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URSODIOL - A Potential New Drug for PD

Drug Treatments

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1126 replies to this topic

#1121 AB-Normal

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Posted 06 January 2016 - 03:16 PM

Grunt? you could not have said it better..........  I agree he does sounds like a Huckster/snake oil salesman.... Personally? I'll take the knowledge and opinion of Christy, a trained physician, over some huckster with zero medical training at all. Especially some huckster on the internet........... In my opinion, WE should ALL be calling the 1-800-4PD-INFO number and vocally complaining about this thread, and the antics of it's promoters....... because it one were to have followed it from the beginning, there have been several things that could be considered illegal, such as offers to buy and distribute this URDODIOL to various members............

 

So yes, I'll stand with you, patriot, Christy and others, in the belief that this whole thread needs to go away............


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Michael
Current age= 56
First symptoms: 1975
Dx.
Parkinson's Disease, Apraxia
Med's
Carba/levodopa 25/100 ER 4 times a day
Amantadine 100mgs twice a day

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14

"I will do what i can, while I can, and when i can't, I'll do something else"
remember folks.................
KEEP CALM, and PARKIE ON...............

#1122 MrFritz

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Posted 09 January 2016 - 06:33 PM

What a bunch of crap.
If you take this drug you can not only stop taking all your other PD drugs but, you will also be able to walk 1/2 a mile.
I feel like I have been listening to a snake oil salesman....

Rick

 

Yes Rick. You are 1000% correct. It is a bunch of crap with a capital "C." And. snake oil is not the only thing that they are selling. BTW, the "they" is Christie et al.

 

Jon, Rick Copple, Hans55 and all of the others, myself included, who have posted their experience here have tried UDCA/TUDCA and found it to be beneficial. All of us are still using it. I have been a user for over 2 years. Rick and Jon for over 1 year.

 

This forum thread is meant to be read by people interested in alternative treatments. If you are not interested, then don't bother to read or post. If you are interested, then read what PWP who have tried UDCA/TUDCA and posted here have to say (exclude me if you wish). There are a significant number of us. Rick Copple's posts and especially his personal blog is a fascinating read. His story started a year ago. You can read his blog at http://rickspdjourne...experiment.html (read from the bottom up) or, you can just ask him by posting in this thread. I'm sure he will reply to you as will most of the others.

 

The word is spreading. Treatments for PD containing UDCA and/or TUDCA are starting to appear. I continually receive e-mails from PWP all over the world. Many are currently using UDCA/TUDCA successfully and, as expected, there are some for whom it did not work. Check out the new supplement "Restore" at www.WeHaveParkinsons.com and while you are there, click on the blue "*REVIEWS" tab on the left center side to see what a few of their users had to say. Restore's ingredients contain TUDCA. BTW, I have no affiliation or financial interest with any web site(s) and/or product(s). I have been fully retired from all business interests since 2009.

 

Only Christie (a doctor of questionable repute) and a couple of other miscreant who have NEVER tried UDCA/TUDCA have been constantly misinforming readers such as yourself by deliberately spouting outrageous lies, half truths and innuendos. Obviously, their agenda is to try to prevent you and others from trying anything that is not a "standard" approved treatment for PD.

 

Here is the bottom line about UDCA/TUDCA for people with PD who can read and comprehend the English language:

  • UDCA/TUDCA is NOT a cure for PD or any other neurodegenerative disease.
  • UDCA/TUDCA does NOT replace any of your currently prescribed PD medications.
  • We believe and hope that UDCA/TUDCA MAY slow or stop PD's progression. This is unprovable at this time.
  • Nobody has reported any side effects other than headaches, rash or minor gastro issues which cease when usage is stopped.
  • We DO recommend consulting with your doctor before starting this regimen.
  • We DO recommend following our guidelines if you want to try UDCA/TUDCA.
  • We DO NOT recommend self-experimentation with your prescribed medications.

Fred


72 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.


#1123 metacognito

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Posted 10 January 2016 - 09:15 AM

What a bunch of crap.
If you take this drug you can not only stop taking all your other PD drugs but, you will also be able to walk 1/2 a mile.
I feel like I have been listening to a snake oil salesman. I find it hard to believe that you went from being DX with PD to finding your magic bullet cure all in what 18 months! Then you try and convince others to follow your led. Take this new drug for PD and you to can stop all your other drugs. I get tremors so bad at times my glass of milk turns to butter but I'd rather have butter then to take drug advice from someone on an open forum. I can't believe at 73 years old you would be as irresponsible as I believe you to be. People with PD (especially those newly DX) are looking for help and answers when they come to this web site the last thing they need is to find and read this thread and start questioning there Doctor before they even get thier meds adjusted.
I think it's time to let this thread die. Just my opinion.

Rick

 

A "bunch of crap"? Either you haven't read the associated studies on the matter or you're simply not able to process the info described therein. And, I think bear-bile salesman might be more accurate than "snake oil salesman" - except that, after a couple hours of reading through the postings here, I don't get the impression 'MrFritz' is doing anything but simply reporting - from his personal experience - about the perceived benefits of a compound that's been extracted from the gall bladders of unsuspecting Asian bears for centuries. Since then in fact, synthesized version/s of T/UDCA have emerged as increasingly promising treatments for various maladies including, most importantly, neurodegenerative diseases such as ours:

 

PubMed abstract (Aug2015) excerpts: "The bile acids tauroursodeoxycholic acid(TUDCA) and ursodeoxycholic acid (UDCA) have been recently shown to be neuroprotective in other protein misfolding disease models, including Parkinson’s, Huntington’s and Alzheimer’s diseases, and also in humans with amyotrophic lateral sclerosis... Treatment targets have included inhibition of protein accumulation,clearance of toxic aggregates, and prevention of downstream neurodegeneration. No one target may be sufficient; rather, compounds which have a multimodal mechanism, acting on different targets, would be ideal. TUDCA and UDCA are bile acids that may fulfill this dual role.. Importantly, these are natural compounds which are orally bioavailable, permeable to the blood-brain barrier, and U.S.Food and Drug Administration-approved for use in humans" http://www.ncbi.nlm....pubmed/25972546

 

PubMed abstract (May2014) excerpt/s: "There is a growing body of research on the mechanism(s) of TUDCA and its potential therapeutic effect on a wide variety of non-liver diseases. Both UDCA and TUDCA are potent inhibitors of apoptosis, in part by interfering with the upstream mitochondrial pathway of cell death, inhibiting oxygen-radical production, reducing endoplasmic reticulum (ER) stress, and stabilizing the unfolded protein response (UPR). Several studies have demonstrated that TUDCA serves as an anti-apoptotic [restorative/neurogenetic] agent for a number of neurodegenerative diseases, including amyotrophic lateral sclerosis, Alzheimer's disease, Parkinson's disease, and Huntington's disease... A growing number of pre-clinical and clinical studies underscore the potential benefit of this simple, naturally occurring bile acid, which has been used in Chinese medicine for more than 3000 years." http://www.ncbi.nlm....pubmed/24891994

 

None of the PubMed reports, and none of what I've read from 'MrFritz' impresses me as someone selling "snake oil". I personally find the information shared rather interesting and well-intended (and if I didn't I'd just move on to the next forum). The only "selling" I detect here is that of an overly pedantic "doctor" with FAR too much time on her hands, a pathetic 'clinger' who basically agrees with/or echos everything the doctor(?) says, and a few low-info, drive-by shooters - all trying to sell themselves as intellectuals. Otherwise, I enjoy the thread.


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#1124 MrFritz

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Posted 10 January 2016 - 11:35 AM

Kudos to metacognito for an excellent reply. You condensed the facts and cited the most relevant studies. I also loved your descriptor of Christie as "an overly pedantic "doctor" with FAR too much time on her hands."  An excellent descriptor.

 

Christie is proud to tell you that she did/does peer review for PubMed. I shudder to think about how many beneficial studies she may have quashed based less on the science but more on her overly opinionated thinking. During her 2 year rant in this thread, she has yet to cite a single study or article supporting any of her points which include: 1) UDCA/TUDCA is harmful and 2) Neither UDCA nor TUDCA is of benefit for PWP.

 

As you may have noticed, I did not bother to reply to Christie's last post because it was purposely written to entice an argumentative reply rather than a discussion of the merits of UDCA/TUDC. The two most important and overlooked relevant facts are:

  • Other posters here have tried UDCA/TUDCA and corroborated what I have said about it.
  • No poster who tried UDCA/TUDCA reported any serious and/or lasting side effects.

They say you can lead a horse to water but you can't make it drink. Well, I've led many to these waters. I've cited the evidence (clinical studies) that its long and short term usage won't harm you and that it is neuroprotective. I've told you how it benefited me. Others have tried it and corroborated my findings. I can not do anything more. The ball is in your court. G_d helps those that help themselves. [ Don't you just love idioms?  :razz:  ]

 

Fred


72 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.


#1125 Research Fiend

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Posted 06 March 2016 - 04:06 PM

This thread and Fred's efforts in it have been amazingly useful for my husband since he was diagnosed two years ago. He cannot find a doctor open-minded enough to prescribe UDCA, but we are buying TUDCA from powdercity.com, and my husband's symptoms have rolled back about five years. Most dramatically, his quality of sleep has improved. He used to be thrashing around and yelling every night, and that is gone. His falls have also decreased from one every few weeks to one every six months. (Tremors have yet to be much of a problem.)

 

I will never understand the nasty, accusatory hysteria of "Christie" (who refuses to provide an actual name or specific credentials, and whose "credentials" sound completely fictional to me) and company, people who have never and will never try something terrifically helpful to a number of people here. It's not enough that they not take it, they need to threaten those who are being helped. All I can say is good luck with your mental illness, it seems quite advanced.

 

Some people need to mindlessly follow all authority figures, and others do their own research. As a researcher type, I don't care what the close-minded do for treatment. It is incredibly weird how fixated the authority freaks are on the treatment of my husband and others who have used TUDCA and UDCA.

 

Thank you, Fred and others who have spoken up!


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#1126 musicman

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Posted 06 March 2016 - 04:39 PM

..just when I think this forum has gotten a little bit boring, voila....


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Bob

 

Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs

 

 


#1127 MrFritz

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Posted 17 April 2016 - 03:33 PM

Greetings and Salutations

 

It has been a while since I posted here. My DW has not been well and I've had some non-PD related issues of my own to deal with.

Firstly, I was not getting any forum e-mails for the past month or two. According to the Forum Admin, "
Your email address was removed from your Forum user account.  We remove email addresses whenever we receive alerts that emails have failed.  I have re-entered your email address.  You should start receiving your email alerts again.
" So if anyone had tried to contact me using the forum's messaging service, I would not have received it. Remember, you can always PM me at mrfritz@comcast.net

I read Research Fiend's posting about her DH's improvement since starting TUDCA. I cannot express just how good it makes me feel reading these stories. Thank you for taking the time to post your results.

I want to take a moment to restate that when it comes to PD symptom reduction, UDCA/TUDCA does not work for everyone. For those for whom it does work, each person's results may differ. The more advanced your disease is, the less likely you are to see any benefit. However, the one big unknown is with PD's progression. We believe that it does slow progression and nothing in my personal experience or that of other posters leads me to believe otherwise. So, it is possible that UDCA/TUDCA may not reduce your symptoms but it may still slow its progression. There is just no known way to tell.

Finally, after having been on 1200mg of Ursodiol (UDCA) for 2½ years, let me update you on my condition which, for the most part, has improved:

 

  • I do seem to have a little more sporadic dominate right hand tremor when holding or carrying a glass, eating with a fork or mixing something. Nothing bad. Just a little disconcerting.

 

  • Most notable is my RBD (Rapid eye movement sleep Behavior Disorder). I still occasionally thrash about and yell. But it is no longer an everyday occurrence. It’s been months since I last recall fighting or hitting anyone or anything.

 

  • I had been, for the most part, housebound due to Nocturia with extreme urgency caused by a grossly enlarged prostate compounded by my PD. I was waking up every 45 minutes and had to run fast. After being on UDCA, my symtoms improved to where I was waking up every 2 hours or so. 11 years ago I had a green laser procedure which worked wonders for me. However, my Urologist told me that I am now contraindicated for this procedure because of my PD. As always, I did my research and found that todays thinking has changed. I provided my Urologist with the studies and he agreed to do the procedure. Today (6 months later) I am good for 2-4 hours during the day (if I don't over-indulge on coffee), I sleep through the night and I do not have any leakage issues. I no longer plan my excursions around bathroom locations. Life is now greatly improved to the point of being almost normal.

 

Well, that’s all I have to say for the moment. Hope to hear from you soon.

 

Fred


Edited by MrFritz, 17 April 2016 - 03:37 PM.

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72 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.





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