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URSODIOL - A Potential New Drug for PD

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#201 musicman

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Posted 06 August 2014 - 04:12 PM

Fred, I did read the thread from the beginning, which is why I said it was interesting. I will say that I am following the advice of my Dr (Dr Okun, btw) who I trust as an expert, and know that he will advise me on the best route to take. I assume that if something comes along that sounds especially promising, he will suggest I try it. I WILL try some natural things maybe, on my own, provided they are not too off the wall (like freeze dried Yak lips), but I'm not gonna push anyone to give me an rx...........yet..........


Age 58. Diagnosed 7/14 by MDS and a DatScan. Currently display a right hand/arm tremor, as well as some stiffness. Apathy and sleep issues are a problem. Began Azilect 8/6/2014, and started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#202 MrFritz

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Posted 06 August 2014 - 05:09 PM

Hi PatriotM and Musicman,

 

Yes, Ursodiol is a 100% failure in that is does not replace one's PD medications. But you failed to see what and why I took it. To quote from the original article in Science Daily (see http://www.scienceda...30903123524.htm):

==========

Experts from the world leading Sheffield Institute for Translational Neuroscience (SITraN) conducted a large scale drugs trial in the lab using skin cells from people with this progressive neurological condition which affects one in every 500 people in the UK. The researchers tested over 2,000 compounds to find out which ones could make faulty mitochondria work normally again. Mitochondria act as the power generators in all cells of our body, including the brain. Malfunctioning mitochondria are one of the main reasons why brain cells die in Parkinson's. One of the promising medications identified though the research is a synthetic drug called ursodeoxycholic acid (UDCA).

==========

 

So, let me restate why I take UDCA and what it does for me. And, if Jenny doesn't mind adding to the conversation, she can tell you what it did/does for her. But please give her a few hours since it's early morning in Au.

 

I take UDCA to 1) rejuvenate any dormant (dying) neurons in my brain and 2) to prevent future neuronal death.

 

Did it work for me? The short answer is yes.

 

Within 36 hours of starting 600mg of UDCA, all of my tremors ceased. Conclusion: Increased dopamine production due to the rejuvenation of my dormant/dying neurons. Those neurons that are dead will forever remain dead. Therefore, I still need to take Sinemet to replace their loss.

 

Prior to starting UDCA, I felt my condition (tremors) growing worse day-by-day. I have been on UDCA since October 16, 2013. I'm still tremor free and I am still taking the same amount of medication. Conclusion: UDCA has significantly slowed or halted my PD's progression.

 

In addition: I have read a number of other studies that used TUDCA instead of UDCA and suggested similar results. TUDCA is sold throughout the US as a health food supplement. No prescription required. You can even order it via Amazon.

 

Just a note: If UDCA works for you, then the sooner you start taking it, the better your condition will remain. If it doesn't work for you, then simply stop taking it. No harm done.

 

If you have any other questions, please feel free to ask. I truly don't mind rehashing things.

 

Fred

 

P.S. for Musicman:

The researcher in Sheffield, England who did the original study in "Brain" that I referenced is Dr. Oliver Bandmann MD, PhD. Drop his name into Google if you want to know more about him. I think his credentials will speak for themselves.

 


Edited by MrFritz, 06 August 2014 - 05:24 PM.

70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#203 musicman

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Posted 06 August 2014 - 05:31 PM

Interesting, (although not about PD)

http://web.stanford....oxycholic-acid/

 

and this, related to PD

http://www.sciencepo...-and-mitophagy/


Edited by musicman, 06 August 2014 - 05:34 PM.

Age 58. Diagnosed 7/14 by MDS and a DatScan. Currently display a right hand/arm tremor, as well as some stiffness. Apathy and sleep issues are a problem. Began Azilect 8/6/2014, and started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#204 MrFritz

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Posted 06 August 2014 - 06:14 PM

So now you are becoming knowledgeable on the subject matter of this thread. I honestly hope that your eyes are beginning to open. As I have said before, G_d helps those who help themselves.

Fred

70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#205 musicman

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Posted 06 August 2014 - 06:33 PM

All I am saying is that it is interesting. I like looking into things. I don't poo-poo what I don't know anything about. Neither do I jump on board.


Age 58. Diagnosed 7/14 by MDS and a DatScan. Currently display a right hand/arm tremor, as well as some stiffness. Apathy and sleep issues are a problem. Began Azilect 8/6/2014, and started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#206 she-ra

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Posted 07 August 2014 - 08:09 AM

Regarding simvastin, here is a more recent article that quotes Dr.. Okun.  http://www.webmd.com...risk-study-says


Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#207 MrFritz

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Posted 07 August 2014 - 08:26 AM

Thanks Sheila. Now I know that I don't have to change to Simvastatin. But, neither of them helped to prevent my PD.

Fred

70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#208 musicman

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Posted 07 August 2014 - 12:39 PM

This was a very interesting article   http://www.scienceda...30903123524.htm

 

I don't see how taking TUDCA as a supplement could hurt anything, and they may find that it actually helps. It's over the counter and is very well tolerated. Might be good for someone like me that is newly diagnosed with very limited symptoms. The question would be, at what dose will it be of any possible benefit? No one knows THAT.....

 

"The results of the ground breaking study are published in the leading Neuroscience journal BRAIN.

Dr Kieran Breen, Director of Research and Innovation at Parkinson's UK commented: "This is a really exciting time for Parkinson's research. For the first time, we are starting to identify drugs that will treat the Parkinson's -- possibly slow down or halt its progression -- rather than just the symptoms.

"This will bring us closer to our ultimate goal of a cure for Parkinson's. We look forward to working closely with Dr Bandmann to develop this treatment."


Age 58. Diagnosed 7/14 by MDS and a DatScan. Currently display a right hand/arm tremor, as well as some stiffness. Apathy and sleep issues are a problem. Began Azilect 8/6/2014, and started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#209 MrFritz

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Posted 07 August 2014 - 02:41 PM

Musicman,

 

Welcome to my ongoing experiment. I'm very glad to see that you're reading, thinking and have an open mind. Starting from my very first post, I have provided links to studies that corroborate what I have been saying. I have also been 100% truthful about my condition and what UDCA has done for me. I'm also careful to separate fact from conjecture.

 

Two other forum members have tried UDCA with results similar to mine. They posted their stories within this thread. Sadly, one of them ceased taking UDCA claiming headaches as a side effect. He stopped and the headaches ceased. The other is still on UDCA (Urso). A few others have communicated with me privately and may post their stories at sometime in the near future. I do respect their privacy.

 

UDCA and TUDCA are almost one in the same. Both are used for identical purposes. There are no human studies or clinical trials for PD. For PD, the only studies are on mice or skin cells. However, I read enough in the study published in Brain to decide that I wanted to try Ursodiol. There's no need for me to reiterate my story again.

 

I believe that that both UDCA and TUDCA have the same suggested dosages. What I can tell you is that I started with 600mg (300mg 2x/day) of UDCA and had great results. Only when I experimented with stopping my PD meds did I find that 1200mg (300mg 4x/day) provided me with an additional benefit. So I have remained on 1200mg. Jenny in Au started at 1,000mg (250 4x/day) and has remained at that level. My recommendation is to start at 500-600mg and then, if tolerated, go up to the "standard" dosage (1200-1500mg). Do not even consider stopping or reducing any of your current PD medications. All 3 of us who have tried this have met with failure.

 

As for who should or should not try this regimen, nobody knows. However, if it is slowing or stopping PD's progression, then the sooner one starts, the better. Those with more advanced PD may benefit too. Again, if it does not help you or if you do have a side effect, simply stop taking it. As for PD drug interactions with UDCA, I couldn't find any.

 

Fred

 

 

 

 


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#210 musicman

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Posted 07 August 2014 - 04:45 PM

Fred, I'm doubtful that I would ask my Dr to write an off label rx for something, but I may try an over the counter supplement. Oddly enough, I think UDCA (rx) and TUDCA are the same thing. Maybe that's why your dr didn't have a big problem with it. I agree with others here that NO doctor should willy-nilly give you an rx just cos you asked for it. I'm surprised your dr didn't just say to you to get the TUDCA otc from somewhere, rather than take a risk like that. In any event, glad it helped you and who knows.....I may try TUDCA. I mean, WTH?


Age 58. Diagnosed 7/14 by MDS and a DatScan. Currently display a right hand/arm tremor, as well as some stiffness. Apathy and sleep issues are a problem. Began Azilect 8/6/2014, and started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#211 MrFritz

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Posted 07 August 2014 - 06:03 PM

Although UDCA & TUDCA are very similar, they are not the same. However, for our use, you may be correct. As to why one requires a prescription and the other doesn't is senseless in my opinion especially considering how harmless these products are. Anyway, the first thing we learn about PD is that everyone's PD is different. So what works for one may or may not work for others.

 

If you do take the plunge, check the label carefully before buying to be sure that you are getting pure TUDCA without any other added ingredients. Many of the supplements do have other ingredients. You may want to check out Amazon. As for dosage, I think my recommendations are sound.

 

Please take careful notes and, good or bad, please let everyone know your results. Thanks & good luck.

 

Fred

 

P.S. - Don't be going off or on your Azilect while trying TUDCA. It may only confuse the issue.


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#212 MrFritz

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Posted 15 October 2014 - 09:28 AM

============================================================================== 

 

* * *   H A P P Y   A N I V E R S A R Y   T O   M E   * * *

 

==============================================================================

 

 

October 16, 2014 marks my one year anniversary with UDCA. I have not posted here in some time because I had nothing new to report. That’s the very good news.

 

I have noticed that this thread has reached a very large audience, most of those people reading in this forum never post any comments. They are obviously avid readers who wish to remain anonymous. I’m fine with that. My only goal was to get the word out in order to try and help others. In that, I know I have succeeded.

 

Below is a recap of all that has transpired to date and my current status. For those reading this thread for the first time, there is no need to read any of the earlier posts. As always,  I will gladly answer any questions posted to this thread or sent directly to me at mrfritz@comcast.net. I do respect your privacy.

 

Fred

 

mrfritz@comcast.net

October 15, 2014 

 

====================

 

All of us have PD or are caring for someone with PD. Each person is different both in expressed symptoms as well as in their responses to the various available treatments and the disease’s progression. Unfortunately, there is no one definitive cause of PD nor is there any cure on the horizon. Currently, there are some clinical studies looking at various treatments to halt or slow Parkinson’s insidious progression. But, while we’re waiting on them, which could take many years, I will continue taking UDCA which has helped me to both significantly reduce my PD symptoms as well as to greatly slow or halt its progression. During this past year, I have learned that I also had a number of other PD symptoms that I didn't know were Parkinson’s related.

 

Self-description: I am a 70 year old married Caucasian male. After smoking 3½ packs a day for 35 years, I stopped smoking 22 years ago and gained 50 pounds which I have never shed. I do not adhere to any particular type of diet. I consume a lot of fats and carbs. Currently, I do not take any supplements except for 1000mg D3. I’m a couch potato who has never exercised and I rarely even go out for a walk. So much for my healthy lifestyle :razz: 

 

Before I started UDCA, my symptoms were as follows:

 

            Loss of sense of smell 15+ years before dx.

            Shuffling gait, toe dragging and balance issues.

            Sleep Disorders: REM sleep behavior disorder (acting out dreams during sleep), Periodic leg movement disorder (PLMD),

              Restless legs syndrome (RLS), Nocturia (frequent nighttime urination)

            Periodic blurry vision causing extreme difficulty driving at night due to glare.

            Dominate right hand tremor causing great difficulty to write, use a computer mouse, type and steer a car.

            Periodic whole body tremors

            Facial masking

            Feeling my disease progressing quickly on a daily basis

 

Before I started UDCA, my list of medications were as follows:

 

            100mg Losartan for High Blood Pressure

            5mg  Amlodipine for High Blood Pressure

            10mg  Lipitor to improve my LDL/HDL ratio (my LDL is normal but my HDL is low)

            81mg Baby Aspirin

            1mg  Azilect to slow PD’s progression

            6 tabs  25/100 Carbidopa/Levodopa for PD tremors and other symptoms

            1mg Clonazepam for PD sleep disorders

 

Note: I do not take any of my medications based on the time of day. I take all of my medications after each meal and before bedtime.

 

What happened when you first started taking UDCA? Before I started UDCA, I was already starting to learn to use my left hand for writing and to control my computer’s mouse. Also, I was preparing to give up driving because of my blurry vision especially at night due to glare and difficulty staying in lane due to my tremor. I had already moved myself into our spare bedroom so as not to disturb my wife due to my sleep disorder. I was depressed due both to my current condition but mostly due to my future prognosis. Approximately 24 hours after I started taking UDCA, almost all of my symptoms abated. Both my wife and I were awed by the results. They were far beyond any expectations.

 

What do you think UDCA is doing? Based on the literature that I have read, PD is the result of neurons in the dopamine producing region of the brain shutting down. These neurons are either dormant (dying) or already dead because their mitochondrial organelles (the energy producing engines in each cell) have ceased working properly thereby denying the neuron the “food” that it needs to stay alive and continue to produce dopamine. No one knows why this happens. UDCA appears to rejuvenate the mitochondrial organelles in those dormant and dying neurons thus allowing them to restart their dopamine production. This is what causes the immediate reduction in symptoms. The deficit in dopamine caused by those neurons that are already dead must be replaced by medication because the brain does not regenerate new neurons. That is why you cannot stop your current PD medications. The continued use of UDCA appears to help protect against any further neuronal damage thus halting or greatly slowing PD’s insidious progression.

 

          Reference:

 

                    The article in Science Daily that first got my attention:

                         http://www.scienceda...30903123524.htm

 

                    The study that the article referenced:

                    Ursocholanic Acid Rescues Mitochondrial Function in Common Forms of Familial Parkinson’s Disease

                    http://brain.oxfordj...awt224.full.pdf

 

Are you still taking UDCA and what medications and symptoms do you have today? Since I started UDCA, I have been able to stop taking Clonazepam for my sleep disorders. I have added 2 tablets (400mg) of Advil (Ibuprofen an NSAID) daily at bedtime. This reduces my discomfort level caused by my Arthritis and bulging/herniated discs. Although I do not understand the mechanism, the Advil seems to have alleviated most but not all of my sleep disorder issues. My Neuro advised me to continue this regimen since it works for me and is not causing me any stomach or other issues. On those days when my discomfort level is higher, I will take 75mg of Diclofenac (similar to Aleve but stronger) instead of the Advil. It does a better job on the Arthritic discomfort and also seems to alleviate my sleep disorders. Because it spikes my already high BP, I only take Diclofenac sparingly when needed.

 

Do you experience “down time?” No. Prior to UDCA I had constant tremors so, I was always down. Since UDCA, I have not experienced down time even when I inadvertently miss a dose. I do not know if this is just me or if it’s a result of the UDCA.

 

As for my current symptoms, a little background info is necessary. [Beware the ides of March they said. But, I didn't listen.] Those of you who have followed my blog know that I tried to stop all of my PD medications (except for the 600mg per day of UDCA) last March. By April Fools Day (very apropos) I was PD drug free. Prior to stopping all of my PD meds, I was almost symptom free. After I stopped, my tremors started to return. I found that if I increased my UDCA from 600mg to 1200mg per day, my tremors were again reduced. Beyond 1200mg, there was no additional benefit. However, after a month without taking any PD meds, the Sinemet had flushed completely out of my system and I became a basket case. All of my tremors returned. However, they were still less than they had been before I started UDCA. I then had my Neuro perform a full PD evaluation so I would have a good baseline going forward. Subsequently, I resumed all of my PD meds except for the Clonazepam. Most of my tremors again disappeared. However, I was left with an intermittent slight action tremor in my dominate right hand. It annoys me at times but it is very livable. I guess that’s the price I paid for experimenting on myself. To date, I continue to take 1200mg UDCA.

 

So what exactly is UDCA? UDCA is a bile acid. Chinese medicine has used animal bile for hundreds of years as a medicine to treat "heat" illnesses. It was used to relieve spasms, reduce fever, and improve visual acuity. Bile is naturally synthesized via cholesterol, consisting of compounds including TUDCA (Taurochenodeoxycholic Acid), UDCA (Ursodeoxycholic Acid), and CDCA (Chenodeoxycholic Acid or Chenic Acid). UDCA and TUDCA were first synthetically developed in 1954 in Japan. UDCA is typically dispensed by prescription as a 300mg capsule (Ursodiol) or a 250mg tablet (Urso). FYI: Urso is available in Mexico without a prescription and you can legally bring it into the US provided you state that it is solely for your own use. Just a footnote: There is a relatively new pill on the market to replace Lipitor. It’s called Welchol (Colesevelam Hcl). It too is another bile acid with similar side effects as UDCA yet recommended for long term use. There is also some research suggesting that UDCA may be of some benefit for other neurological conditions such as Alzheimer’s. These bile acids are amazing.

 

Is UDCA safe for long term use? There are numerous clinical studies demonstrating that the long term use of UDCA is very well tolerated in the vast majority of the population without experiencing any side effects. The most common side effects, should they occur, are diarrhea and headaches which cease when you stop taking UDCA. Many people with liver disorders are on long term regimens of UDCA and 1200mg is considered a safe “standard” adult dose.

 

UDCA is a drug for liver disease. Why should I take it for Parkinson’s? Many drugs were created to treat one specific ailment. Subsequently, someone successfully tried using it off-label to treat some other disorder. Have you seen the 1990 movie “Awakenings” with Robert De Niro and Robin Williams? It’s based on a true story about a doctor who finds himself with a ward full of catatonic patients (encephalitis survivors). He is disturbed by them because they have been catatonic for decades with no hope of any cure. He tried treating them with what was then an off-label drug for Parkinson’s called Levodopa (L-Dopa). The rest is history.

 

Why should I try UDCA for my PD? Maybe the question should be rephrased to read “Why shouldn’t I be able to try UDCA for my PD?” We all have PD which is a terminal illness with no known cure or treatment to slow or halt its progression. The long term prognosis isn’t very pretty. All that medical science can do for us today is to try to treat its symptoms. It’s the long term severity of PD’s symptoms that we all fear. So if a relatively harmless drug is readily available that won’t cause any permanent harm but may help to slow or stop your PD’s progression and/or reduce its symptoms, why not be allowed to try it? If it doesn’t work for you, what have you lost? Conversely, if it does help you, look at what have you will have gained?

 

Besides you, has anybody else tried UDCA for PD? Yes. And for those whom I know of, it has worked as it has for me. Only one person has stopped citing headaches as a side effect. You can read Jenny’s posting from last April in her own words at http://forum.parkinson.org/index.php?/topic/15448-ursodiol-a-potential-new-drug-for-pd/?p=68173 As of today, She is still taking 1,000mg of Urso per day in 4 doses. Like me, she expects to continue taking UDCA for life.

 

What about TUDCA? TUDCA is a very closely related non-prescription compound which is in the same class as UDCA. However, it is considered to be a supplement and can be purchased in most health food stores. Although the literature indicates that it may work like UDCA, I do not know of anyone with PD who has tried it in earnest.

 

How much UDCA should you take? You may want to start with 500mg - 600mg to see if you tolerate UDCA. Then, increase your dose to 1,000mg to 1250mg per day taken as 4 doses, one dose after each meal and one dose prior to bedtime (preferably after a light snack).

 

Does UDCA replace my current PD medications? NO!!! You should continue to take all of your other medications as prescribed. Under no circumstances should you try to reduce or stop your PD medications without your doctor’s consent.

 

Does UDCA interact with my current PD medications? I’m not aware of any interactions with PD medications. But please check all your medications before using. Note that while taking UDCA, you should not take any antacids containing aluminum.

 

Fred

October 15, 2014

mrfritz@comcast.net


Edited by MrFritz, 15 October 2014 - 09:35 AM.

70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#213 Linda Garren

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Posted 11 November 2014 - 12:44 PM

Fred, I'm going to give it a try.  Thanks for continuing to re-post your information in case others haven't seen it.  I appreciate your having shared it with us.


Age 67.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the institutions.
Diagnosed with PD summer 2014.  11/2 25/100 Sinemet 3 times day.  50mg Turmeric & Bromelain daily.  200mg Ubiquinol. To start PT, speech therapy, exercising soon.  Lumosity on line.
Take 0.75 clonazepam and 0.5 mg melatonin nightly to help with sleep.  If awake early, I drink cup heated milk (and sometimes 5 mg melatonin) and read until go back to sleep.
For polycythemia vera I take 500 mg hydroxyurea daily, plus 81mg aspirin, and I get phlebotomies every 4-6 weeks. 
For clinical depression take 90 mg duloxetine HCl DR and 300 mg buprioprion Hcl XI daily.
Prilosec 20.5 mg daily for esophageal spasm, hiatal hernia, acid reflux
100 mg. doxycycline and clindamycin topical gel for borrelial dermatitis
Drink kefir daily.  Eat mostly organic,   Drink filtered water throughout day.  Going toward Mediterranean diet.  Take 5000 Vitamin D3 daily
Aim for 9 hours sleep per night to help with all above medical diagnoses and for Chronic Fatigue Syndrome
Annual MRI for meniongiomas

 


#214 Linda Garren

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Posted 13 November 2014 - 03:58 PM

Has anyone looked at some of the warnings and potential side effects of taking Ursodiol?  I'd really recommend it.  Here is one reliable site, FYI:

 

http://www.ncbi.nlm....details#warning

 

I have to say that unfortunately I'm not sure I want to risk several of the potential side effects it could cause.  I am already concerned that there is something going on either with the meds I'm taking, but more likely with my  heart or kidneys, as per my MDS.   My feet having been swollen and red for several weeks.  I see my internist tomorrow as a first step toward testing and/or being referred to another doctor.  Odd, because I had a fairly thorough workup of my heart and kidneys and other innards :-) about a year ago, or less.  Things checked out okay.  So, who knows....


Age 67.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the institutions.
Diagnosed with PD summer 2014.  11/2 25/100 Sinemet 3 times day.  50mg Turmeric & Bromelain daily.  200mg Ubiquinol. To start PT, speech therapy, exercising soon.  Lumosity on line.
Take 0.75 clonazepam and 0.5 mg melatonin nightly to help with sleep.  If awake early, I drink cup heated milk (and sometimes 5 mg melatonin) and read until go back to sleep.
For polycythemia vera I take 500 mg hydroxyurea daily, plus 81mg aspirin, and I get phlebotomies every 4-6 weeks. 
For clinical depression take 90 mg duloxetine HCl DR and 300 mg buprioprion Hcl XI daily.
Prilosec 20.5 mg daily for esophageal spasm, hiatal hernia, acid reflux
100 mg. doxycycline and clindamycin topical gel for borrelial dermatitis
Drink kefir daily.  Eat mostly organic,   Drink filtered water throughout day.  Going toward Mediterranean diet.  Take 5000 Vitamin D3 daily
Aim for 9 hours sleep per night to help with all above medical diagnoses and for Chronic Fatigue Syndrome
Annual MRI for meniongiomas

 


#215 MrFritz

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Posted 17 November 2014 - 06:11 PM

Hi Linda,

 

Sorry for this very late reply. I never received an email notification that someone had posted on this thread.

 

I don't want to ho-hum your concerns. But do keep in mind that everything, even the common aspirin (see: http://www.ncbi.nlm....ls#side_effects), has "potential" side effects and is contraindicated for some people. However, most people do not experience any of these. For those that do, the side effect is most typically minor. Should you encounter a side effect, simply stop taking it and the side effect goes away without any lasting issues.

 

You are doing the right thing in questioning if it is contraindicated for you based on your current medications and medical history and consulting with your Internist. However, be aware that your Neuro and probably your Internist too will have no first hand knowledge on this medication. As for me, I can only relate my personal experience.

 

I can point you to a number of clinical studies showing that the long term use of UDCA is well tolerated by most. Please have a look at the beginning of this clinical study of Ursodiol by Dr. Parry entitled "Safety, Tolerability, and Cerebrospinal Fluid Penetration of Ursodeoxycholic Acid in Patients With Amyotrophic Lateral Sclerosis" which can be found at http://www.rattlebra...c Acid 2010.pdf.

 

Fred


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#216 Linda Garren

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Posted 17 November 2014 - 06:33 PM

Thank you, Fred.  I will definitely read it.  I have so much going on with me medically that I'm just concerned about some of warnings given.  I'm glad you understand, and I'm glad you responded to my concern.

 

I sure want to try it, though.  I'll read and see what I think....


Age 67.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the institutions.
Diagnosed with PD summer 2014.  11/2 25/100 Sinemet 3 times day.  50mg Turmeric & Bromelain daily.  200mg Ubiquinol. To start PT, speech therapy, exercising soon.  Lumosity on line.
Take 0.75 clonazepam and 0.5 mg melatonin nightly to help with sleep.  If awake early, I drink cup heated milk (and sometimes 5 mg melatonin) and read until go back to sleep.
For polycythemia vera I take 500 mg hydroxyurea daily, plus 81mg aspirin, and I get phlebotomies every 4-6 weeks. 
For clinical depression take 90 mg duloxetine HCl DR and 300 mg buprioprion Hcl XI daily.
Prilosec 20.5 mg daily for esophageal spasm, hiatal hernia, acid reflux
100 mg. doxycycline and clindamycin topical gel for borrelial dermatitis
Drink kefir daily.  Eat mostly organic,   Drink filtered water throughout day.  Going toward Mediterranean diet.  Take 5000 Vitamin D3 daily
Aim for 9 hours sleep per night to help with all above medical diagnoses and for Chronic Fatigue Syndrome
Annual MRI for meniongiomas

 


#217 MrFritz

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Posted 23 November 2014 - 03:40 PM

Linda,

 

I just happened to go back and re-read your post and my reply. I see in your list of meds, "Prilosec 20.5 mg daily for esophageal spasm, hiatal hernia, acid reflux."

 

I jJust wanted to say that Ursodiol may not be for you because of the acid reflux. Ursodiol is a bile acid. Make sure you discuss this with your Gastro if you have one or, at a minimum, your Internist.

 

Regards,

Fred


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#218 Linda Garren

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Posted 23 November 2014 - 03:57 PM

Linda,

 

I just happened to go back and re-read your post and my reply. I see in your list of meds, "Prilosec 20.5 mg daily for esophageal spasm, hiatal hernia, acid reflux."

 

I jJust wanted to say that Ursodiol may not be for you because of the acid reflux. Ursodiol is a bile acid. Make sure you discuss this with your Gastro if you have one or, at a minimum, your Internist.

 

Regards,

Fred

 

Hi, Fred.  Thanks for your post.  That was actually something I did see when I had gone on line to find out more about Ursodiol and was the reason I suggested people be sure to look at possible side effects or interactions, etc.  I appreciate your concern.  Thanks.


Age 67.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the institutions.
Diagnosed with PD summer 2014.  11/2 25/100 Sinemet 3 times day.  50mg Turmeric & Bromelain daily.  200mg Ubiquinol. To start PT, speech therapy, exercising soon.  Lumosity on line.
Take 0.75 clonazepam and 0.5 mg melatonin nightly to help with sleep.  If awake early, I drink cup heated milk (and sometimes 5 mg melatonin) and read until go back to sleep.
For polycythemia vera I take 500 mg hydroxyurea daily, plus 81mg aspirin, and I get phlebotomies every 4-6 weeks. 
For clinical depression take 90 mg duloxetine HCl DR and 300 mg buprioprion Hcl XI daily.
Prilosec 20.5 mg daily for esophageal spasm, hiatal hernia, acid reflux
100 mg. doxycycline and clindamycin topical gel for borrelial dermatitis
Drink kefir daily.  Eat mostly organic,   Drink filtered water throughout day.  Going toward Mediterranean diet.  Take 5000 Vitamin D3 daily
Aim for 9 hours sleep per night to help with all above medical diagnoses and for Chronic Fatigue Syndrome
Annual MRI for meniongiomas

 





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