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URSODIOL - A Potential New Drug for PD

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#901 Nemo

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Posted 23 April 2015 - 04:24 AM

Possiblyeither way it seems that it has brought something positive  :) 



#902 sphynx

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Posted 23 April 2015 - 04:44 AM

Hi, Fred,

 

Interestingly, I HAVE felt a little better, after the 2 days on TUDCA !

 

It is a real shame I can't go back on TUDCA  until I can get another ultrasound scan. It is going to be a long process here in the UK, as I have to wait quite some time before I get an appointment with a gastroenterologist, who will then send me for a scan. I'll let you know the outcome in due course.

 

Regards



#903 MrFritz

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Posted 23 April 2015 - 02:15 PM

Thanks to both Nemo and Sphynx for your updates.

 

Sphynx: Sorry to hear that you're suffering under the ills of socialized medicine. In theory, you would think that you would have the best care but it doesn't seem to work that way in almost all countries. Unfortunately, once it is adopted, it's almost impossible to reverse course. Those here in the US who have advocated for it may rue the day that 0bama Care (yes that's a zero and not an Oh) was enacted. Sorry. Wrong forum for political rants. Good luck and have a great day.

 

Fred


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. Stopped Aspirin and Supplements on 4/14/15 due to bleeding issues caused by kidney stones.


#904 cathy944

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Posted 05 May 2015 - 05:09 PM

Fred, are you still on Ursodial?  I think that you are but checking to see if your tremor is still mostly gone?



#905 MrFritz

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Posted 05 May 2015 - 06:58 PM

Cathy944 Posted Today, 06:09 PM:

Fred, are you still on Ursodial?  I think that you are but checking to see if your tremor is still mostly gone?

 

Hi Cathy,

 

Yes, I am still on Ursodiol. April 20th marked my 1 ½ year anniversary. I was planning on posting an update soon but you beat me to the punch.

 

I have always been 110% honest with the forum as to how UDCA has helped me. I have no intention of ever changing that philosophy. So here goes:

 

Prior to UDCA, I had a large number of PD issues which included tremors (both action and non-action), vision (blurry/focus), frequent urination, sleep disorders (RLS, RBD, Nocturia), toe dragging, balance, loss of smell, etc. Initially, although I had a lot of issues, I was unaware that they were all PD related. As compared to many people here, I think my symptoms were less severe. The action tremor in my right hand prevented me from being able to sign my name and I had trouble steering my car. I did need and get a handicap sticker for my car. 

 

Believe it or not, I actually felt my tremors increasing on an almost daily basis. I was suffering from some mild depression just thinking about where and how fast I was heading downhill.

 

36 hours after starting UDCA, almost 100% of my tremors disappeared. Subsequently, excluding my sense of smell, almost all of my other issues abated too except for the urinary and sleep disorders.

 

Moving ahead to this year, all of my sleep disorders are significantly improved but not completely gone. However, I am experiencing a slight increase in the action and non-action tremors in my hands. So again, I am starting to have some difficulty signing my name. But it isn't anywhere near as bad as it was before.

 

What I can say is that UDCA did not stop the progression of my PD. But I am still confident that it has significantly slowed its progress. With that being said, my condition today is still significantly better than it was when I was first dx’ed. I’m still taking 1200mg/day Ursodiol (UDCA) and I forsee taking it for the remainder of my life unless something better comes along.

 

I hope other TUDCA/UDCA users will periodically post their current conditions and note and new changes be it positive or negative.

 

One last note: I think that Jon and others are on the right track with their additional supplements. If they’re right, it may further slow or stop progression. If they’re wrong, it didn’t hurt anything other than your wallet.

 

Warmest regards and good luck,

 

Fred

 


Edited by MrFritz, 05 May 2015 - 07:03 PM.

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. Stopped Aspirin and Supplements on 4/14/15 due to bleeding issues caused by kidney stones.


#906 colleendaydreaming

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Posted 12 May 2015 - 01:20 AM

2+ hours of reading...that is with skipping pages and wow!  First, interest in UDCA, then horror at some of the posts, then amusement (musicman keeping it light hearted).  This really is like a soap opera, or maybe a Shakespearian play.  Power, intrigue, back (and front) stabbing.  Plot, sub-plot, sideways plot.  Made up users, people with their own agenda for various reasons.  Too much intrigue to even mention! 

Somewhere in here is possibly useful information but I kept reading for the drama, I mean who could possibly turn away from this.  And I thought everyone was so supportive at all times on this nice blog.  Is this considered the dark web?

 

So, I went and ate a chocolate covered caramel (Mother's Day Present) and decided to jump in.  I'm not sure why, but what the heck. 

 

My husband's appointment with his neurologist is in two weeks, we'll ask about UDCA. 



#907 MrFritz

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Posted 12 May 2015 - 07:45 AM

Hi colleendaydreaming,

 

Welcome to THE THREAD. I'm glad to see that you've got a lot of stamina and spunk. I wish you well on your visit to the neurologist. But as many who have posted here have said, their neuro's were less than supportive regardless as to how many corroborating studies are cited. They then tried the non-prescription supplement TUDCA with equal success.

 

Best of luck to you and please keep us posted.

 

Regards,

Fred


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. Stopped Aspirin and Supplements on 4/14/15 due to bleeding issues caused by kidney stones.


#908 geminik88

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Posted 16 May 2015 - 01:00 AM

http://www.ncbi.nlm....pubmed/25972546

#909 jds6958

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Posted 16 May 2015 - 10:08 AM

 

http://www.scientifi...and-parkinsons/


Edited by jds6958, 16 May 2015 - 10:09 AM.


#910 MrFritz

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Posted 17 May 2015 - 12:04 PM

 

 

 


Hi Unique Gem of the Forum (Geminik88) and Jon,

 

Thank you both for your posts. That was another extremely interesting read. The body of evidence continues to grow daily. It’s amazing how many researchers are doing studies on the same family of compounds and observing positive results. You may want to add this to your list:

 

The Unexpected Uses of Urso- and Tauroursodeoxycholic Acid in the Treatment of Non-liver Diseases.

 

http://www.ncbi.nlm....pubmed/24891994

 

To date, we must have at least 20 scientific studies and articles confirming TUDCA and UDCA’s short and long term safety and tolerability as well as its potential efficacy in treating neurodegenerative diseases such as Parkinson’s. It seems that every week, there is another new peer-reviewed study published in PubMed and new articles published in the scientific periodicals that further confirm this. Equally noteworthy is the fact that there are no studies or articles which contradict any of these findings or our experiences and assumptions.

 

Of course, missing are the human trial studies of TUDCA and/or UDCA for the treatment of Parkinson’s disease. But, then again, who needs that when we have already performed our own studies. There are at least 30-40 of us who know first-hand that it works to greatly alleviate many of our PD symptoms.

 

Some readers are following the advice of others who claim expertise saying that the use of UDCA or TUDCA is dangerous and will not relieve PD symptoms or slow its advancement. Of course they have never tried it for themselves. Yet of the many here who have tried it, almost all have told of its benefits and not one has confirmed any of the perils touted by the so-called “experts.”

 

As I have said before, currently there are no treatments for Parkinson’s, only drugs and eventually DBS to help alleviate its symptoms. You can be pro-active and try to help yourself or you can do nothing while watching your condition deteriorate. Most importantly, if TUDCA or UDCA does not help you, it certainly will not worsen your condition nor prevent you from taking that newly discovered cure should it ever arise within our lifetime.

 

Keep on posting your finds and if you're a user, updates on your experience. Thanks again.

 

Fred

 

 


Edited by MrFritz, 17 May 2015 - 12:06 PM.

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. Stopped Aspirin and Supplements on 4/14/15 due to bleeding issues caused by kidney stones.


#911 musicman

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Posted 17 May 2015 - 07:58 PM

2+ hours of reading...that is with skipping pages and wow!  First, interest in UDCA, then horror at some of the posts, then amusement (musicman keeping it light hearted).  This really is like a soap opera, or maybe a Shakespearian play.  Power, intrigue, back (and front) stabbing.  Plot, sub-plot, sideways plot.  Made up users, people with their own agenda for various reasons.  Too much intrigue to even mention! 

Somewhere in here is possibly useful information but I kept reading for the drama, I mean who could possibly turn away from this.  And I thought everyone was so supportive at all times on this nice blog.  Is this considered the dark web?

 

So, I went and ate a chocolate covered caramel (Mother's Day Present) and decided to jump in.  I'm not sure why, but what the heck. 

 

My husband's appointment with his neurologist is in two weeks, we'll ask about UDCA. 

I'm happy to find someone else who sees the interesting, crazy, wacky side of this thread. It really does have everything (and nothing) that you could ever want in a good drama...


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


#912 MrFritz

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Posted 22 May 2015 - 05:11 PM

ADDENDUM TO MY LAST POST

 

Not too long ago, I referenced a clinical study entitled “Tauroursodeoxycholic acid in the treatment of patients with amyotrophic lateral sclerosis” which was published earlier this year in the European Journal of Neurology. This study can be found at: http://onlinelibrary.../ene.12664/epdf

 

So why am I talking about an ALS study? As you may know, there are many similarities between ALS, Parkinson’s and a few other neurological diseases. Further, this particular study was of a clinical human trial of TUDCA for patients with ALS and it also notes some similarities between UDCA and TUDCA.

 

I have reprinted in blue below the two parts that I found most interesting. The first part deals with the mechanism as to how TUDCA may work in the treatment of ALS and the second part deals with the dosage of TUDCA given to these ALS patients.

 

If you read this study in detail, you will find that almost all recipients tolerated TUDCA with out issue. Of the very few who didn't, the reported issues were GI related.

 

About The Mechanism:

 

Tauroursodeoxycholic acid (TUDCA) is a hydrophilic bile acid that is normally produced endogenously in humans in the liver, by conjugation of taurine to ursodeoxycholic acid (UDCA). It is commonly used for treatment of chronic cholestatic liver diseases and for gallstone [6]. TUDCA possesses many additional ancillary features, including the inhibition of mitochondrial-associated apoptosis through different mechanisms [7]. Results of experimental studies suggest that the cytoprotective and anti-apoptotic action of TUDCA may be responsible for potential neuroprotective activity for a variety of chronic neurodegenerative conditions [8].

 

Ursodeoxycholic acid and TUDCA have been shown to strongly inhibit apoptosis in different types of cells, by either stabilizing the mitochondrial membrane or modulating the expression of specific upstream targets of apoptosis [9]. It has recently been shown that, in a cellular model of superoxide dismutase 1 neurodegeneration, glycine-conjugated UDCA inhibits nitrite production and prevents matrix metallopeptidase 9 activation [10]. These recent data have high relevance for human ALS. In this scenario, TUDCA may be a potential therapeutic candidate in ALS, due to its multiple mechanisms of cytoprotective actions which may include anti-apoptotic, immunomodulatory and antioxidant effects.

 

About Dosage Levels:

 

This study shows that treatment with TUDCA for 1 year at a dose of 2 g daily was associated with a slower deterioration of function in ALS patients.

 

Note: In my last correspondence with Dr. Bandmann, he was aware that I was taking 1200mg of UDCA per day. He remarked then that he believed that a significantly higher dose is warranted. But he never indicated just how much or why. Twice, I have experimented with 2400mg for a very short duration (3 days). Although I found no additional reduction of my symptoms at this increased dose, a higher dose may have other benefits such as a reduction or suppression of disease advancement. Just some food for thought.

 

Lastly, the conclusions of researchers conducting this study were very telling in that they said Our findings are consistent with an earlier observation hinting at a potential neuroprotective efficacy of biliary acids in ALS. In a recent publication, an oral soluble UDCA formula was tested for 3 months in ALS patients with a cross-over, randomized, placebo controlled design [28]. A relative slowing of the rate of progression was observed in the treatment group compared to placebo. These short-term data are in keeping with the present longer-term results using TUDCA, the taurine conjugated derivative of UDCA. This is in line with pre-clinical studies demonstrating that, both in vitro and in vivo, TUDCA benefits neurodegenerative disorders [29,30].

 

As with Parkinson's, Both UDCA and TUDCA are FDA approved but "Off-Label" for the treatment of any diseases other than those of the liver.

 

Fred


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. Stopped Aspirin and Supplements on 4/14/15 due to bleeding issues caused by kidney stones.


#913 Skiing

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Posted Yesterday, 11:45 AM

Hi fred
when did you last talk write to bandmann. He refused to talk to me. Unfoortunately

#914 MrFritz

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Posted Yesterday, 12:45 PM

Hi Skiing,

 

Sometime after reading Dr. Bandmann’s study and starting on UDCA (Ursodiol), I visited my VA neuro in order to obtain Azilect as well as Ursodiol from the VA at reduced costs. It turns out that my VA neuro knows Dr. Oliver Bandmann. So when I first contacted Oliver to thank him and tell him how Ursodiol has helped me, I also name dropped. Perhaps that’s why he replied. Subsequently, I periodically update him on my status as well as how others are doing.

 

It is important to understand that he is both a doctor and a researcher. You can discuss research matters with him. However, questions directly relating to you will go unanswered. He is not your doctor and he does not know you. Therefore he cannot ethically advise or prescribe for you.

 

In my last e-mail, I updated him again and referenced a study that I came across which contradicted all of the other studies that we have read in that it claimed that the long term use of UDCA may be harmful. His reply is reprinted below.

 

Fred

 

 

To: "'Fred'" <mrfritz@comcast.net>
Subject: RE: Addendum - Long Term UDCA Update
Date: Sun, 4 Jan 2015 15:31:24 -0000

Dear Fred,
 
Many thanks indeed for getting back in touch with me. I was fascinated to hear about your own experience and the experience of the other patients who have put themselves on UDCA or TUDCA.
 
So, as far as the dose is concerned I really wouldnt worry because of the rather strange paper you quote. It is full of misconceptions and poor interpretations of the literature. Truth be told, though, we simply dont know which dose would be best for PD patients. My fear is that a low/standard dose of UDCA may simply not be enough to achieve half-decent levels in the brain. Anyway, weve just put in a grant application to the Medical Research Council (MRC) the UK equivalent of the NIH, so to speak. If we get the money weve asked for 2million Pounds Sterling (approx. $ 3 Million Dollars), we will be able to do a proper clinical trial, including a placebo arm. Fingers crossed.
 
Very best wishes
 
Oliver
 
Oliver Bandmann, MD PhD FAAN
Professor of Movement Disorders Neurology/
Honorary Consultant Neurologist
Sheffield Institute for Translational Neuroscience (SITraN)
385a Glossop Road
Sheffield S10 2HQ

 


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. Stopped Aspirin and Supplements on 4/14/15 due to bleeding issues caused by kidney stones.





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