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MrFritz

URSODIOL - A Potential New Drug for PD

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11 hours ago, RickCopple said:

My progression while on TUCDA during the end of 2015 and 2016 were a direct result of getting off Amantadine. It is well known that people who get off of it, if not done right, can have their symptoms increase. The first time I didn't tyrate, and the second time was from a high dose while on the clinical trial as I detailed. Other than those two instances, I didn't progress.

So, it sounds like the Amantadine was the drug that was keeping your symptoms at bay - not TUDCA.  Essentially, you're saying that if you hadn't gotten off Amantadine, then you wouldn't have had any progression.

11 hours ago, RickCopple said:

Aside from that, when I'm on it, my symptoms are better. When I'm off it, they get worse, as I've detailed elsewhere. But my neurologist and I have been talking about getting DBS for a long time because even early on, I have a very small "sweet spot" between symptoms and dyskinesia, so that I have either one or the other, with only about an hour to an hour and a half of "normal" time for each dose. That is the main reason for the DBS, so I can get off this medication roller coaster and feel "normal" most of the time, and I can get part of my life back and have several more good years before this disease forces my wife into caretaker mode.

The bottom line is that you've had so much progression in only 4 years that you have had to take a high dose of Sinemet and consequently have serious dyskinesia.  Now, you're having brain surgery.  In my opinion, that's a HUGE fail for TUDCA!

Again, my question.  What is TUDCA claimed to do? 

Edited by PatriotM

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1 hour ago, PatriotM said:

Again, my question.  What is TUDCA claimed to do? 

Why are you giving Rick the 3rd degree. Just as I have done all these years, Rick is telling you his experiences. Be grateful and learn from it.

BTW, my recent ordeal, which I will be sharing with you very soon, corroborates what Rick has alluded to regarding [T]UDCA's effect on symptom relief and progression. Jon and others have also posted similar experiences.

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Fred,

I am simply trying to determine what exactly you are claiming in regard to (T)UDCA).  It didn't seem to slow Rick's progression or to even mask his symptoms.  Otherwise, why is he taking such a big dose of Sinemet; why does he have dyskinesia; and why does he need brain surgery after such a short time since diagnosis?  In your case, you couldn't lower the dose of your own Sinemet without your symptoms recurring.  So, what does it do?  It doesn't appear to slow progression or even treat significant symptoms, so what does it do?

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12 hours ago, DaveN said:

Rick,

I am unaware of Amantadine little known fact.  Can you point to some documentation or studies indicating that Amantadine will contribute to an increase of symptoms or accelerated progression?

Thanks.

Dave

Hi Dave,

I believe you can find some on this forum if you do a search. I've mostly read about it in warnings that one must taper down gradually from it. Here's one sample of what I found in that regard:

 

Quote

 

PRECAUTIONS

Amantadine should not be discontinued abruptly in patients with Parkinson’s disease since a few patients have experienced a parkinsonian crisis, i.e., a sudden marked clinical deterioration, when this medication was suddenly stopped. The dose of anticholinergic drugs or of amantadine should be reduced if atropine-like effects appear when these drugs are used concurrently. Abrupt discontinuation may also precipitate delirium, agitation, delusions, hallucinations, paranoid reaction, stupor, anxiety, depression and slurred speech.

 

http://www.druglib.com/druginfo/amantadine/warnings_precautions/

Both times my symptoms increased while on TUCDA was when I discontinued Amantadine.

 

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3 hours ago, PatriotM said:

So, it sounds like the Amantadine was the drug that was keeping your symptoms at bay - not TUDCA.  Essentially, you're saying that if you hadn't gotten off Amantadine, then you wouldn't have had any progression.

The bottom line is that you've had so much progression in only 4 years that you have had to take a high dose of Sinemet and consequently have serious dyskinesia.  Now, you're having brain surgery.  In my opinion, that's a HUGE fail for TUDCA!

Again, my question.  What is TUDCA claimed to do? 

Either I'm not communicating well enough or you're going to see what you want to see.

I don't follow your logic on the Amantadine. It did improve my symptoms some, especially my dystonia in my left arm. That's the main reason I continued to take it, as it did very little to help my dyskinesia other than to spread it out over the whole dosage period. If the worsening of symptoms after getting off Amantadine was due to a slowing of progression and it suddenly sped up (note, there is no credible evidence or claims that Amantadine slows progression) once off of it, you'd expect a corresponding increase in benefits on the front end, like I experienced with TUCDA. Rather what we have here is some targeted benefit increases upon taking it, but upon discontinuing it a huge decrease in benefits, even in areas like tremors that it seemed to have minimal impact on. Either one could say that Amantadine masked the progression, which I've not heard any claims it does that, so one would expect if that were the case to see progression happening over the course of taking it and not all at once when you get off of it; or Amantadine caused that worsening of symptoms as is documented that it can do, obviously in spite of my rigorous exercise program and any potential anti-progression of TUCDA.

 

On the DBS issue, be aware that long before I started taking TUCDA, I've had dyskinesia problems. TUCDA has nothing to do with dyskinesia other than potentially enabling someone to lower there Sinamet dose, as I did earlier this month upon resuming TUCDA. In my second year, my symptoms had progressed a good bit, and my neurologist at the time told me to double what I was taking, which was 100 mg levidopa 3x/day. I was immediately hit with dyskinesias. Unfortunately for me, I have a very small sweet spot. The best I've been able to do is hit it for an hour or two during a dose while on my way to dyskinesa or tremors as it goes up and down. I'm getting DBS primarily to address this problem because nothing else has worked. I can't reduce my levidopa enough to get rid of dyskinesia without getting bad tremors, or raise it up enough to get rid of the tremors without getting some significant dyskinesias. That's been true no matter what level of progression I've been on. That's why I need brain surgery and it has little to do with my progression. 

 

Bottom line, I've related my experience with the drug. I've interpreted the results as best I can, knowing what I know. It has yet to be proven that (T)UCDA does actually slow progression in PD. At current, that is the hope based upon cellular studies and one small clinical trial for ALS. The jury is still out on that one, but it appears there is a clinical trial underway that may resolve that question in the near future. I suggest we wait for those results before making any dogmatic statements.

 

I'm afraid I don't have time today or tomorrow for any more extended discussion on this. I'm going in for a CT scan today and tomorrow is the surgery to place the leads into my brain. Needless to say, I'll be busy and not thinking too much about this discussion. I may have more time this coming week since my activity level will be greatly reduced on the exercise front. Until then, I bid you all farewell. 

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I used to read this forum religiously, but stopped because this running debate over TUDCA had become over the top tedious.  I just tuned back in assuming everyone had finally gotten bored repeating themselves and moved on, but not so.

The simplest concept and most obvious observation that every person on every Parkinson’s forum immediately figures out is that some drugs and supplements work for some people and not others. Is that really so hard? If a particular drug or supplement does not work for you, the only intelligent thing you can say about it is that it does not work for you. It is fundamentally ignorant to argue a supplement doesn’t work because it doesn’t work for you.

 

The TUDCA skeptics, for example, have written many posts telling us what has worked for them, yet I don’t see anyone questioning the veracity of their comments. Everyone who reads their posts has the class to take them at face value, yet for the better part of four years now and the better part of 47 pages, they have disparaged Mr. Fritz insisting that TUDCA does not work - even though there are others who say it does. The only conclusion one can draw is that they are not so much interested in teaching and learning, that is, helping other PWP as they prefer being argumentative.

 

“What does TUDCA do?” It helps some people with Parkinson’s disease. Is that simple enough?

 

I believe Mr. Fritz must enjoy this endless back-and-forth as much as the naysayers do, otherwise he would’ve quit responding long time ago.

 

Get a life, people.

 

See you next year.

Edited by MarcB
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I participate in a different forum now, where I have quite enough friends, which is very enjoyable because it's a large group and everyone shares their experience and research without all the acrimony. There are a lot of robust discussions because of course people disagree and there's two schools of thought on most Parkinson's therapies. You'd like it. As a diligent and knowledgeable researcher, your input would really benefit a lot of people, but I can't tell you which forum it is because you know who might jump on just so they would have a bigger audience to aggravate. ha.

Edited by MarcB
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