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MrFritz

URSODIOL - A Potential New Drug for PD

1,138 posts in this topic

Holey Moley...I wish we had some beer and pretzels and could look into each other's eyes...this is sounding like one of my Irish family reunions...gotta luv the spirited exchange!!

 

I am going to look for a neuro who will consider allowing me to decide if I want to become an anecdotal experience or if I want to remain among the numbers of conventional data. Ya gotta luv the diverse personalities and approaches here on the forum....or at least respect them. Some of you have had a positive history among physicians...some of us have not. Some people believe and trust in statistics...some of us do not. That makes for a great society....and a great forum discussion.

 

My aunt died of ovarian cancer at a very young age after being sterilized by X-ray. My daughter was diagnosed with a degenerative brain disease at 4 years old, over medicated for three years until a second opinion disclosed a mis reading of her EEG's., and the side effects of the medicines were being interpreted as brain dysfunction. The error in judgement was by the BEST of neurologists at the time in a highly respected research hospital. The second opinion from another research hospital. She is now a college graduate, mother of six children, and extremely happy and healthy, totally un medicated...and ironically, married to a physician. :)

 

A generation of women have died or been mutilated by breast cancer after taking inordinate amounts of estrogen hailed as the first "safe" birth control, not to mention the millions of women who willingly ingested the same horse urine (estrogen) to manage their menopause. Oh, then there are the unnecessary tonsillectomies, hysterectomies, appendectomies, and circumcisions that were pervasive from decade to decade. We could add the excessive use of antibiotics to the point of developing germ strains resistant to cure...uhhhh, I won't continue...I can hear the mumblings of the faithful medical followers....

 

We all can champion modern medicine...I am not about to enter THAT debate...but for those of us who have seen the medical flavors of the month change and cycle.....as diet, nutrition, and health theories regurgitate every decade...we become just a LITTLE skeptical of whatever is touted as the current cure.

 

As I enter this arena, and the accepted PD protocol is 1. medicating symptoms with rx that potentially have dramatic side effects or 2. drilling holes into the skull , electric wires into the brain, and a "neuro pace maker" in your chest, I begin to think that a little investigation into less invasive treatment is warranted.

 

It is hard for me to dismiss anecdotal success from "off label" rx or dietary success with cocanut oil, when NO ONE knows the cause of the loss of dopamine in the brain.....NO ONE....so how can ANYONE say what is effective and what is not?? The medical community is still invested in symptom control...I.e. DBS....what Fred is suggesting...and I have alluded to is that MAYBE for SOME people there can be a metabolic mechanism...I.e. Ursodiol or coconut oil....that just MIGHT help .... For after all, l-dopa itself was an off label use for Parkinson...do we not remember, Awakenings, where the drug was successful for ENCEPHALITIS ....then found helpful for PD. kinda like a liver rx, working for tremors in SOME people.....?

 

Pioneers of dramatic changes in rx protocol have shouted from the roof tops and waved the flags....and some have actually been heard above the economic influences that often deafen the sounds of discovery.....I consider Fred to be among them....

 

Fred, I respect you for continuing to share your info ...it takes energy and time...and you pry have to adjust your blood pressure rx from time to time...but, thank you for wanting others to benefit as you have....i believe you are genuine in wanting others to reap the same benefits. You have been careful to always state this is only yr opinion....informative only...and you reap no reward other than knowing you have "spread the word" and it may help someone.

 

I for one think this is definitely a method I want to try. You motivate me to explore and seek....it is empowering to think I can try options.

 

You are a good man, Fred.... Thank you for your time.

 

I will seek a new neuro...and I don't drink, but IF I did, I'd raise my glass to you....and I would buy another round for those in this discussion....deep breath, guys...deep breath. :)

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My first, and only, comment on this thread is that I have followed it with interest, and believe that Fred has done nothing more than inform people of something he has tried and believes works for him.  Philosophically, in a free society, he should have every right to do so, and in a society where free speech is supposedly guaranteed he should also be able to write about his experience.  That doesn't mean the NPF has to give him a forum, but it does mean that he has acted in an ethical manner as  free man.  I admire his willingness to take the risks that he has, and I hope this works out for him.  I believe that the FDA, with its risk averse paternalistic approach, is likely responsible for far more death and pain in refusing to allow people with terminal and debilitating conditions to experiment with medications than are men like Fred who merely write about their own experiences.As free moral agents we should each have the right and ability to choose non-standard treatments, as long as we understand that we bear the full risk and responsibility for bad outcomes.  

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Hey Fred - Here's this guy again with some good advice for those who receive annoying emails from naysayers on serious subjects -  and he's a preacher muchless.  Enjoy The right reverand Dr. Mike Murdock in this 'mentorship moment" clip:

 

http://forum.parkinson.org/index.php?/topic/4388-so-much-for-miracles/?hl=murdock#entry46462

Edited by Rogerstar1

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Dear Friends,

 

Thank you. To Ms. New normal: Your post almost brought me to tears. To Roger: I truly appreciate your continued support as well as that of the rest of this community. To Daven: Be a naysayer but know this: I am getting richer by the day. No, not from Ursodiol sales but from the knowledge that I have been able to help no less than 2 other people. But let me encourage you to continue being a devil's advocate because it helps keep the discussion alive.

 

As I have stated, to date I have received private emails from 2 people telling me that they have tried Urso with great success. I am confident that there are others who have also tried it but are keeping quiet for whatever reasons. But know this: If 1 person tried this and had no benefit, I would have been flamed.

 

My only wish is that the 2 people that have been helped (and, if there are, any other) would post their story to this thread for the remaining naysayers.

 

I am not a religious man. Far from it! But bless you all. Okay, I'll even include Christie and Daven in that :-)

 

Fred

Edited by MrFritz

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I appreciate you sharing your story. Gives me one more thing to talk to my doctor about!

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Dear Fred,

 

I think you're glad to know that I am taking 300 mg of ursodeoxycholic acid 2 times a day for 6 months without miraculous healing of PD.

However I think I can say that it is not worse.

I had no side effects.

 

Discipulus

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Hi Discipulus,

 

No, I am NOT GLAD to hear that it didn't work for you. But I am very thankful to you for posting this. We all know that everybody's PD is different as is their medications and dosage levels. No drug or treatment works for 100% of the population.

 

The fact that you did not have any side effects confirms my hypothesis that the vast majority of people will not experience any side effects. I am surprised though that you took it for 6 months. For others who may wish to try this, it will most probably show  results (if there are any to be had) within 2 or 3 days. I would suggest to give it a week at most. As for dosage levels I think 600 is the minimum but if your a big guy like me (100kg+), 900mg to 1000mg may be better.

 

Just a note about my progress. When I stopped my meds, I said that a slight tremor returned to my right hand. Although tempted to do so, I have not increased my dosage of Ursodiol. I'm still taking 600mg/day. However, the tremor has subsided some. Hopefully, it will pass completely. If it doesn't, I will up it to 900mg/day. I can't wait to see my Neuro's reaction.

 

Fred

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Sharing my recent correspondence with Dr. Oliver Bandmann:
( http://www.shef.ac.uk/neuroscience/staff/bandmann )

 

 

Dear Fred,

 

Many thanks indeed for contacting me. I’m truly fascinated to hear about your own personal experience as well as the experience of some other PD patients with UDCA/Ursodiol. The key things to learn for me are that 1) Most PD patients appear to tolerate UDCA quite well and 2) it doesn’t seem to make it worse! As you can see, I am always on the cautious side when it comes to interpreting data...

 

I hope you understand that I can’t really comment on your individual case either. Unfortunately, we still haven’t got the money to undertake a formal clinical trial but we are working very hard towards it.

 

Please do get in touch again with me in a few months to let me know how you’re doing.

 

Best wishes and my regards to Dr xxxxxxx

 

Oliver
 

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IMPORTANT UPDATE RE MY CURRENT STATUS [ Referencing back to my prior posts #93 & #94 on April 2, 1014 ]

 

I have been 100% PD drug free since April 2nd.  The tremor that returned to in my right hand, as I stopped my meds, had not abated as hoped and my wife wanted me to restart my Sinemet and/or talk to my Neuro. I explained again why I don’t want to go back on Sinemet & she understands.

 

I was taking 600mg of UDCA (Short for Ursodiol or Urso). After breakfast yesterday morning I decided to increase my dosage of UDCA to 900mg. By dinner time, there was no change in my condition. After dinner I took an additional 300mg. By 10 PM, I felt a "change" (hard to describe) and a significant lessening of my tremor. This morning, I took 1200mg of UDCA after breakfast. Because my UDCA is in capsule form, I can only change my dosage in 300mg increments. So far, my tremor has subsided and I am happy with the results. I intend to continue on a 1200mg/day dosage without Sinemet. I'll keep you posted if anything changes.

 

Yesterday afternoon, I had an interesting discussion about UDCA with my son-in-law's brother who is an MD/PHD specialist in Gastroenterology at a major New York City teaching hospital. He was well versed about UDCA and Liver Disease but knew nothing about its relationship to PD. He confirmed the following: For liver disorders, the "standard" dosage is 12mg to 15mg per day per kg of body weight and there are patients on long term maintenance with UDCA without any ill effects.

 

What have I learned to date (my assumptions and opinions).

  • If possible, you should be trying UDCA with your doctor's support. Preferably a Neurologist.

  • UDCA is not a cure for PD. It is a treatment for PD and its symptoms.

  • UDCA appears to halt PD's progression whereas Sinemet is only a treatment for some of PD's symptoms.  While on UDCA and Sinemet for 5 ½ months, my condition remained unchanged.

  • UDCA will not work for everyone but there is no harm to be had in trying. As per Bandmann, et al, "The naturally occurring compound ursolic acid and the licensed drug ursodeoxycholic acid are chemically closely related to ursocholanic acid and dehydro(11,12)ursolic acid lactone. All four substances rescue mitochondrial function to a similar extent in parkin-mutant fibroblasts, suggesting a class effect."

  • UDCA does not interact with any PD medications and most people, even those on long term usage, do not experience any side effects.

  • A starting dosage of 600mg appears to be the minimum but as much as 1200mg may be necessary. Afterwards, if you still have unlivable symptoms, you can increase your dosage but stay within the recommended "standard" dosage of 12 - 15mg per day per kg of body weight. For me (being 105kg), that would mean a maximum dosage of 1200mg to 1600mg per day. Based on clinical studies (Parry, et al), larger dosages appear to be safe and well tolerated.

  • If UDCA is working for you, you should be able to reduce, if not stop, some or all of your PD medications. This should be done under the supervision of your Neuro. You may have to increase your UDCA dosage if some symptoms return. I had to double mine.

So, there you have it. As of this writing, I'm only taking 1200mg of UDCA for my PD and I'm 95%+ symptom free (again). I no longer dread a dismal future due to the long term debilitating side effects of Sinemet (L-dopa) and PD.  I hope it lasts. As always, I'll keep you posted on my progress.

 

Fred

Edited by MrFritz

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AN IMPORTANT LESSON REMINDER

 

I will elaborate in a subsequent post. But for now, this is for all who are trying or intend to try Ursodiol

 

  • Try to find the right starting dose. Don't assume that what works for one will work for all. It doesn't.
  • Do not exceed the "standard" maximum dosage of 15mg per kg of body weight without your doctors guidance.
  • Spread out your dose over the course of the day. Not all at once. Take it as three to four doses per day.
  • If you want to try to reduce or stop your PD meds: Do it very very slowly. Preferably with your doctor.
  • Ceasing all of your PD meds is a lofty but sometimes unattainable goal.
  • Reducing your PD meds is feasible.

P.S.:

I'm still doing well on 1200mg of Ursodiol per day without any other PD medications. An update about me and two others to follow soon.

 

Fred

Edited by MrFritz

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As a scientist I can say that more often then not breakthroughs in any scientific field are quite often by accident and often not by researchers themselves. Most require years if not decades of small steps punctuated at times by huge eye opening revelations- often related to something else than what we were looking for. Very few treatments/cures or approaches come without some sort of price- calculated or not. And there are alway humans in the mix who willingly put themselves at risk to help develop and test the medicines we benefit from. In a way we- PWP's- all have nothing to lose by trying but everything to lose by waiting for someone else to figure it out.  Like Fred I want to be part if finding  something that works- I find it to be a better use of my time than hiding from side effects or possible negative consequences.  My mom took a drug when she was pregnant with me to prevent her from miscarrying- it saved both our lives but I paid a price as it causes immune systems problems no one in the FDA thought of at the time. It was an acceptable trade in my opinion as I am here 47 years later. All drugs, natural or fabricated, FDA sanctioned or not- have risks and side effects and they vary from person to person. In the end my mom died  some 39 years later as a result of a blood clotting disorder complicated by an FDA approved drug, prescribed by a doctor who failed to pay attention to her family medical history- it was one of the drugs she should never have been on. Goes to show that even  clinically tested drugs can be deadly  given under the wrong circumstances. An aspirin could have saved her life.  Conversely, even the most innocent looking remedies or treatments can have serious side effects for some. For most of you bandaids are safe- for me they are dangerous as my immune system reacts harshly to the adhesive causing my skin grows into them in a matter of hours- but I am guessing that will not stop the rest of you from using band aids.   Until pharmaceutical companies put more time into PD drugs and less time into ED drugs- till then, like Fred and with the same caveats he readily provides, I am willing to explore other options. Thanks for sharing Fred and for having such an open mind, I hope the medication continues to work for you. Like New Normal pointed out- we still do not know what causes PD so in reality Fred's approach is really no more a shot in the dark than anything else.     Remember- when everyone thinks the same- its usually because no one is thinking at all.  Just my  2 cents.   

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Such a pity that Christie signed off this thread.  Her insightful comments would be interesting in response to Annikin's wisdom.  I hope she'll reconsider.

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Thank you Annikin and Roger. That was very nicely said. As for Christie, I have a sneaky suspicion that she's still with us.

 

Fred

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Well, folks....I have an appt with a new neuro on April 30 during which I plan to discuss Ursodiol. As u recall my current neuro wd not prescribe it.

 

Anniken: I really appreciate your comments...direct, succinct, provoking, and well founded. Thank you for contributing to this discussion.

 

Fred: as I get closer, I will privately email you to receive current documentation I can take to my appt.

 

PWP can also be an acronym for People With Purpose...you folks are definitely PWP....keep on keepin' on!

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For New normal and anyone else reading this. All of the info you need for you Neuro appointment is within this blog. But I would be more than happy to reply to you in detail personally via phone or email. I won't publish my phone number here but you can email me at mrfritz@comcast.net.

 

While I'm here, I want everyone to know something about Discipulus.

 

Discipulus said that he had been taking 300mg of UDCA for 6 months. So, we could count him and say that we have 3 successes and 1 failure. That's a great average. Better than most clinical trials. But, I will not count his input and I claim a 3 out of 3 success rate to date.

Why you ask? Two reasons:

 

1) His dose was 300mg when I have always touted 600mg. 500mg is the lowest amount that has shown any effect on one individual.

 

2) He state on April 4th that he tried this for 6 months. That puts him back to October 4, 2013. That's 2 months before I started this thread on Dec 4, 2013 at 8:16PM. Just look at the title of this thread on the top left of this page.

 

Good try Discipulus. But, I don't buy it. What I can't understand is why you would lie about something as important as this. Are you jealous or what?

In Latin, Discipulus means Student. Maybe you should change your handle to Fatuus. You can look it up if you know how to read.

 

Fred
 

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Fred,

 

More like 50/50. If you read Discipulus, they are taking 300mg twice a day.  I say only 50/50, because your other 2 supposed successes are anonymous and will not stand up in front of everyone and have their selves count.  Nice try Fred, but you can't make the stats say what you want them to say.  Truth hurts doesn't it.

 

 

Dear Fred,

I think you're glad to know that I am taking 300 mg of ursodeoxycholic acid 2 times a day for 6 months without miraculous healing of PD.
However I think I can say that it is not worse.
I had no side effects.

Discipulus

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Also, it's highly likely that Discipulus is taking Ursodiol for some other disease (liver disease)-and not for his PD !!!! That's probably why he started Ursodiol prior to the opening of this thread !!!

 

Ursodiol is a liver drug, mainly used for treatment of gallstones and primary biliary cirrhosis. There are no clinical data -none whatsoever-suggesting that Ursodiol may have any symptomatic effect in PD. Other than this forum thread !!

 

I won't comment on Fred's latest post. It speaks on its own.

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To Allen - Thank you for correcting my error re Discipulus' dosage post. In that, I was very wrong and freely admit it.

 

To Discipulus - Please accept my sincere apology for my last post. I would also appreciate knowing if Christie was right. Why were you taking UDCA? And if it was for gallstones, why at half of the "standard" recommended dosage?

 

To Rodger - I told you so.

 

To Christie:

Yes. everyone already knows it is a liver drug. Even I said that. So why repeat it. Think of something new to say. Did you know: 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 taurochenodeoxycholic acid [TUDCA], ursodeoxycholic acid [uDCA], and chenodeoxycholic acid. However, UDCA and TUDCA were first synthetically developed in 1954 in Japan. Extracted from: http://en.wikipedia.org/wiki/Tauroursodeoxycholic_acid. Also, try reading "Tauroursodeoxycholic acid prevents MPTP-induced dopaminergic cell death in a mouse model of Parkinson's disease." which can be found at: http://www.ncbi.nlm.nih.gov/pubmed/22773138

 

As for my deep seated lie regarding the fabrication of other phantom PD patients trying my regimen, I think you will be hearing from one of them very shortly. As for the other patient(s), it up to them to decide to come out into the sun. Would you?

 

For any other skeptics out there:

You're welcome to see me in person. I live in central New Jersey, not far from the Jersey Shore. Just email me to set a date. Afterwards, kindly tell the world what you saw. Oh, I forgot. You will probably say that you saw an old, fat, balding man with a slight tremor in his right hand who lies about having PD and not taking any PD meds.

 

Elvis has left the building.

 

Fred

Edited by MrFritz
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Fred, I've spent half my life studying and practicing medicine. Thanks for the advice, but I don't need any lecture on what and how to read.

 

It truly annoys me to see you turn speculations into solid medical evidence, advice patients on drug regimens and dosages, compare your personal opinion/experience to the results of clinical trials, just to mention  a few...

 

I have nothing against alternative treatments, experimentation etc. I've often questioned standard medical practices and treatments myself, and I will be the first to applaud and congratulate anyone who will report reproducible  and  reliable evidence-even anecdotal evidence- on new PD treatments, along with physician's documentation.

 

but  what you are doing for months in this thread is far from that. you've crossed every line there is, and these lines exist for a reason.

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Christie:

 

You are the sole contrarian. Other than your own self-righteous rants, you offer nothing to this conversation. You cite no paper, study or article that supports anything that you have said or is contrary to anything that I have said.

 

What kind of medical practitioner are you? Are you a Vet? We all know many MDs and PhDs whom we flock to. Then there are those that we wouldn't trust to take out the garbage and find their way home. IMHO you are in the latter.

 

You rant on and say:

"I have nothing against alternative treatments, experimentation etc. I've often questioned standard medical practices and treatments myself, and I will be the first to applaud and congratulate anyone who will report reproducible  and  reliable evidence-even anecdotal evidence- on new PD treatments, along with physician's documentation."

So there you have it. If you're not a physician you have no right to self experiment and, G_d forbid, voice your findings and encourage other doomed PD patients to save themselves. I am obviously a boon to researchers like Professor Oliver Bandmann MD, PhD (read his profile at the Michael J. Foxx Foundation: https://www.michaeljfox.org/foundation/researchers.php?id=427) but a threat to the "real" medical community that you claim to belong to. Who are you?

 

I'm trying to help people and I have nothing to gain by doing this. What is your motivation and qualifications? Verifiable facts. Not words.

 

We've asked you contribute in a positive manner or go away. In addition to your hearing deficiency, do you also suffer from an OCD?

 

I'm finished. Whose turn is it now?

 

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Did I miss something here?  Discipulus has been taking it for 6 months and maybe it's for a liver problem but he stated it hasn't helped his PD so I'm under the assumption that he took it for PD.  Am I wrong? I wish everyone would just be nice and comment respectfully.   There is a lot to be learned here but it's hard to keep reading when there is so much hostility brewing. 

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