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MrFritz

URSODIOL - A Potential New Drug for PD

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I was diagnosed with PD over a year ago. I had been taking Azelect plus 4 tablets of Sinemet daily. This regimen provided some relief but it did not relieve my tremors which were significant and worsening especially in my predominate right hand. In September, I came across an article entitled Ursocholanic acid rescues mitochondrial function in common forms of familial Parkinson’s disease which was published on September 2, 2013 in Brain.

(See: http://brain.oxfordjournals.org/content/early/2013/09/02/brain.awt224.full.pdf)

 

When I saw my Neurologist on September 25, he told me that he was not familiar with this article. He did recommend that I increase my Sinemet dosage to 6 tablets per day to reduce my tremors. Later that same day, his office called me. He read the article and was willing to issue me a prescription for 300mg of Ursodiol to be taken twice per day. From September 25th through October 16th, I was taking the increased dosage of Sinemet. But, it did not seem to reduce my tremors. On October 16th, I started taking Ursodiol. On October 17th, my tremors were almost gone. As of this date, I am still almost tremor free due to the effects of Ursodiol. I saw my Neurologist today and he was pleasantly surprised with the results.

 

I thought I would like to share this information with the group. Although Ursodiol may not work for everyone, I thought some of you may wish to give it a try or at least discuss this with your doctor. Please note however that Ursodiol does have side effects. Fortunately for me, I have not experienced any.

 

Please feel free to contact me if you have any questions regarding this post.

 

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I have many questions regarding this post....Beginning with:  "too good to be true"? 

 

A neurologist approving off-label use of a drug based on a single article (indicated by the patient himself....)? An article which is not  a clinical study, not even a clinical trial? ?

 

NOTE: Although Ursodiol is a licenced drug for treatment of liver disease (typically prescribed to dissolve cholesterol gallstones and to treat primary biliary cirrhosis) its  safety and tolerability in patients with PD have not been tested yet. It might be a promising drug for PD. But this remains to be seen.

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Hi Christie,

 

I can not disagree with anything that you have said because it is all true. Be that as it may, it was my personal decision to be my own guinea pig. And that's a decision that I am grateful for having made. As for Ursodiol being "off-label," it isn't the first and it will most likely not be the last drug found to be of benefit for other uses.

 

I have a neighbor with severe PD. He just had electrodes implanted. I saw my condition worsening and felt it (electrodes) is not something that I would want to live with. So, I was willing to try anything reasonable that may prevent or even delay that day.

 

I'm just passing on my experience. What one does with it is up to them. I am of the opinion that there is little if any downside to trying Ursodiol. If it doesn't work for you, what did you lose? But, that's a decision to be made between the patient and his/her doctor.

 

As for "too good to be true?", you're welcome to come and visit me and see for yourself. I can now sign (rather than scribble) my name, use my computer mouse and hold a telephone. All with my predominate right hand. These are things that I had great difficulty doing before I tried Ursodiol.

 

Fred

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Hi Christie,

 

I can not disagree with anything that you have said because it is all true. Be that as it may, it was my personal decision to be my own guinea pig. And that's a decision that I am grateful for having made. As for Ursodiol being "off-label," it isn't the first and it will most likely not be the last drug found to be of benefit for other uses.

 

 

 

Fred, this was not your personal decision. The drug was prescribed by a doctor, not you, and doctors don't like to experiment on their patients. no, correction, they simply don't do that, they don't use their patients as guinea pigs. Treatment decisions are always evidence-based. And they should be.

As I said,  it remains to be seen  if Ursodiol is of benefit or not for routine clinical use in PD.

 

One last question: There are a lot of promising drugs for PD. Why did you choose Ursodiol? As you said, you wanted to try an alternative to Sinemet for your tremor. However, there is no data suggesting that Ursodiol can have an anti-tremor effect. And the study cited suggests that Ursodiol may have neuroprotective properties, not direct symptomatic effect. After all, it has not been tested on patients with PD!!!

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Hi Christie,

 

Let me correct you on a couple of points:

 

1)  It was I, not my doctor, who found the aforementioned article and it was I who requested my doctor to prescribe it. He did so after first reading the article. My son-in-law is also a doctor in another unrelated field. I had him read the article and he too thought I should try this. I have a 2nd neurologist at the VA who knows Dr. Oliver Bandmann and speaks very highly of him. This VA doctor would not prescribe Ursodiol because it was off-label. However, since advising him of the results of my self-inflicted trial, I am now getting my Ursodiol from the VA Pharmacy. So, to correct you, it was my own personal idea and decision to be a guinea pig. :-P

 

2)  I selected Ursodiol (ursodeoxycholic acid) because that was the drug mentioned in the article as having the most beneficial effect. Please see: http://www.sciencedaily.com/releases/2013/09/130903123524.htm  I have been taking Ursodiol since 10/16/13. It had an almost immediate effect at reducing my tremors and, to date, it is still just as effective. This was not like testing out a new drug. Ursodiol is an old drug whose negative side effects are well know.

 

3)  It's important to note that I have not stopped or reduced any of my other drugs (Azelect & Sinemet). I'm taking Ursodiol as an additional medication. My neurologist advised against trying to reduce or stop these other medications.

 

4)  The dosage that I am taking (300 mg twice a day - After breakfast and after dinner) was arbitrarily chosen by my neurologist to be a good starting point.

 

Fred

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2)  I selected Ursodiol (ursodeoxycholic acid) because that was the drug mentioned in the article as having the most beneficial effect. Please see: http://www.sciencedaily.com/releases/2013/09/130903123524.htm

 

1)This was a drug trial performed in the lab using skin cells from people with PD! Not a clinical trial. There is no evidence yet that this drug may have ANY symptomatic effect on PD.

2)(Most if not all?) doctors don't prescribe drugs at their patients' requests.

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2)(Most if not all?) doctors don't prescribe drugs at their patients' requests.

And Mr Fritz was lucky enough to find one that would....and the new medication has worked...and he has been kind enough to alert readers of this list of his good fortrune.  Might we all pause for just a moment  Christie, and be thankful and appreciative for his report.? 

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I turn to this forum as an informative opportunity for all and SUPPORT.

 

Of late there seems to be some negative comments to one another.

 

While they may be wise opinions, let's please keep an open mind and keep the negative comments aside.

If one doesn't believe, that's fine. To each her/his own.

 

Who knows, a miracle could happen and if it benefits one or all, that's great!

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I've been away all day and just returned to read these posts. We all have a very debilitating and progressive disease. Anything that can slow its progress and/or reduce its symptoms is, in my opinion, a godsend. My sole intent in posting was to inform the group of my experience. Each and every member of the group is free to do with this information as they see fit.

 

If you believe it doesn't work and/or it may harm you, please don't try it. If, on the other hand you believe that there is a chance that it may help you and won't cause you harm (even if it doesn't work), then why not give it a shot. Anyway, I will reply to further posts regarding my experience but I will not argue the merits of the study. I'm just happy to be 95% symptom free.

 

Wishing you all the best,

Fred

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Fred,

 

Since the Ursodiol appears to be responsible for the relief of your symptoms, do you plan on reducing and/or eliminating your Sinemet and Azelect?  If you do, I would be very interested to see if the Ursodiol eliminates your symptoms without the other drugs.

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A most interesting question. When I saw my neurologist the other day, that was one of my first questions, His answer, with which I agree, was not to change anything. If it's working, leave it alone. Ergo, I am still taking my Azelect and Sinemet as previously prescribed.

 

To be very honest, I don't know the exact mechanism afoot here. I have been considering contacting the author of the study, Dr. Oliver Bandmann, to see what he thinks.

 

Fred

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I'm curious.  Did you get your DNA tested by 23andme because a quick look at their research indicates much of it is related to the LRRK2 mutation version of PD.  If you have the mutation, it might indicate why this is working for you as well.  In any case, I'd encourage you to contact the researchers, although I'm sure they'll tell you that they don't recommend it without further study.  Thanks for the info.

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FYI: I have not had any DNA testing. I have no immediate or even distant family members with PD. I attribute my PD to heavy exposure to TCE (Trichloroethylene) during my years in the U.S. Air Force. I'll discuss the DNA test with my neurologist during my next visit (6 months).

 

Fred

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If you do get any information from the researcher please post. Do anyone have any idea where this drig is in the pd pipeline?

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Ursodiol is not a new drug. It has been around for many years. The brand name is Urso. It is available from any pharmacy with a prescription. The Costco mail order pharmacy (if you're a member) has 100 capsules for $42.66.

 

To the best of my knowledge, Ursodiol is not in the PD pipeline yet.

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Hi Roger,

 

It's a great question. I'd like to know the answer myself but, I'm not willing to consider stopping my Ursodiol to see what happens. However, considering how quickly it reduced my tremors (less than 2 days), I think it would be safe to assume that they would return rather quickly. My neurologist advised me not to play with my meds. If it's working, let it be.

 

Fred

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1)This was a drug trial performed in the lab using skin cells from people with PD! Not a clinical trial. There is no evidence yet that this drug may have ANY symptomatic effect on PD.

2)(Most if not all?) doctors don't prescribe drugs at their patients' requests.

Quite the contrary, my Dr. has always been willing to prescribe medications at my request  for various things over the years. When I first started having nuerological problems about 15 years ago I asked for Amantidyne and she was more than willing for me to try it, There have been many other things over the years that I have asked for based on my own research online, that she has been willing for me to try, some helped some did not, though in truth I have had less success with those she perscribed me on her own with out me asking.

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My dear McCall,

 

First, you should have clarified that you don't have PD yourself. Treatment of a degenerative neurological condition like PD MUST be evidence-based.

 

Second,  Ursodiol is no amantadine. Your comparison was completely irrelevant. Amantadine has  broad pharmacological actions and can be prescribed for a variety of   clinical uses, including  treatment of several nervous system disorders. On the other hand, Ursodiol is a LIVER drug with very restricted indications. for which there is no clinical evidence that it may have the slightest symptomatic effect on PD.

 

Whoever can read through the lines will understand what i'm trying to say.

 

PS: A doctor may prescribe a treatment  at his patient's "request" only if this treatment is compatible with current evidence-based medical practice. For example, I have young onset PD, and my neurologist insisted I should begin treatment with Neupro. I "requested" a prescription of levodopa instead, because I hate DAs. My neurologist accepted my "request", because levodopa monotherapy is an acceptable treatment option in YOPD. if I had asked my  neurologist to prescribe me a drug which is not indicated for PD treatment, just to "give it a try", he would have surely refused.

Edited by christie

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Well, this discussion seems to be degenerating to some degree.

 

To reiterate: First, let me state that I do have PD and I was (and still am) taking Sinemet to help control my tremors. My tremors worsened so on September 25th my doctor increases my Sinemet from 4 tablets to 6 tablets which did not improve my tremors. On October 16th I added Ursodiol and on October 17th, my tremors were almost gone. Now, 2 months later, my condition has not changed and my neurologist wants to see me in 6 months instead of the usual 3 month interval. Remarkable isn't it.

 

So, to Christie and all the other readers: It's okay to be a pessimist. But don't deride this. Ursodiol may not help everyone. But if it helped me, I'm sure that it will help others if they try it. I hoping some other adventurous sole will try it and post their results here.

 

Fred

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Hi Roger,

 

It's a great question. I'd like to know the answer myself but, I'm not willing to consider stopping my Ursodiol to see what happens. However, considering how quickly it reduced my tremors (less than 2 days), I think it would be safe to assume that they would return rather quickly. My neurologist advised me not to play with my meds. If it's working, let it be.

 

Fred

 

yes, it is indeed...(a great question...)

 

Mr Fritz,

 

You are telling  us that your neurologist made this HUGE,  ground-breaking discovery of a new miraculous drug which can completely eliminate PD tremors within  a SINGLE DAY and didn't even care to confirm this by telling you to just skip one dose or two of Ursodiol? ? Just  in order to see if your tremors would reappear? But instead, he prescribed Ursodiol  for another 6 months?

 

Your response to this drug could have been a placebo response, or a coincidence, considering you had already increased your Sinemet dosage. And, as all patients with PD know from first hand experience, and as your neurologist knows too, it may take several days, weeks or even months before the full benefits of levodopa are seen.

 

Each member in this forum is free to believe whatever they want.

 

PS: I prefer to call myself a realist.

Edited by christie

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I don't believe that my increased Sinemet dosage from 4 tabs of 25/100mg to 6 tabs of 25/100mg would take 22 days to suddenly kick in and give me an almost complete cessation of my tremors.

I'm starting to feel abused by having posted my result for the possible benefit of others. I took my risks by trying this drug. I'm not willing to stop it to see what happens. As you should know, tremors are no fun! Since Ursodiol doesn't do any harm, why don't you take it and tell us it doesn't work.

I think your glass is half empty although you believe it to be overflowing. So be it.

Fred
 

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Fred, I'm sorry if you felt "abused" by my comments though I fail to understand why. My sole intention is  to protect PD patients from potentially harmful misinformation. Anybody can get in this forum and write anything, that's why we should ALL back up ANY claim by evidence. Furthermore, what may be a "safe" drug for you may be quite harmful to another patient, so we should all be very careful.

 

I'm actually very surprised you are not willing to confirm the therapeutic benefit of Ursodiol. there's absolutely no risk involved in missing a dose or two. And yes, it's actually VERY possible that sinemet started to take effect 3 weeks after increasing the dosage. I recently increased my levodopa from 300 to 400mg/day. My very persistent and bothersome cranial dystonia-which had been resistant to levodopa for more than 9 months- started improving about a month  after the first (increased) dosage.

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UPDATE:

 

I emailed Dr. Oliver Bandmann with my detailed information. I did ask him some questions which, understandably, went unanswered. :-(

 

What he did say was as follows:

 

"Dear Fred (if I may),
 
It's very nice to hear from you. Thank you for your detailed information. However, we really need to investigate UDCA in a formal clinical trial to establish both the best dose for PD patients and its efficacy. Unfortunately, I have been unable to obtain funding for such a study so far but I will certainly keep on trying!
 
Best wishes
 
Oliver"

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