Have you heard about a new Levadopa Gel?

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From the European Parkinsons Disease Association (EPDA)

"A gel form of medication implanted in the smal intestine is more successful in reducing 'off' time in people with advanced Parkinson's, according to a new study at the University of Maryland. This may prove to be an alternative for more advanced patients who are considering DBS'"

There is a lot of information about new possibilitieson the EPDA website:-

epda.eu.com/en/#

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  • Actually this is where it can be found , quite a long way down, almost at the bottom

    epda.eu.com/e-newsletter/20...

    Sorry about the wrong link,, but you should be able to get to the website from the newsletter (if you want to!)

  • Thanks

  • Here is the press release from Maryland...

    umm.edu/news/releases/lcig....

  • I found this on the net this morning

    A brand new form of ‘gene therapy’ for Parkinson’s disease has excited experts today, after it was revealed that it could revolutionise the way the neurodegenerative disease is treated.

    Researchers from the Cambridge Centre for Brain Repair have created a groundbreaking ‘one shot injection’ called ProSavin, which helps transport the nerve-controlling chemical (dopamine) to the brain.

    Parkinson’s disease is caused when the brain stops producing the chemical dopamine, which in turn damages nerve cells, prompting the onset of symptoms.

    These include hand and limb tremors, rigidity and slowness of movement.

    The new breakthrough treatment is designed to continue a healthy flow of dopamine into the brain by mimicking “stripped-down” viruses that trick and ‘reprogramme’ brain cells into producing the chemical.

    The ProSavin treatment is injected into the striatum (the part of the brain that controls motor movement). Scientists are hoping this treatment could potentially stop, or improve, the symptoms of Parkinson’s.

    Dr Philip Buttery from the study told Sky News: "It seems to be having an overall beneficial effect in smoothing out people's days, probably allowing a slight dose reduction in medication and in some patients a better sleep pattern and a better quality of life for all."

    Despite the positive findings, the study is still in its early stages and will need further investigation as the treatment has only been tested on 15 people so far.

    Scientists are hoping the treatment will be available within the next five years. Although gene therapy has taken place in the US before, this is the first time dopamine has been produced in the brain.

    Dr Kieran Breen, director of research and Innovation at Parkinson’s UK told HuffPost Lifestyle: "Gene therapies hold great promise for people with Parkinson's in the future, as they could mean an end to the daily regime of drugs that most people with the condition currently face.

    "In addition to ProSavin, there are three other gene therapy trials underway at the moment. So far all the therapies appear to be safe - now the challenge is to see whether they are more effective than the medications we already have for Parkinson's.

    "Parkinson's UK is currently funding £750,000 worth of cutting-edge gene therapy research in the UK, which we believe could take these treatments to the next level.”

    In the UK, one person in every 500 (around 127,000) has Parkinson’s disease. Yesterday, reports revealed that an estimated 115.4m people will be affected by neurodegenerative diseases such as Parkinson’s and Alzheimer’s by 2050.

  • Thanks for the detailed information. :-)

  • I am currently participating in the study of this Gel. It has changed my life.

    I have had PD for 10 years. I was only having 2-3 good hours a day and I was taking a pill every 2 hours I could no linger drive.... Now I have very little off time I am free to go out on my own and I am driving again.

  • WOW!!! That's wonderful. :-)

  • Very encouraging. And sounds less daunting than DBS which is let's face it brain surgery!

  • Thanks CassieB, you've given me hope. Continued Good Health.

    Sherry

  • I am also in this study it has given me my life back.I was diagnosed 6 yrs ago and @ my base visit my disease was 15,now I'm 1.I can still do my job as a hairstylist. and do my hobbies with no problem.I'm @ the university of ky.my nero is head of the study there.He is a wonderful and caring dr.

  • Cassie, can I ask are you still using the pump, and were did you get it? Is it still available to anyone.

  • Yes I am still using the levodopa carbidopa intestinal gel (LCIG).

    In the USA it is still in the study phase, however the FDA is currently looking at it. I assumed that by later this year it should be approved by the FDA for public use. If you have any questions please don't hesitate to ask.

  • Cassie,

    Sounds wonderful, I'm asking for my best friend, has no family and is taking meds every 2 hours. I have been calling and emailing doctors all over to get her into this program but no luck. It kills me to see her in this condition. I've seen her go from a very busy lady to today and she can hardly walk. I'm doing everything I can for her. Her PD doctor is suppose to be the best in Philadelphia, but he tells her to take more meds. And he dose not like the pump, he says it is to big to carry around

  • I was were your friend is I was taking medication every 2 hours. I was on a rollercoaster ride between the on/off fluctuations. I joined this study because I was scared to have the deep brain stimulation. I have seen several people that loose there ability to talk correctly.

    The pump is a bit big, I have made my own pump bag that looks like a purse to carry it in.

    My quality of life has improved I find it worth carrying the pump around.

    The FDA is in the process of looking at all the submitted data. hopefully this fall it will be approved and available to everyone.

    Best of luck to your friend and God bless you for being such a wonderful friend!

  • Thank you for the information. I just hope that some day I will see my old friend back

  • Hi Anyone know where I can get onto one of these trials. I live in Leeds in the UK and have idiopathic Parkinsons. Not on any medication at the moment. the side effects are worse than my symptoms which are freezing and poor speech. I used to play double bass but my co-ordination as just about gone which is very frustrating.

  • Sugget that you ask your neuro about trials in the UK. If you have never taken any PD drugs you may be a good candidate for some trials.

    You don't say how old you are, or why you haven't started on medication.

    Meds could resolve some of your PD symptoms and give you some years more on your double bass......

  • What medications have you tried? Have you tried sinemet, also know as carbidopa/levodopa? This carbidopa/levodopa intestinal gel is a new way to recieve this medication. To qualify for the clinical trial you have to be responsive to carbidopa/levodopa.I would talk with your Doctor about medication. Yes medications have side effects, the key is finding the medication that works for you and to start a low dose and slowly increase. I wish you the best.

  • Hi Cassie thanks for that. Yes I have tried all the meds available but none seem to work for me. So it looks as if the trial is out for me as well.:-( I am 70 yrs old by the way wonder if that would make a difference as to whether I could get on a trial?

  • Ken, your age would not be a factor. Once the drug has been aproved by the FDA, I believe that Doctors will have more flexability to whom they recommend the use of the gel.

  • I believe that the intestinal gel mentioned above and currently being tested in Maryland is the same as Duodopa which is already approved for use in Europe. Perhaps someone else can clarify whether this is so. The US version will have a slightly different delivery system especially for the US market. People in Europe have found it to be very helpful.

    The other drug mentioned in development is Prosavin which is still in the trial stage, and unlikely to get to patients for some years.

    Sadly for many years drugs have been in development and there is always another report saying 'treatment will be available in five years'.

    If you have not taken a look at the main Parkinsons Movement website there is plenty of interesting information there.

    parkinsonsmovement.com/

  • Hi I was wondering if you have the DBS would you still get it . Then I seem the above, If It is just Duodopa which I don't think it is . It did not work any better than pills on me. I hope it not as I have tried Duodopa and the tube kept blocking so spent just as much time off.

    We live in hope.

    yours EXPORT.

  • How is the gel "implanted" in the small intestine? How long does the implantation last?

  • It is not implanted but pumped in through the abdomen bypassing the gut which is one reason Levodopa dosing is so unpredictable (it is a protein that ends up competing with other proteins). If you have seen an insulin pump it is very much like that. Yes, your meds have to be carried outside of you in a small cartridge and you have a tube, so not exactly hidden. In my mind though it is a far better alternative than brain surgery. It has been used in Europe for over ten years and is approved in over 38 countries. It is criminal that the FDA is treating it like no one has ever used it before and making Abbott spend needlessly on clinical trials. The FDA fast-tracked it 8 years ago!!! The longer they split hairs, the longer we needlessly suffer.

  • Thanks for the clarification. There must be some concern if they are still asking for more trials. I will have to research this further. Thanks.

  • SORRY NEW AT THIS,

    DBS IS WHAT? I'M 66 WITH LEFT HAND TREMMERS FOR 2 YEARS

    BOB B

  • DBS is a surgical insertion of electrodes into the brain... deep brain stimulation. There is also a control unit under the skin below the clavicle.

  • Thanks , El

    wow

    Reguards,, BB

  • I believe Lindylanka is correct. Two treatments are being discussed on this thread and they are quite different.

    Duodopa, the intestinal gel has been used for a number of years in Europe, i think since 2006 in UK. There are two earlier threads here you can read by doing a search with the word duodopa. One has a video of a patient on duodopa treatment.

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