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URSODIOL - A Potential New Drug for PD

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#941 jds6958

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Posted 22 June 2015 - 04:03 PM

I've not has any freezing episodes yet. Like Jon, TUCDA does seem to help with muscle rigidity in my left arm. But I can't comment on whether or not it would help freezing or not. I don't recall hearing anyone who has taken it refer to that symptom negative or positive thus far.

 

Hi Rick...shot you a pm :)



#942 MrFritz

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Posted 22 June 2015 - 06:00 PM

The Placebo Effect

and other things

 

The placebo effect caused by [T]UDCA is a most amazing thing to witness. It appears that every [T]UDCA user experiences this as a side-effect of its use. It makes us think that our PD symptoms have improved when, in reality, they really have. Yet we continue to question it. <end of Joking>

 

Most of you have tried [T]UDCA and found it reduced or eliminated some or all of your PD symptoms. Then you stopped taking it and found that your PD symptoms returned. You then resumed [T]UDCA, and as before, your symptoms again improved. What more evidence is needed to logically assume that [T]UDCA has helped you and that you should continue taking it.

 

After 20 months of UDCA, I have just completed the rounds with most of my doctors. So here is an update on my health:

  • My Internist ordered a very comprehensive blood test. Everything (including liver and kidney functions) was normal except my PSA which has always been high. My cholesterol was good even though I had stopped Lipitor many months ago. [T]UDCA has been found to have a positive effect on cholesterol levels.

  • I recently had a minor episode of passing some kidney stones. Some small stones were also observed inside my bladder. My Urologist ordered an abdominal CAT scan with and without contrast. The scan report found no evidence of more stones. In addition, it showed that my liver and all of my other organs are AOK. He also did some urine tests which were also negative.

  • Tomorrow I start physical therapy for my back issues. In addition to some arthritis, I have 2 bulging and one herniated disk. So my life as a couch potato may be coming to an end.

  • Today I saw my Neurologist. In the beginning, he was seeing me every 3 months. At my last visit (6 months ago), he said “I would diagnose you with Essential Tremor. Come back in 6 months” Today he said “You’re looking great. Come back and see me in a year.” We also discussed [T]UDCA. He told me he has been reading up on it and he thinks it looks promising. But, he wouldn’t say if he would prescribe it for any of his other patients. Keep in mind that pre-UDCA this Neuro office signed off on my handicap parking permit because I was having problems walking (balance) and driving (hand tremors).

So, considering that I have PD, I think I’m doing great since starting UDCA. My test results confirm that after 20 months, it has not caused me any harm. Today, I find it hard to recall just how bad I used to feel, not to mention the depression I had knowing that I had an advancing terminal illness. Jon wants to know if any of us have stopped taking TUDCA. I doubt if he will find someone who has stopped. Everyone who has tried [T]UDCA reported a marked reduction of some or all of their PD symptoms. Yes, [T]UDCA isn’t cheap. But I would give up food before I would consider giving up my [T]UDCA. It’s my ticket to living my life again. 

 

* * * Salute a cent’anno * * *

 

Fred


Edited by MrFritz, 22 June 2015 - 06:08 PM.

71 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.


#943 gravdav

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Posted 22 June 2015 - 06:36 PM

great to hear, I've been diagnosed since 97' and I've never heard of this before. I'm going to ask my neorologist about it. thx Mr. Fritz.



#944 jds6958

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Posted 30 June 2015 - 11:42 AM

Thanks to all who responded.  The results of here and other places, all persons who started taking TUDCA and observed benefits continued to take TUDCA going forward, with the exception of one individual whose priorities were not PD but other more challenging health issues.

By the end of this year, I will have some exciting information to share.  Stay tuned... :) 



#945 sphynx

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Posted 01 July 2015 - 01:36 PM

Hi, everyone,

 

Eventually I saw a gastroenterologist yesterday. I am due to have an ultrasound scan of my gallbladder next week just as a precaution. However, the consultant did not object to me taking TUDCA, as he described it as a  rather Innocuous substance, with very few side effects and also rather ineffective when it comes to dissolving gall stones.

 

Therefore today I restarted the TUDCA, 600 mg per day  to start with.

 

I'll keep you posted on my progress.

 

Regards to all



#946 jds6958

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Posted 01 July 2015 - 01:59 PM

Hi, everyone,

 

Eventually I saw a gastroenterologist yesterday. I am due to have an ultrasound scan of my gallbladder next week just as a precaution. However, the consultant did not object to me taking TUDCA, as he described it as a  rather Innocuous substance, with very few side effects and also rather ineffective when it comes to dissolving gall stones.

 

Therefore today I restarted the TUDCA, 600 mg per day  to start with.

 

I'll keep you posted on my progress.

 

Regards to all

 

Wish you the best.

Where did you find 300mg pills?

 

600mg is a good start.  If you do not see any side effects with 600mg, most move to 1,000 to 1,200mg per day.

Take it with food if possible, especially if you are prone to heartburn. (TUDCA is a bile acid salt)

Please keep us updated.

 



#947 MrFritz

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Posted 01 July 2015 - 02:26 PM

Hi sphinx,

 

Thanks for updating us. We all wish you the best and hope that your results meet expectations.

 

As for starting with 600mg, it is the prudent thing to do. However, unless you have or suspect a problem with acid reflux, I think that you will be better served by not titrating your dose.

 

Fred


71 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.


#948 sphynx

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Posted 01 July 2015 - 03:38 PM

Hi, Jds and Fred,

 

Thank you for your advice and support.

 

I have started with 3 doses per day of TUDCA 200mg capsules. I do suffer from acid reflux, so thank you for your advice about taking it after food, although I deal with  my acid reflux by adding  Omeprazole to the mix !

 

Of course I shall gradually increase the dose of the TUDCA over time, preferring to start with a low dose and slowly titrating up.

 

Watch this space.

 

Anna



#949 jds6958

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Posted 01 July 2015 - 03:41 PM

Thanks Anna,

 

If you don't mind me asking, what brand of TUDCA are you using that comes in 200mg caps?  I have been tracking and testing different vendors.  I have not come across a 200mg version yet and I want to make sure that I include that source in an upcoming analysis.

 

jon



#950 MrFritz

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Posted 01 July 2015 - 04:03 PM

Hi Anna,

 

Thanks. Omeprazole should be okay. Just do not take anything for reflux that contains aluminum (i.e., TUMS, Rolaids, etc.).

 

Fred


71 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.


#951 sphynx

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Posted 02 July 2015 - 04:00 AM

Hi, Jon,  the TUDCA 200 mg capsules I am taking are made in the UK and are sold by www.tudca.com.

 

Fred, thank you for your advice on which antacids not to take.

 

 

Anna



#952 MrFritz

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Posted 02 July 2015 - 05:18 PM

 A Fly In The Ointment (Not)

 

I just read another new study entitled “Neurophysiology of Drosophila Models of Parkinson's Disease” which was published on April 20, 2015. These researchers were from the Department of Biology, University of York and The MRC Protein Phosphorylation and Ubiquitylation Unit, The Sir James Black Centre, College of Life Sciences, University of Dundee. The study can be found at: http://www.ncbi.nlm....les/PMC4414211/

 

Although this was not a study of UDCA or TUDCA as a treatment for Parkinson’s, it did make a significant reference to UDCA which I thought may be of interest to you. It said:

 

“More recently, we have also shown that a second drug, UDCA (ursodeoxycholic acid), which rescues mitochondrial function in LRRK2-G2019S fibroblasts, also ameliorates the DA → G2019S visual neurophysiological deficit. The impact of providing BMPPB-32 or UDCA to DA → G2019S flies after a phenotype has started to develop suggests that drugs like this may provide a disease modifying therapy as well as a preventative therapy. As UDCA is already licensed for liver disease, this is an exciting development.”

 

Yes, I know we’re not fruit flies. But I’m doing my best not to become their fodder either. So far, I think that I am succeeding. Every new study is further confirmation that we’re doing the right thing to keep our disease at bay while simultaneously not doing ourselves any harm.

 

Fred


71 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.


#953 PatriotM

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Posted 02 July 2015 - 07:45 PM

...so if you see a common fruit fly that has a dull looking face and a tremor in one leg, UDCA may be of benefit.

Seriously, if you want to take a drug off-label that might actually have a chance of working, why not try something like Isradipine which is at least in Phase III trials and has been supported by the MJF Foundation? Better yet, why not sign up for the clinical trial?

Diagnosed 9/2013

Not taking any PD meds (stopped taking Mirapex due to fatigue)

Using exercise to battle PD

Walk minimum of 12,000 steps a day which improves rigidity,balance, etc (everything but tremor)


#954 New normal

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Posted 02 July 2015 - 08:26 PM

I have no opinion regarding ursodial.....however, Amantadine.....to which I had a terrible reaction......was prescribed originally off label...and now commonly used for PD....yet was originally designed as an immunization for the bird flu. And dopamine was originally prescribed for meningitis......

No one really knows anything about anything.....it is just hard for me to try ANY drugs.....and harder for me to try drugs under the direction of people who are not licensed physicians.

No ill intent to anyone....just sayin.........
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily. Amantadine 100 mg 2x per day.
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy
Live, laugh, and be grateful. :) "ACCEPT, ADAPT, AND MOVE ON." :)

#955 MrFritz

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Posted 02 July 2015 - 10:24 PM

Hi New,

 

It's been a long time since we chatted. Sorry to have read some of your ups and downs. I do hope you're stable and feeling better now.

 

I recall that you picked up some Urso in Mexico and took 1 tablet. You told me then that it did something positive for you. What happened and why did you stop?

 

So it's harder for you to try drugs under the direction of people who are not licensed physicians. Okay. I accept that. But don't you take vitamins and other supplements which are not prescribed? So why not try taking another supplement called TUDCA?
 

Fred


71 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.


#956 New normal

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Posted Yesterday, 07:24 PM

Good question, Fred...I hope you,and your family are well..

I didn't want to get into,the whole,story...but yes, I took the ursodial for a couple of days...and I got improvement of symptoms....just like I,got improvement of symptoms when I took the coconut oil....

I stopped because I noticed change in bowel habits....AND I have a history of gall bladder disease...had my gall bladder removed....and have had high liver counts often...since it is likened or associated with bile products...and we really don't know how it works.......I chose not to continue.

Yes, I have tried several supplement regimens....and often they worked....my husband is a chiropractor and advised patients of supplements for nearly 30 years....so I had a basis.......but I don't know if it is apathy....or what...but I am dang sick of taking pills.....I exercise....try to have good nutrition...and working toward balance in my life....remove all stressors....but right now....I hate to admit I am not taking supplements. I just needed a break....I may resume again.

The success I,had with Ursodial was comparable to success I had with other regimens...so I am not able to say for sure any of them were totally effective or might have been placebo effect. I don't want to get into a debate about this....I only wanted to,point out that solutions for,diseases,have come from serendipitous beginnings....and unless someone takes on the project...such as,the character Robin Williams played in "Awakenings"...we,lose,the opportunity of discovery.

My symptoms,have advanced pretty quickly in the last few years...and I am going simple.....trying to reduce variables...so I can identify what is PD and what is not....I mentioned using a "doctors care" simply because "newbies" may choose to try things when they are still trying to get a handle on PD.

Fred...I admire you for,trying to help others...and perhaps I,shouldn't have posted....as I REALLY don't want to get into this discussion. I believe your intent is legitimate...and i thought my post was positive...not negative....

Good luck with your project...we all hope an answer is,found soon...
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily. Amantadine 100 mg 2x per day.
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy
Live, laugh, and be grateful. :) "ACCEPT, ADAPT, AND MOVE ON." :)

#957 MrFritz

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Posted Yesterday, 07:56 PM

Thanks New. I appreciate your posting. Everyone's experience, positive or negative, adds to our knowledge base.

Considering your gastrointestinal issues, I concur with your decision to stop UDCA. BTW, I also had my gall bladder removed. As for bowel issues, I too have cycles. But nothing extreme.

Stay well.

Fred

71 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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