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MrFritz

URSODIOL - A Potential New Drug for PD

1,144 posts in this topic

Hi Miracleseeker,

 

Sorry if I came on a little strong. I took no offence and did not intend to offend you or anyone else. I wish I could share some emails with you. But the party involved wishes to remain anonymous for the time being. If you read them, I think you would understand why I'm spending my time promoting this. Suffice it to say that my sole goal is to help others while I am helping myself. And I am confident that many people in this group would be helped by this if given a chance.

 

I do agree with you that it may not help everyone and (for most of us) you do need a prescription and many doctors won't write one for an off-label drug. While composing this, I read New Normal's post. I think he said it all very well. We are all here trying to 1) get answers for ourselves and loved ones and 2) trying to help others that are in the same boat.

 

If you check the main forum listing index page, you will find that this is probably one of the most active threads. It's true that there are only a few of us posting. But there are a significant number of people that are reading our posts, presumably with great interest. Going forward, I'm only posting about changes in my condition due to my use of Ursodiol or in reply to other posters.

 

Peace to all,

Fred

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Sorry you have to compete with coconut oil on your posting but oh well.  Yes it may be wise to stick with your progress on this and leave it at that. 

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Miracle seeker:

 

Good for you...I think the best part of yr name is "seeker" It is an action word...not just "to seek" but "seeker" ... A person who is continuously making the effort to find...yep...good for you! If we do not seek, we are sure not to find!

 

Let me clarify a point abt the oil....the reason I posted on Fred's thread alongside his comments re: the liver rx is I saw a connection that may otherwise go unnoticed among clinical trials.....this may take some time...bare with me. As I hv sd I am new to all this...in the initial research I see there is no specific known cause for PD...might be physical damage to the brain..I.e. Boxing ; may be familial. For decades my symptoms have had "the six degrees " of separation from the GI tract...bizarre symptoms sd to be MS etc. Consistent high liver enzymes...bile etc...gross stuff ..but highly atypical...tremors originally detected by GI specialist who referred me to MS specialist after thorough diagnostic work up. GI symptoms increase proportionately to tremor increase...atypical for anything....

 

SOOOOO, when the oil worked for me I learn that it may be that the chemical make up of the coconut oil is unlike any other oil....it is NOT as high in calories as is suggested as it actually LOWERS bad cholesterol...increases good cholesterol . As I understand it, the coconut allows the nutrients for cell growth to transfer the brain blood barrier. Some claim there can be reversal,of cell death...hence,the example of,the doctor's husband rebounding from Altzheimer's .

 

Therefore, IF...IF...IF the cause of a person's PD is from a malabsorption of oils......then.....the introduction of coconut oil may be SPECIFIC to their symptom relief. The operative words here are..."IF"" ..... NOW.... What I saw in Fred's post...a LIVER rx....wow, a LIVER rx...how absolutely weird is that! Sure as heck a lot further than 6 degrees of separation from PD!!

 

Yet, my family tree is filled with liver, gall bladder, G I , cholesterol, AND Altzheimer's , dimentia, mental illness........wow....now is it just ME???? Of is there some kind of connection here...if absorption or malabsorption of oils is impacted by either a liver rx or an intro of an atypically formulated natural oil...and the result is an improvement in symptoms THEN can we at least open our minds to the possibility there is SOME CONNECTION......except, we all have to keep in mind this is pertinent ONLY to those people who JUST might have the causation be a lack of oil absorption across the brain barrier.

 

 

WHEW!!!! Are you with me? Am I off the planet???? Is it worth noting, given the hundreds of anecdotal stories and undisciplined studies that confirm the success of coconut oil on chronic neuro disease patterns, that this is of value to discuss?

 

Is it for everyone...NO. wd I advise everyone to take it?....No. Do I feel it is the answer and cure for PD? No. Is it worth discussing...why, HELL YES! Because for some reason, this HAPPENS to work for me...and apparently Karen...I want everyone to know about it. The interesting thing.... Have had yellow bile diarrhea for decades..now that we are friends, and I know you will keep my secrets....voila , with cocoanut oil, normal bowel stools for the first time....you add that to less tremors, better cognition, it works,for me!

 

Now, miracle seeker,....I don't see where it is benefitting your mom that much...and all the anecdote seems to say it works quickly...so my counsel to you, is to continue to seek...something in yr gut...and in my case, literally,.... told me to use cocanut oil....serendipity ??? Or miracle???? I believe miracle......and because of that, I posted....for I hope to help with the divine intervention that brought the news to me,

 

And as comrades in arms, may we be blessed to support each other in seeking our own personal miracles...

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BTW, Fred, I am DEFINITELY asking my neuro re: Ursodiol. Still don't know if I was able to convey my opinion of the connection between Ursodiol and the oil...I hope you see from where I am coming. ...I did not mean to rob yr thread.......I think yr info has bn a god send to me...literally...and am taking yr suggestion and running straight to my nxt neuro appt ...April 1. Thanks, Buddy....PS while I hate to disclose this after revealing my GI SYMPTOMS across the forum, but I am female, grandmother of 17, love to laugh....former Harley rider...not of the male gender...:) glad to make your acquaintance ! :)

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To both of you guys (gals or whatever - you've gota love em :-P):

 

I never considered the coconut oil posts as a thread hijacking. If anything, I found it made this a more interesting and diverse thread whose underlying theme (if you think about it) is self-help. Because we all know that Sinemet is the only prescribed primary treatment. And we also know that we need ever increasing quantities of the stuff and get an ever decreasing benefit from it.

 

For those who have tried it and got benefit from it, Ursodiol or Coconut Oil seems to significantly reduce the symptoms of "our" PD. Now, we are also finding out that it reduces (if not eliminates) our need for Sinemet. A double blessing.

 

If the Coconut Oil didn't work for you, then just maybe, the Ursodiol will. If not those, there is the new study in process about the Nicotine Patch. As I said in an early post, if we can't cure it, then we can at least try to slow if not stop PD's progression because we all know and fear what the end result is.

 

For those who want to try the Coconut Oil, make sure you buy the one labeled "RAW." For those wanting to know where I buy my Ursodiol (or any other questions about it), send a private email to mrfritz@comcast.net and put PD Forum in the subject line.

 

BTW - I also suffer from PD related Nocturia for which I take 1mg of Clonazepam every night. Not only have I reduced my Sinemet from 6 tablets down to 4 tablets, but I have also cut my Clonazepam in half. I did this 4 days ago and I'm still doing fine. In fact, I'm feeling better (less tired) with fewer drugs in my system. I can't wait until next Friday when I will try to reduce them both again.

 

One final note to Christie who said earlier today "This thread should be locked by the administrators" without ever mentioning why.

Well, I don't know and I don't really want to know what your problem is. For people like you, there is a little red box at the top right of this page marked "Unfollow this topic." Simply click that button and this thread will cease bothering you.

 

Regards & stay well,

Fred

 

3/27/2014 - Corrected email address. If you tried to send me an e-mail, please resend. Thank you.

Edited by MrFritz
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Hi Miracleseeker,

 

Thankfully, I did not. But the anonymous person that I previously mentioned who just started Ursodiol may have had some rigidity. I say that because in the first email I was told "I have had PD for 3 year and tremors for 2 years. In the last e-mail in which I was told how fast and well it the Ursodiol worked, that person said "I used to experience difficulty putting on clothes; now I can put them on quickly."

 

Forgive me for assuming, but are we talking about your Mom? Can I help you in any other way?

 

I was not planning on posting this evening because I'm still assessing the impact of reducing my Sinemet by 33% (from 6 tablets down to 4 tablets of 25/100 mg  Sinemet). I have been on this reduced level for 1 week now. I have become super aware of every tic in my body. And I think, that because of this super awareness, I have had a tremor or two. But nothing frequent. Is it psychological or a physical manifestation? I don't know yet. Tomorrow morning is when I was going to reduce my Sinemet again. If I do, I will reduce it to 3 tablets and see what transpires. Tonight I am reducing my Clonazepam to 0.25mg. I'll post again and let you know how it working out for me.

 

Regards,

Fred

 

P.S. - Just a note about my choice of words when I speak of this anonymous person. I am carefully wording my statements to mask all information, including gender.

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I'm very sorry to hear that. Obviously, her condition is different from mine or the one other person that I know who is taking Ursodiol. So, even though I am promoting Ursodiol due to our success, I don't know if it would benefit her.

 

Yes, I know that we have bantered this subject back and forth. So there is no need for us to reiterate the issues. However, I am still of the opinion that: 1) There are probably no side effects at this low dosage level (600mg/day); 2) There is no interaction between Ursodiol and any PD drugs; and, lastly, 3) You have nothing to lose. You should know if it's helping within a few days. If it doesn't help, chuck it and send me a nasty ( :-P ) and if it does, please tell the world.

 

BTW - I bit the bullet again. Last night I cut my Clonazepam to 1/4mg (originally 1mg) and this morning I cut my Sinemet to 2 tablets per day (originally 6 tablets). So far, so good. I did get a few minor isolated tremors here and there. But, I think (hope) that this will pass as my body adjusts. I'll keep you posted.

 

Good luck,

Fred

Edited by MrFritz

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Re: Rigidity for Miracleseeker:

 

I just confirmed that the other person I referred to did have rigidity and tremors. The issue still exists but both were helped by taking Ursodiol. This person is taking other meds but nothing containing L-dopa (Sinemet) in the belief that, over time, Sinemet will make the rigidity worse. This belief is based on a 2006 article entitled "Levodopa, motor fluctuations and dyskinesia in Parkinson's disease" which can be found at PubMed.gov (US National Library of Medicine - National Institutes of Health). It was an interesting read. Here is the link:

 

http://www.ncbi.nlm.nih.gov/pubmed/16925499

 

BTW - 2nd day and still doing well on a 66% reduction of my Sinemet dosage. Although I'm not tremor free (never claimed to be more than 95%), I'm only experiencing a slight increase which is very livable. The jury is still out as to whether or not I can get off of Sinemet completely. I'll go as far as I can and then speak with my Neuro. Maybe I need to increase my Ursodiol dosage but I don't want to do that on my own. I'll discuss it with my Neuro at our next appointment.

 

Fred

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Sharing an email update from Anonymous who recently tried Ursodiol for his PD.

 

He was diagnosed 3 years ago and has had tremors for 2 years. He also has rigidity.
He has always refused to take Sinemet but was taking the following meds:
1.Inderal 10mg /2
2. Mirapex pr ta 0.75mg /1
3.Elegyl 5mg/1
4. PK-merz 100mg/1

 

 

Dear Fred,
 
 Yes, after taking Ursolic (Ursodeoxycholic acid),  made in TW for alomost a week, I changed to Urso (Ursodeoxycholic acid), made in Japan, (which I bought in a pharmacy without a prescriptioon on a Taipei street) last night for good, until some day I have access to the brand you have been taking. I am taking Urso 600 mgs per day after three meals. I  noticed the following changes:
 1. Body flexibility: I can turn and twist and get  up almost normally.
 2. Limb flexibility: I eassily put on my tight polo T-shirt and tight blazer. I used to worry about having to  wear clothes designed for PD patients!!!!
 3. Mobilty: I used to have to take a taxi to school when it rains (because due to tremors I couldn't carry an umbrella and due to rigidity I couldn't put on a blazer easily); but this morning, wearing my water proof blazer, I walked for 5 mins to the bus stop and 3 mins from the school stop to school without taking any short rest.
 4. Clarity  of mind: I remember the dates of all meetings without relying on anything written. I became more aware of what to do in class and after class.
 5. Light body: I used to drag on with a hevy body but not any more.
 6. Better table manners: For example, when I had dinner  in  my favorite Japanese restaurant last night, I was able to get the soup in the counter without spilting and ate the fish with chopstics neatly without dropping food outside the serving tray or floor, which often used to be the case.
 7. Taking out and putting back the changes easily. I used to keep small amouts of money in my shirt pocket and keep the changes there after purchasing,  now I can use my wallet.
 
 I have stopped taking all the  other PD medicines but I keep  it with me for emergency.
 
 Despite the improvements above, I still need to exercise daily to reduce tremers, which come and go but have deminished noticeably.

 

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Well, Fred, I am disappointed. My neuro wd not prescribe the Ursodiol. My tremors r bad enough that I am to take the carbodopa/levodopa 50/200 4 x per day. If I do not see an improvement in a week, I am to start Azel...(sp)

 

He sd unless it is proven by clinical study, he will not prescribe. Anecdotal evidence is not sufficient. I took him the info you hd provided by link.

 

Sigh.....

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Hi New normal,

 

I am really dismayed to hear that, but not at all surprised. If you send me a private email ( mrfritz@comcast.net ) I could give you the info on my 2 Neuros (civilian and VA) so your Neuro could consult with them. But, alas, we all know that he probably won't even consider doing that. So, what to do besides changing Neuros or buying it from a pet supply house (available but only joking). Here are some other options you may want to consider:

  1. Get your prescription from any other doctor (Internist, GP, Dermatologist).
  2. As a last resort, it is available from Canadian as well as Israeli mail order pharmacies. Hopefully what you buy will be manufactured in the US or in Israel by Teva.

Your Neuro is putting you on Carbidopa/Levodopa (Sinemet) 50/200 4 x per day and then wants to add Azilect? That's a significant dose. As for Azilect, it is my opinion (and that of may others here) that it will do nothing for you other than quickly emptying your wallet or driving you into the donut hole if your on Medicare.

 

I wasn't going to update you yet. But I'm now down from 6 to 2 Carbidopa/Levodopa (Sinemet) 25/100 + 1mg of Azilect. I had scheduled myself to stop the Sinemet & Azilect completely on Friday but may do it today. to date, I have experienced only a slight increase in my right hand tremor and nothing else.

 

If I can help you in any other way, just ask.

 

Fred

 

 

 

 

 

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Fred,

 

Medications should be taken under the guidance of their doctor.  To suggest someone go behind their doctors wishes is wrong.  The patient will risk being discharged by their doctor.  Are you willing to accept that kind of responsibility?  From my point of view, it appears that you are trying to sell this stuff to other members.

 

Dave

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Fred,

 

Medications should be taken under the guidance of their doctor.  To suggest someone go behind their doctors wishes is wrong.  The patient will risk being discharged by their doctor.  Are you willing to accept that kind of responsibility?  From my point of view, it appears that you are trying to sell this stuff to other members.

 

Dave

 

My thoughts exactly...

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Okay Dave. I do have to agree 100% with your statement that "Medications should be taken under the guidance of their doctor".

 

FYI: Today I stopped ALL of my PD meds. Monday night I took my last Clonazepam. My last 1mg Azilect was yesterday morning and my last 25/100 Sinemet was yesterday afternoon. Other than the 600mg of Ursodiol per day and my BP meds, I am 100% drug free now. Mentally and physically, I am feeling better than I have in a long time albeit with a slight right hand tremor at the moment. Late yesterday afternoon, I took my first walk since last summer. I went 1/2 mile and didn't even feel tired. For an overweight couch potato like me, that's a major milestone even without PD. If it wasn't raining today, I'd do it again.

 

I was lucky to have a doctor that could see the down side of trying this and, seeing none, prescribed it for me to try. Now, both he and my other Neuro are believers. You're welcome to express your opinion here. But you're not welcome to accuse me of having a financial interest in selling an 11 year old generic drug that is well studied and FDA approved but not for PD only because nobody ever thought of it for that usage and subsequently did a clinical study.

 

You can be proactive or you can continue doing what your doctor is currently prescribing for you. Hopefully you won't eventually turn into a brick. This is a "treatment" that has worked for me and is working for the one other person that I know of who has tried it. PD is a progressive disease. Your condition will only worsen over time. Do you know of anyone other than me who claims to have lessened his symptoms or halted/slowed its progress? I never claimed that I'm cured for I am not. I assume that I will need to increase my Ursodiol and/or start taking Sinemet some time in the future. Who knows? But even if I have to start taking Sinemet again, I believe that I'm significantly ahead of the game by needing less medication at a later date.

 

Fred

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Just adding some fodder to the Ursodiol fire: THE REAL FACTS ABOUT URSODIOL

 

If you read the below, you can see that Ursodiol has been in use since 1980 (34 years). It has undergone clinical trials for Liver Disease as well as other neurological disorders but not for PD because nobody thought of it previously. As per Dr. Oliver Bandmann, he is awaiting funding in order to start a clinical trial for PD. Ursodiol's safety, side effects and drug interactions are well documented.

 

After I read all of the below, I made my decision to take Ursodiol. For the benefit of my peers, I posted my results. One other person to date has benefited from this knowledge. A few of you have nicely told me I should have kept my mouth shut. In hind site, maybe I should have. Anyway, I have empowered you to be proactive in the treatment of your disease. What you do from this point forward is up to you.

 

* * *  URSODIOL FACTS  * * *

 

There are no known drug interactions between Ursodiol and any PD medications. Many people using this medication do not have serious side effects which include: stomach upset, nausea, diarrhea, dizziness, back pain, hair loss, or cough. See http://www.medicinenet.com/ursodiol-oral/article.htm

 

From my previously cited article from "Brain": Ursocholanic acid rescues mitochondrial function
in common forms of familial Parkinson’s disease ( http://brain.oxfordjournals.org/content/early/2013/09/02/brain.awt224.full.pdf ).

 Ursodeoxycholic acid has been licensed for the treatment of
 patients with primary biliary cirrhosis since 1980. It is typically
 used at a dose of 10 mg/kg of body weight per day in patients
 with primary biliary cirrhosis but *Parry et al. (2010) also reported
 ‘excellent’ safety and tolerability of ursodeoxycholic acid in
 patients with motor neuron disease at 15 mg, 30mg and 50 mg/
 kg per day.

  *Parry GJ, Rodrigues CM, Aranha MM, Hilbert SJ, Davey C, Kelkar P,
  et al. Safety, tolerability, and cerebrospinal fluid penetration of ursodeoxycholic
  acid in patients with amyotrophic lateral sclerosis. ClinIcal
  Neuropharmacol 2010; 33: 17–21.

 

Citing from Parry's CLINICAL STUDY entitled Safety, tolerability, and cerebrospinal fluid penetration of ursodeoxycholic  acid in patients with amyotrophic lateral sclerosis ( http://www.rattlebrain.com/~alsurso/Safety%20Tolerability%20Ursodeoxycholic%20Acid%202010.pdf )

 

 Objective:
 Amyotrophic lateral sclerosis is a progressive degenerative
 disease, which typically leads to death in 3 to 5 years. Neuronal cell
 death offers a potential target for therapeutic intervention. Ursodeoxycholic
 acid is a cytoprotective, endogenous bile acid that has been shown
 to be neuroprotective in experimental Huntington and Alzheimer diseases,
 retinal degeneration, and ischemic and hemorrhagic stroke. The
 objective of this research was to study the safety and the tolerability of
 ursodeoxycholic acid in amyotrophic lateral sclerosis and document
 effective and dose-dependent cerebrospinal fluid penetration.
 
 Results:
 Our data indicated that ursodeoxycholic acid is well tolerated
 by all subjects at all doses. We also showed that ursodeoxycholic acid is
 well absorbed after oral administration and crosses the blood-brain barrier
 in a dose-dependent manner.
 
 Conclusions:
 These results show excellent safety and tolerability of
 ursodeoxycholic acid. The drug penetrates the cerebrospinal fluid in
 a dose-dependent manner. A large, placebo-controlled clinical trial is
 needed to assess the efficacy of ursodeoxycholic acid in treating amyotrophic
 lateral sclerosis.

Edited by MrFritz

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Hi Fred,

 

Good for you.  I know you mean well and that you want everyone to gain the positive effects you've received from this drug.  Unfortunately until it's widely discovered to be useful for PD I don't think you will have too many believers.   I'm too chicken to try this on my mom and I know her doctor will say no and I really do not want to experiment on her even though I know you are so sure it works.  Just be patient and maybe in a few years you can say "I TOLD YOU SO"    Stay well. :-P

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Thank you miracleseeker. I do hope a miracle comes your way. Stay well and regards to your Mom.

 

Fred

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One final note and i'm out of this thread.

 

I hope everyone realizes that the opinions expressed in this forum by each one of us are not read  by forum members only, but also by  an unknown  number of "silent" visitors. Teenagers, patients with no access to specialized doctors/neurologists or even to primary care physicians, patients living in underdeveloped countries may be among them. What seems like an innocent conversation, debate, argument-call it as you like-between me, you, Mr Fritz, whoever, may have an unpredictable effect on other people's lives. Unfortunately, people tend to believe whatever they see written. One more reason to think twice before hitting the "post" button.

 

Miracleseeker, if you are not willing to experiment on your mom, why do you encourage Mr Fritz? so that others may experiment on themselves? just a thought.

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To Christie: Hi and (finally) goodbye. You contributed NOTHING to this discussion.

 

For the rest of the community:

 

I just has an email from a very nice lady in AU. She wanted Urso (same as Ursodiol) but her Neuro wouldn't prescribe it. So she got it from her GP. She elected to take 1,000mg/day and reports significant relief. She also asked me if I knew anything about TUDCA. I did not. So I looked it up and found Tauroursodeoxycholic Acid (TUDCA) and a clinical study albeit on mice with PD. As you can see from it's name, TUDCA and Ursodiol are cousins. I could not find the full study. But here is the abstract:  http://www.ncbi.nlm.nih.gov/pubmed/22773138

Does anybody here still think I'm blowing smoke?

 

Fred

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You have my support and admiration Fred.  Thank you for generously sharing your discovery with the rest of us.  And for doing so in a most collegial and patient manner to the Luddites around here.  Both of them.

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