university of alabama is doing a duodopa trial with the first four people open label. so the first 4 are getting the drug for sure. the rest is blinded. i don't know if all centers are doing open label and blinded. if not, that would justify the travel to alabama i have been told the first surgery , open label, went very well.. that leaves 3 more open label to go ....at alabama, so ask the other centers if you call about it.
let us know if there are others doing open label will you please? thank you, paula |
just don't understand this...
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God, this situation stinks when we wait years for a different delivery mechanism for a 40 year old drug to be tested. Why not provide Duodopa to all, today, whats the worst that can happen. I will attempt to provide an update on UK status following my neuro meeting 11/09. Neil. |
'THOU SHALT NOT APPROVE DRUG iN TRIAL WITHOUT PLACEBO" , sayeth the FDA and most of the other medical profession in the USA.
thanks neil, for letting us know how the real world is doing with this. paula |
Paula I spoke to my Neuro and he said ...
Duodopa is cleared as a treatment in the UK. It is very expensive though, $60k dollars a year for the drugs alone, then add in the aftercare, monitoring etc and add on $150k. So tough to justify however the PWP it has treated tend to be those about to go into a nursing home where Duodopa becomes cost effective versus the cost of the home. Apparently if being considered by a Neuro, Duodopa "makers" bring their own Accountant to meetings !!
Still looks very effective end stage treatment according to the Neuro. Hope this helps, Neil. |
Why brain surgery first?
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Also, why the exorbitant cost? I think both research and clinicians agree that smaller, steady doses of levodopa is actually better for us as it mimics natural processes vs. the nasty on-off effects and dyskinesia. Why wouldn't this therapy be offered as an alternative to DBS? I don't understand why you would need be ready to enter into a nursing home to be eligible. It seems to me that Solvay is missing an opportunity to market this differently, or are there simply too many complications wherein people cannot tolerate the treatment? Laura |
Good points Laura ...
I believe the reason it has been considered for pwp about to enter a nursing home is that the cost benefit of Duodopa versus nursing home is easier to argue.
I cannot understand why the drugs are so expensive, l-dopa is pretty cheap, liquid l-dopa aka Duodopa seems to cost "$ large". Is this an example of a company pricing themselves out of the market ? Why it should be considered only after dbs is a mystery to me. I agree I would take nearly anything over brain surgery. :( I wonder if there is a vested interest lobby for dbs among companies and Neuros who perform dbs !! To me this highlights the struggle to get drugs to market. We go through a never ending round of trials possibly only to find the company's pricing model is off the pace due to the costs of drug delivery to market. Then we have to lobby the medical profession to move away from their existing pet company / product to consider the new alternative. Makes you wonder how anything for PD gets to market (oh hang on, thats probably why nothing has for 40 years). I wish I had more answers. Take care, Neil. |
duodopa AFTER DBS @@!??
Why can't the duodopa be approved instead of the brain surgery?
They drilled my head and I'm still taking 1500 mg of levodopa a day! I'd much rather have the pump!! And why the heck is this treatment which is so effective being squandered on those in nursing homes! Think of those that this could help get back on their feet and be productive with a lot of life ahead of them, NOPE I cannot see how this is more expensive than brain surgery-perhaps in the long run (drug costs,etc) but come on, initially?? I smell a rat!! I'm up way too late and tommorrrow is another day. Let''''s face it this healthcare thing is never going to be fixed. It's too dollar hungry with special interests. Nite ya'll. |
screening for duodopa trials
I will start screening for trials aat Cleveland Clinic (OH) this month
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MCG in Augusta GA clinical trials
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Problems with peg
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It is my understanding the pegs and tubing are different from the pegs and tubing normally used in the US. Our doctors agreed that Solvay should either change the pegs and tubes or train our US gastro doctors about the differences. It seems like a simple solution but I continue to hear of these same problems again and again. If they know there is a problem, why don't they just address it??!! It is so frustrating. My husband has had great success with Duodopa. The continuous infusion has greatly reduced his fluctuations and dykenesias. I just pray that get this approved quickly because we can surely see the great benefit it would be to so many people suffering with PD. |
[QUOTE=Stitcher;566120]I had a doc from the University of South Florida, Tampa, say that there were a lot of issues with infection at the site. I can only hope that this problem has been resolved.
Unfortunately I don't believe the problem has been resolved. There is a problem with our surgeons being unfamiliar with the different peg and tubing and apparently Solvay has been slow to either change the tubing or further train our doctors. My husband is in the study and had surgery in September 09 to insert his peg. He got a serious infection, requiring additional surgery to repair and correctly place the peg along with removing the infection. He became septic and came very close to dying. He was in the hospital for 3 1/2 weeks. The drug is great but the procedure needs to be perfected. Seems that the solution is simple -- but Solvay hasn't responded very well. |
Why are they so indifferent?
[QUOTE=Dianne G;622585]
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Sorry to hear that your husband ended up with such a serious reaction and infection. I am glad to hear that he has rebound and gains benefit from the system. Will he be able to continue treatment after the trials are over? Laura |
Duodopa study
[QUOTE=Dianne G;622585]
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Thanks again Cmeender |
just getting caught up
i'm just reading this thread - got behind. Thanks for all the information from trial participants and family. I hadn't heard about it only being used if a DBS is ruled out.
Dianne, i'm so glad it was all worth it! what a nightmare..... cmeender, wishing you all the best. the drug companies sink to new levels all the time. They put you through the ringer and completely disregard the punishment and emotional/psychological consequences of the trauma, let alone the near death experiences. after all that, it better work! please keep us posted. paula |
Chris 49 UK. PD for 15 years, Duodopa since December 08.
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From my personal experience, I continue to have a small amount of moisture, but I shower every day, I was also treated by local nurses who kept a watchful eye on me for few months. Now I am back to swimming to keep fit. Try to keep life at a manageable pace. Yes this is a new way of treating my parkinson's symptoms. But the medication isn't.Everyone of us are different, with our own responses to treatments. For my part a tube through the stomach is the last thing to worry about, pre Duodopa I was on the floor or on my bed, off, rigid etc This I refer to as the darkside of my PD. Hope this helps. |
a sincere thanks
I am soooo appreciative for the trial participants comments here. Those of you directly involved can help to dispel some of the endless speculation that comes from not having enough information , and hopefully learn from each other quickly.
welcome to all trial participants, paula |
thank you..
Thank you Diane for your information. This brings to mind IF Stolvay is even aware of the problem. They may be attributing this to post-operative infections, staff not being familiar with the device, monitoring it, etc. Think how hard it is for a PD patient to be admitted to the hospital for a non-PD related reason and JUST try to stay regular on your meds! They can't do it!
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Duodopa study
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She had some discomfort to start with because of the tube but that has been resolved and she is no longer on pain medication. We are still looking for better ways to carry the pump as the shoulder strap is cumbersome and she would like it to be somewhat concealed. If anyone has a good idea please let me know. The pump is 8 inches long 4 inches wide and 1 inch thick. Have a great weekend. Cal |
Possibilities
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Thanks for reporting back on this; it is encouraging to hear how well others are doing with this method. It is far superior to the oral delivery and is a long overdue alternative to brain surgery. Please keep us informed as to the pricing as it may apply in a long term use basis; I fear that Solvay may price it out of reach for many people. Cal, do you know if it is mandatory that the pump unit (box) be carried upright over the shoulder like a handbag? I love to sew, so sewing ideas quickly come to mind. If the shoulder is not necessary, you might be able to find someone to make a custom fanny pack where it is secured around the lower waist or upper hip...almost like a belt. The other idea is to have someone create a little undergarment with an inside/hidden pocket that secures the pump while concealing it. The other idea is, if you can't hide it, flaunt it. There are many beautiful fabrics that we like; she could have a few "designer" bags made to liven things up a bit. Lots of possibilities. I hope your wife continues to do well and feel better. Laura |
Cost of Duodopa
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I have heard rumors that Solvay (now Abbott) was treating this as an end phase, nursing home bed, last resort treatment due to high maintenance costs. Yet on their web site they show active people and tout how it really gives patients a sense of freedom; a far cry from withholding treatment until end stage disease. Other rumor is that the pump will only be considered by doctors in patients who do not meet criteria for DBS...in other words, brain surgery would be the preferred course of pump inusion!? This has never mad any sense to me. Anyway, I would greatly appreciate if anyone could clarify any of this! Laura |
Sounds like the Pump is the size of a cellphone
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I have the pump
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Dan |
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My husband continues to do well with his duodopa trial study. He has to go in every six weeks for a check-up and to receive his meds. This new drug is great. He has regained his strength and most of his weight - and is generally doing much better than before. When he is on, he has no signs of PD. An occasional off time occurs, but rarely. The duodopa has been great!! |
Hi, I'm new to this forum so please forgive me if I write things that are already known. I just wanted to say that in Sweden, where I live, there are about 200 persons with PD (out of about 20 000 with PD) treated with duodopa-pump. The cost is about $140 a day.
I know a man in his mid-40's who literally got his life back when he started treatment with the pump. He went from very disabled to working fulltime travelling alot in work. Sara |
My husband has the pump. We modified a heavy-weight t-shirt by putting a pocket on the front just large enough for the pump to fit, with velcro at the top to close it, cut a hole through the back of the t-shirt for the tube to fit in. We just pull the tube through the hole and out of the pocket, then attach the pump, and drop the pump into the pocket, and seal the velcro (this prevents the pump from falling out when he bends over). Then he wears his normal shirt over the t-shirt. Maybe she can use some variation of this idea to suit her specific needs.
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Duodopa trial in Milwaukee
Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there. Dan & Arlene [QUOTE=cmeender;623604] Quote:
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[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there. Dan & Arlene |
Duo-dopa study
[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there. Dan & Arlene Hi Dan and Arlene: I am not sure how to give you information to get in touch with us. We live in Racine which is just south of Milwaukee. We are about 35 minutes from Froedert depending on traffic. My sign in is part of my first name and part of my last name. Add ing to the end of the sign in and separate the first letter. Good luck next week; I can tell you the nurses on the fifth floor at Froedert are great, very helpful and will take very good care of you. Hi to Jennifer, Julie and Ashley. Cal & Nancy |
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Cal |
contact information
Dan: My wife is currently on the study at Froedert; If you wish to contact us try calling our daughter at her business Racine Community Acupuncture.
Just Google it and it will come up first page. Our best wishes this week. Cal Meendering [QUOTE=lute;683318]Hello, We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there. Dan & Arlene |
Duodopa trial in Milwaukee
Hi Cal & Nancy,
Well, we did it!! Dan & I travelled to Milwaukee for the duodopa clinical trial - open label. We are back home in Minneapolis, trying to get used to the dosing regimen and to finding a comfortable way for Dan to carry around the pump. We'd love to share your experiences with both. Our next appt at Froedtert is Sept. 20th. We will try to reach you through your daughter's business. Dan & Arlene Lutenegger [QUOTE=cmeender;687209]Dan: My wife is currently on the study at Froedert; If you wish to contact us try calling our daughter at her business Racine Community Acupuncture. Just Google it and it will come up first page. Our best wishes this week. Cal Meendering Quote:
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Has anyone in the duodopa trial had DBS?
I was wondering about this. I have been trying to get into this clinical trial but have not heard back from the sites that I have e-mailed to express my interest. I've had DBS but it was less than optimal results. I was told that my leads were marginal. Still having to take about 10-12 levodopa a day. Thanks
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Carry the pump easily...
I have had the pump for 14 months. I have a great way to carry the pump. call me **
[QUOTE=lute;692300]Hi Cal & Nancy, Well, we did it!! Dan & I travelled to Milwaukee for the duodopa clinical trial - open label. We are back home in Minneapolis, trying to get used to the dosing regimen and to finding a comfortable way for Dan to carry around the pump. We'd love to share your experiences with both. Our next appt at Froedtert is Sept. 20th. We will try to reach you through your daughter's business. Dan & Arlene Lutenegger Quote:
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I have had the pump for 14 months.
The duodopa study has been a God send for me. I've had it for 14 months and without it I can't walk or take care of myself. With it, most people don't know I have PD. The reported problems with the PEG site that I read here are false. It is easy to care for and I've had no problems. Reply with questions and I'll try to answer them. Also I found a great way to carry the pump....
RD |
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