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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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READY,  [RE]SET &  GO

My return from the brink

Tags: #Sciatica #Neuropathy #TUDCA #UDCA #Ursodiol #Gabapentin #Lyrica #Sinemet

Recently I alluded to having had some issues which may be of interest to our community. I said that I would soon write about it. I have been reticent in doing so because this experience has left me with little zeal to put pen to paper. However, after reading some recent forum postings, relating my experience may be of use to others.

Before I start, let me say that I am posting this in the Ursodiol ( [T]UDCA ) thread. But what I have to say is just as relevant to the entire community of PWP . See tags above. So, here goes.

I have suffered with back related issues for a number of years. My MRI’s indicate that most of my lower lumbar discs are bulging and/or herniated. My Orthopedist has strongly advised against any surgery. He did recommend that I see a Pain Management doctor. I followed his advice.

In 2015, upon reviewing my stated symptoms and MRI, my Pain Management doctor recommended an epidural. So in 2015 and then again 3 months later I had my first and second epidurals which provided very little relief. For the next 2 years I suffered while my symptoms continued to worsen. I thought that what I had was Sciatica although I never bothered to look up what Sciatica is. As good as I am with words, to this day, I cannot properly describe what ailed me. But I can tell you what I did not suffer from. So here it is as best as I can describe it to you.

My back generally did not bother me much. I would have a mild ache while standing and walking. I did not have pains in my legs or feet. Nor, did I have pins and needles or numbness. While standing in my stocking feet I would get very strong debilitating feelings in my feet as though I was standing on sharp gravel (without pain) or other odd substances. This would occur even if I was on a soft bathroom rug. Walking or changing the type of surface I was on helped but did not relieve these terrible feelings. Generally, I would have to lie down in bed until the issue passed. Typically, it would last 30-60 minutes.

Fast forward to December, 2016. During a regular exam by my Internist, he thought that what I described was neuropathy and suggested that I try Gabapentin. What a relief that was. A miracle! It relieved my symptoms completely. But, alas, it did not last. I had to steadily keep increasing the dosage. Also, it made me very tired and I was not comfortable driving. By mid-year 2017, I was taking 600mg 4x/day which was the maximum. Working with my Neurologist, I switched to Lyrica and titrated up to 150mg 3x/day. Again, it was a dose that worked for me but it was one step below the maximum.

After a month or so, I found that my dose of Lyrica was not providing enough relief. Knowing that I could not continue to increase my dose, I started to give my problem a lot of thought. My last dose of Lyrica was generally around 7PM. Yet, I would awaken in the morning without any discomfort. My issues generally would start just before lunch. I wondered why.

So I looked at my meds. In the morning after breakfast  (9:30 AM) I take 100mg Losartan and 5mg Amlodipine for BP plus 2 tabs of standard 25/100 Sinemet and 300mg Ursodiol, 150mg Lyrica, vitamin D3 and B12. After lunch and again after diner I would take 2 tabs of standard 25/100 Sinemet, 300mg Ursodiol plus 150mg Lyrica. At bedtime, 300mg of Ursodiol.

My brilliant revelation was that one or more of my meds, other than Lyrica, may be causing my problem. So the next morning I did not take any of my meds or vitamins. Voilà! No “foot” issues. I decided to skip all of my pills after lunch. Still no issues. After dinner no issues. After breakfast the next day, I elected to remain off of all drugs. I did this once before, stopping all drugs except Ursodiol, and managed quite well for 1 month. This time I stopped all drugs including my beloved Ursodiol.

I was enjoying being drug free and not having any foot issues but after a few weeks, things started to go south rather quickly. My tremors returned almost as they were when I was first diagnosed with PD and I developed a psychosis (sleep disorder) which almost sent me into rehab. Working with my Neurologist, I titrated back onto all of my drugs (including a small medicinal amount of Lyrica as needed and 1 tablet of 25/100 standard Sinemet. As for my sleep disorder, I’m still recovering from that little by little. What about the Lyrica and Sinemet you ask? Read on. There is a lot more detail that I could relate but I don’t want to bore you. So what did I learn and going forward, what am I doing today and what lesson(s) do I want to relate to you the reader.

My neuropathy was caused by an undocumented side effect to Sinemet. For some strange reason, this would occur 1½ to 2 hours after ingesting Sinemet. I found that I could not take more than 1 tablet of standard 25/100 Sinemet. At the suggestion of my Neurologist, I tried the slow release version of Sinemet. This version of Sinemet is approximately equivalent to 80% of the standard version. I now take 1 tablet of 50/200 Sinemet CR 4x/day (every 5 hours). I do occasionally experience some off time during the 5th hour. When necessary, I can and will supplement this dose with 1 tablet of 25/100 standard Sinemet. Right now, this regimen is working for me. However, it is not as good at controlling my tremor as my prior dosing. But thankfully, I have very little reoccurrence of neuropathy. In the future, I may readjust my dosing schedule to see what works best for me.

So, to the few recent posters who are having strange problems (especially neuropathic), you may want to consider drug side effects before seeking other remedies. But be forewarned. Do not abruptly stop any of your medications cold turkey. Some meds can cause severe physical and/or psychological issues. My sleep disorder was caused by my abrupt stoppage of Lyrica. It is probably okay to experiment with skipping a dose or two to see if this is what ails you. However, I would strongly suggest that you first seek the advice of your Neurologist or MDS.

Lastly, this unplanned episode allowed me to reexamine life with and without Ursodiol (UDCA). I can attest to Rick Copple’s findings. [T]UDCA is a potent adjunct to controlling our PD symptoms. As for slowing PD’s progression, my experience says it does. But this is not in any way definitive. Like Rick, I’m back on it and will remain on it for the foreseeable future.

If you have any questions, please feel free to post them here. I will also respond to private emails or messages but would prefer an open discussion. I hope someone benefits from this story. Thanks for taking the time to read it.

Fred

mrfritz@comcast.net

 

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Good morning Fred. Did you test to see if your beloved Ursodiol is causing this undocumented side effect with Sinemet? It should be a pretty simple test to find out. Take your original Sinemet, wait till the neuropathy returns, then stop the Ursodiol. Neuropathy sucks and the last thing you would want is for it to become permanent. I can attest to the fact that it’s no picnic living with it on a daily basis. One final note, have you tried Rytary?

Dave

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6 hours ago, DaveN said:

Good morning Fred. Did you test to see if your beloved Ursodiol is causing this undocumented side effect with Sinemet? It should be a pretty simple test to find out. Take your original Sinemet, wait till the neuropathy returns, then stop the Ursodiol. Neuropathy sucks and the last thing you would want is for it to become permanent. I can attest to the fact that it’s no picnic living with it on a daily basis. One final note, have you tried Rytary?

Dave

Sorry if I didn't address that sufficiently.

After being off ALL of my meds and vitamins, my tremors started to get the better of me but I had zero neuropathy (or whatever it was). I knew I had to get back on Sinemet (Carbidopa-Levodopa). So that was the first drug I restarted with. My standard Sinemet is a 25/100 tablet which is scored so I can readily break the tablet in half. Normally, I was taking 2 tablets per dose 3 times per day. By trial and error over the course of a few weeks, I found that every time I took more than 1 tablet of standard 25/100 Sinemet within a 4 hour period, the neuropathy would ensue. So I then maintained a regimen of 1 standard Sinemet tablet per dose every 5 hours (4x/day). Although this dose helped my tremors, it was grossly insufficient. I then added my Azilect (Rasagiline) [Sorry if I left that out in my initial post.] which did not help my tremors. Nor did it bring on any neuropathic issues. Lastly, I added my Ursodiol. This did help reduce my tremors and it did not cause any neuropathy. After I was stable on this regimen, I again tried to increase my dosage of Sinemet and found that adding even a half tablet would caused my neuropathy to reoccur.

The curious thing about this neuropathy issue was its timing. Like clockwork, it would rear its ugly head approximately 2 hours after taking more than 1 tablet of standard Sinimet and it would last for 30-60 minutes before subsiding. So my Neurologist suggested that I try a combination of standard Sinemet and its slow release form (Sinemet ER, CR or SA). I experimented with this and found that I can tolerate 50/200 Sinemet CR. I could even add 1 25/100 standard Sinemet tablet to the mix without issue. The proper Sinemet dose for me is probably somewhere in the middle.

So Dave, I am sure beyond any shadow of a doubt that Ursodiol did not contribute to this issue in any way. As for Rytary which I have not tried, it is a brand name for Sinemet CR but in capsule form. Also, in case you were wondering, I did not restart my BP meds and vitamins until I had this "neuropathy" issue under control. FYI, I never restarted taking Lyrica and no longer have any need to do so.

Fred

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Fred,

Rytary is not the same as Sinemet CR. It is a different formulary. You’ve made that association before and felt it is necessary to correct you on that. Rytary was designed to avoid the ups and downs that occur with Sinemet IR and CR.  Rytary is not for everyone as the dose is difficult to regulate because of its time release capabilities.

Dave

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3 hours ago, DaveN said:

Fred,

Rytary is not the same as Sinemet CR. It is a different formulary. You’ve made that association before and felt it is necessary to correct you on that. Rytary was designed to avoid the ups and downs that occur with Sinemet IR and CR.  Rytary is not for everyone as the dose is difficult to regulate because of its time release capabilities.

Dave

 

Rytary vs Sinemet cr

By Inge, September 21, 2015 in Ask the Pharmacist

Top of Form

Posted September 21, 2015

 

What,is the difference between Rytary and Sinemet cr?  They both have the same ingredients 

MComes RPH    183

  • Board Certified Pharmacist, Medical Board Member, & Consult
  • Ask the Pharmacist Moderators
  • Posted October 9, 2015

In a nutshell, Rytary is supposed to last longer which will shorten off times and increase on times. It is formulated in a capsule form to give a longer release mechanism than sinemet CR does.

I will always tell patients that if you are on the sinemet CR and it is working, there may be no s3nse in changing to a new med and have to try to whole process again. If is patient is having issues with off times, this may be a good medication to try.

Hope this helps

 

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Hi one and all. Sorry for delaying getting back to you after my DBS surgery, but as you can imagine, things have been a little hectic of late, dealing with the aftermath of everything.

 

First, the good news. The DBS surgery was a success! Leads were placed well, and I'm currently on absolutely no medications, yet my tremors are controlled.What isn't so well controlled now, is my balance. The higher it seems my DBS is turned up, the more unstable I get. The lower settings are better on that end, but put me borderline on tremors.  Bad enough that no matter how low I turn it down, I don't seem to have the ability to do Zumba and am unstable at playing Pickle Ball. 

Of course, it has only been a month now since my DBS has been turned on. You can see the difference between the before and after Me's at the following links:

 

This is me right before my DBS was turned on. You don't even need to watch the whole thing to see the difference.

http://rickspdjourney.blogspot.com/2017/10/my-dbs-journey-day-15-preparing-for.html

and  one week later,

http://rickspdjourney.blogspot.com/2017/10/my-pd-journey-week-2-of-dbs-programming.html

Difference between night and day! 

The only negatives about the experience has been the normal culprits: memory and balance/gait. The memory issues are more of a nuisance than anything critical. Just forgetfulness of small details. ADHD like symptoms, which I've never had to deal with before. The gait and balance issues are a bigger deal. At a minimum, they might prevent me from doing Zumba fully. Right now I've restarted my Zumba class doing all chair Zumba. This was complicated with a recent prescription change in my left eye due to a cataract. Since putting on my new glasses, I've fallen around 6 times. Nothing major happened. But I don't want to wait until it does either. So I've scheduled a cataract surgery, as well as I'm doing as much without my glasses as possible (mainly need them for driving).

Of course, they say give this around 3 to 6 months before deciding whether something will have to be lived with or not. So I'm hopeful with further programming and time, this too shall pass in a couple more months or so. Keeping fingers crossed, any way. But, even if this is something I'll have to live with, this will have been worth it. To be off the medication rollar coaster I was on with off times and dyskinesias, having only one or two hours per dose that I felt "normal", compared to being "normal" all the time, 24/7! I'd give up Pickle Ball and Zumba for that! Still, I hope for the best. :)

Sorry to hear about your ordeal, Fred. I hope it all works out for you, one way or another. I have suspended taking the TUCDA for the time being, mainly to give DBS a chance to normalize before I throw in something else into the mix. But I'll be back on it soon. Then I'll be able to report how, if any, it aids DBS symptoms, if it does. I don't know if it will or not, mainly because I think the main way it supports current DBS symptoms may be due to its effect on liver function, making it more effective at processing oral medications like levodopa. Since DBS doesn't go through the "liver" (obviously), it will be interesting to see if it has any noticeable effect on those symptoms. 

Later!

 

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