"Better Levadopa would mean everything to me"

[quirkyme]

This is from from Michael J. Fox Foundation News.

michaeljfox.org/foundation/...

[Ryan12]

Yes that is wonderful news after 50 years, I realize the the Fox foundation does wonderful research, but it akes so long to create a new form of a very old drug....where is the research on Coconut oil??? this where it is being tested for Alzhearmers (sp)... I have xperiment with the nicotine patch which really worked wonders and I have tried every which medication the slow release ledopa.....not compalining but a person with PD must search the air ways to discover what works my question is if the AL contingent are doing trials on the coconut oil....why aren't the Parkinson's reasearc team invovled too???? [e-mail]

[quirkyme in reply to Ryan12]

you would have to ask the PD organizations....

[shakey in reply to Ryan12]

I would like to know more about your results with the nicotine patch. I have always wondered about nicotine replacement because I smoked for 30 years and almost at the same time I put out the last cigarette, wham! here comes the Parkinson's diagnosis. I did not have any fantastic results with the coconut oil and had a friend who said it caused her thyroid problems, don't really know any of the details. It is my opinion that if the drug companies can't make a fortune selling a new medication there will never be much research on things that are readily available.

[Ryan12 in reply to shakey]

Thanks for your reply my brother had advanced Parkinson's and had to go into LTC facility and the Doctor claimed that he was over medicated and he could not recognize his own family, the Doctor recommended the Nicotine patch and the very next day he was lucid and could talk to his family and he had 3-4 months of awareness however the Nicotine patch was expensive and was not covered under his health care plan, so they stopped. I tried the nicotine patch myself about a year and a half ago I was very depressed it was winter and I assked my Dr. for a prescription and she agreed again the resultss were very good it affeccted my brain, and cleared my mind I became over active and the tremours increased I had a real problem sleeping so I stopped the patch.......there was a notice of a controlled study of the nicotine patch in the USA and Germany never heard of any reults.......I agree with you unless there will be a large return on their investment drug companies will not act!!! I am really pleased with the Coconut oil, I have my brain back again, I can laugh and sing again I realize it will not be the cure but it gives a haven to collect my soul, and enjoy each day that God gives me Amen!!! Pleae stay in touch and give the CO oil a test you have nothing to lose CU stay in tokuch [e-mail]

[quirkyme in reply to Ryan12]

I have tangled with others over CO and am a skeptic but agree that drug manufacturers are not going to investigate what is a food. Interesting comments on nicotine patch. Insurance companies should be forced to provide a med that works.

[hanifab23 in reply to Ryan12]

please tell me more about coconut oil

[quirkyme in reply to shakey]

a neurologist who spoke to a group I was at last week said that smokers are less likely to get PD. Interesting timing, you going off cigarettes and then getting PD.

[Hidden]

I agree absolutely! My father had PD in the 60's and Levodopa was the drug he took, but could not tolerate. He ended up with hallucinations. After all these years, Levodopa/carbidopa is considered the gold standard. My neurologist has not even indicated that there is anything else available. After 2 and one-half years of taking this drug, my neurologist added Comtan. I am not happy with this combination. I do not feel well 50% of the day. All I seem to do is wait for the next pill. I take this combo every 4 hours. I don't think I tolerate taking them any sooner (like every 2 hours). After that regime wears off, what is next?

[quirkyme in reply to Hidden]

can you take half the dose every two hours? I heard a neurologist suggest that some of his patients have been on this protocol - or tried it. I don't know how that would work at night.

[Hidden in reply to quirkyme]

Qhirkyme, thanks for your response. Really appreciate it.

At night I take one 200/50 mg Controlled Release, levo/carbid plus Comtan and .5 Clonazepam. This combo helps me sleep most of the time. I was considering asking my neurologist for the controlled release pills for daytime. Perhaps, they only work well at night because he never mentioned taking them during the day? I believe doctors don't provide you with very much information. You have to find out yourself!! Very frustrating.

[quirkyme in reply to Hidden]

I'm glad you wrote. I co-lead a support group for PwPD. It's for education and support, but also socialization. What you say is true about doctors not giving info. PwPD have to be proactive and learn all they can, or at least someone in their family has to do this.

Our group exists for people to share what they have learned and a lot of things people find out (often by experience) are not in PD literature or it's such a minor finding you may not have noticed it . (Most recently one person learned something in the group about low BP and that helped him/his family adjust his cardiac meds).

I think more and more of the meds need to be controlled release and patch that gives the person a constant dose of medication.

The PD doctor we saw last week (in a presentation) talked a lot about sleep and said some people don't need 8 hours of sleep. In any case he said to keep active during the day, do sensible things prior to sleep (wind down, etc.), and if you can't sleep after 1/2 hour to get up and do something quiet. In a few days your natural tiredness will come back. Don't know if this would help others here but might give it a try or talk to your doctor. Good luck!

[fronya69]

To all- we need to get the FDA get off their butts and push thru meds.and clinical trials. STILL WAITING FOR SOME KIND OF AN UPDATE FOR RYTARY.This drug is extended release. lasting 6-8 hrs. This drug has so much promise. It's longer lasting effect can help soooo many Parkies!! My movement disorder spec. says i would be an execellent candidate 4 this drug. What can we do 2 speed this drug up 4 release?????? fronya

[quirkyme]

I agree. Don't know anything about Rytary. Tried to get extended release ropinerole but insurance company wouldn't pay for it. I think extended release meds is the way to go, so as to prevent the on/off dips and highs from meds.

I don't know how to speed up PD med approval other than to talk to your federal Representative and Senator. Get involved in PD organizations. Get a bunch of people together and go to their local meetings or find someone on their staff who will look into the issue. Educate them, let them know that there is an underserved constituency in the district. Hold local informational meetings on neurological diseases at the local library and/or write columns in your local newspaper educating people about what is needed. With all the brain research going on, we all need a tutorial on the research. PBS has good medical and science programs.

Other suggestions??

[soccertese]

your're preaching to the choir here, developing better variations of agonists and l-dopa isn't rocket science, you can read articles going back to 1990 or earlier discussing inhaled l-dopa, pumps, sustained release, ester formulations of l-dopa.

RYTARY might be better than stalevo, not sure if they went head to head against L-DOPA and a COMT inhibitor but you can be assured like with neupro, azilect, and brand name requipxl it's going to be expensive, at least $400/month. it's even more ridiculous that the issue holding up it's release is not about effectiveness but problems at IMPAX labs california manufacturing facility, not meeting federal standards. which also brings up the question why the larger pharma companies aren't doing more pd research, obviously tough to get a new drug approved because l-dopa is so effective, difficult to recruit pd patients, variability in pd'ers and has to beat DBS and the remote chance there might be a disease altering treatment which will reduce the need for meds.

There is an israeli company working on a cheaper l-dopa pump, there's the current DUODOPA pump awaiting FDA approval.

i'd love to try the neupro patch, have some samples so likely will just to see if i can tolerate an agonist - if i can't tolerate short acting Rotigotine likely can't tolerate any agonist - but can't afford neupro along with requipxl which i hear works quite well.

i was diagnosed 12 years ago and taking (1) 50/200CR + (1) 25/100mg every 3.5 hrs until 1PM then 100mg every 2-3 hrs until 7pm and (1) 50/200CR before bed. i use 60% bioavailability for the CR so this dosage is less than 1000mg and no dyskinesias yet. heck, i'm temped to placed a tablet in a gel capsule and see what happens.

really have to watch my protein intake, really interferes with absorption,.