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URSODIOL - A Potential New Drug for PD

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998 replies to this topic

#981 musicman

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Posted 23 July 2015 - 09:42 PM

Fred, did you not realize I was just being sarcastic? I was purposely going overboard as a joke...hence the :cool: :cool: :cool: :cool: :cool:   (can't even have fun on this forum anymore...)


Bob

 

Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#982 jds6958

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Posted 23 July 2015 - 09:56 PM

Also, uridine + DHA + choline has REALLY helped me with PD related anxiety and focus issues.  TUDCA did not seem to overcome that.

My mind seems much more clear.  Running two businesses and an international organization...was about to lose it there for a while.  All is well again :)



#983 MrFritz

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Posted 24 July 2015 - 10:48 AM

 

Fred, did you not realize I was just being sarcastic? I was purposely going overboard as a joke...hence the :cool: :cool: :cool: :cool: :cool:   (can't even have fun on this forum anymore...)

 

Sorry Bob,

 

I was really taken aback when I read your post. I wasn't at all sure where you were coming from as you have never been nasty or disrespectful even when we disagreed. Again, please accept my humble apologies. I guess I'm a little defensive after 2 years of continual attacks by you know who.

 

But But But

 

Deep down inside, I'm 100% sure that TUDCA or UDCA will help you. If you re-read my 1st initial post, you will see that my experience was similar to yours. My tremors were worsening even with Azilect & Sinemet until I started UDCA. If you ever decide to test the waters, we're all here to help you (may include samples).

 

Fred


71 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.


#984 musicman

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Posted 24 July 2015 - 10:53 AM

No worries Fred. (I probably should have used the :mrgreen:  instead of the :cool: ) Either that or forget the sarcasm altogether.


Bob

 

Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#985 MrFritz

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Posted 24 July 2015 - 07:03 PM

Universal plaque-busting drug could treat various brain diseases

 

If you haven't read TexasToms recent post, I suggest you do so. It sounds extremely promising.

http://forum.parkins...entist/?p=98624

 

Fred


71 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.


#986 geminik88

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Posted 10 August 2015 - 08:27 AM

http://m.medicalxpre...fast-track.html

#987 Brett

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Posted 10 August 2015 - 01:31 PM

Original source for geminik88's link: http://www.sheffield...tients-1.487787



#988 ShopGuy

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Posted 10 August 2015 - 06:32 PM

I assume some of you have seen this: http://m.medicalxpre...fast-track.html

 

Haven't read the actual paper yet (wish a link had been provided) but it looks interesting. Of course, this is some way away from a clinical trial.


First noticed symptoms June 2014.

Dx November 2014.

Tremor dominant (left leg only)

Mild dystonia (toe curling left foot)

Started Azilect April 2015. Stopped Azilect May 2015. Resumed July 2015.

Current: 6 mg. Neupro patch, 1 mg. Azilect, 1000 IU Vit. D3


#989 MrFritz

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Posted 10 August 2015 - 08:04 PM

Thanks to Lady "K" for the post. Maybe someday Dr. Bandmann will complete that clinical trial. As for me, my clinical trial concluded a long time ago. I am now 2 months shy of my 2 year anniversary on UDCA. I'm still going strong with no changes to my PD meds.

 

Those of you who regularly read this thread know that there are now a significant number of happy users of UDCA and TUDCA. Nobody has yet thrown in the towel. The only way you'll ever know if it really works is to try it.

 

Fred


71 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.


#990 jds6958

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Posted 10 August 2015 - 08:09 PM

Thanks to Lady "K" for the post. Maybe someday Dr. Bandmann will complete that clinical trial. As for me, my clinical trial concluded a long time ago. I am now 2 months shy of my 2 year anniversary on UDCA. I'm still going strong with no changes to my PD meds.

 

Those of you who regularly read this thread know that there are now a significant number of happy users of UDCA and TUDCA. Nobody has yet thrown in the towel. The only way you'll ever know if it really works is to try it.

 

Fred

 

I am 3 months shy of my 1 year anniversary.  Since then, my PD has been in the rear view, with my life in front of me.

 



#991 sphynx

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Posted 14 August 2015 - 11:40 AM

Hi, everyone,

 

My update is simply that I continue to take 600 mg per day of TUDCA. I have tried to increase the amount unsuccessfully, as I seem to get terrible heartburn when I take more.

 

I seem to tolerate 600mg though, so I hope that taking that amount is better than having none.

 

Regards

 

Anna



#992 MrFritz

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Posted 15 August 2015 - 08:09 AM

 

Sphynx Posted Yesterday, 12:40 PM

 

My update is simply that I continue to take 600 mg per day of TUDCA. I have tried to increase the amount unsuccessfully, as I seem to get terrible heartburn when I take more.

 

I seem to tolerate 600mg though, so I hope that taking that amount is better than having none.

 

 

Hi Anna,

 

Thanks for the update. I'm happy to hear that TUDCA is helping you. But I find it puzzling that you can tolerate 600mg but not more. So I wonder if your diet, some other medication or possibly another supplement may be a factor.

 

Although there are no definitive answers as to how much [T]UDCA we should be taking (assuming of course that it proves to be beneficial for you), I do believe that 600mg is an adequate dose to provide significant relief of some if not all symptoms. A higher dose may or may not provide additional relief. It is the continued progression of PD that we believe is addressed (to some degree) by the higher dosages (+1200mg). Dr. Bandmann, in his last e-mail to me, indicated that significantly higher dosages than that may be needed. On that subject, we will need to wait for the science to catch up to us as we're way ahead of the curve.

 

As you know, I have been on UDCA for almost 2 years. I have found that I can now tolerate it even on an empty stomach. I would suggest staying at 600mg for 3 or more months and then try to increase your dosage very slowly in very small increments (1/2 tab - 125mg).

 

Fred


71 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.


#993 sphynx

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Posted 15 August 2015 - 12:16 PM

Dear Fred,

 

Thank you for your reply and your sound advice. You are right when you say that it doesn't make sense that I cannot tolerate more than 600 mg of TUDCA. There must be another explanation, as you rightly suggest. I shall wait a few more months and then I will slowly try to increase it again.

 

Take care of yourself. Regards

 

Anna



#994 chad6

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Posted 17 August 2015 - 10:04 AM

I'm new here, and was compelled to register after reading this thread.

 

My Mom has had PD for about 15 years. Does fairly well considering the duration, but recently has had some trouble after switching to sinemet and the docs tweaking her depression meds.

 

Questions for you guys:

 

-What brand of TUDCA do you recommend?

-Does it have any effects on your anxiety / mood? Good or bad.

-Do you take with sinemet?

 

Thanks for everyone who has shared in here.

 

Chad


Edited by chad6, 21 August 2015 - 07:55 PM.


#995 jds6958

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Posted 17 August 2015 - 11:16 AM

I'm new here, and was compelled to register after reading this thread.

 

My Mom has had PD for about 15 years. Does fairly well considering the duration, but recently has had some trouble after switching to sinemet and the docs tweaking her depression meds.

 

Questions for you guys:

 

-What brand of TUDCA do you recommend?

-Does it have any effects on your anxiety / mood? Good or bad.

-Do you take with sinemet?

 

Thanks for everyone who has shared in here.

 

Chad

 

I have been taking Brawn Nutrition, and it has been working well.

I did not notice any effect on anxiety or mood.  It was not till I started taking Uridine (500mg per day), with DHA and Choline that my anxiety and focus improved dramatically.

I do not take Sinemet with TUDCA, but others do just fine.


 


Edited by jds6958, 21 August 2015 - 08:08 PM.


#996 Research Fiend

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Posted 18 August 2015 - 12:49 PM

I have good news, bad news on this topic.

 

The good news is that Tudca *dramatically* helped my husband, Doug. He stopped feeling stiff and cramped, and his nighttime thrashing around and yelling ceased. (He was previously taking and continues to take Azilect, which was mildly beneficial. The Tudca was *far* more effective.)

 

The bad news is that two different suppliers at amazon.com have changed their Tudca. In both cases, the capsules now look different,and have a very strong smell (not the case before). After a week of taking Tudca from the first one, Olympus Labs, the problems mentioned above returned. He is about to try Tudca from Brawn Nutrition, but I am quite anxious, since I compared the capsules to the last of an old bottle, and they are not the same.

 

I have ordered a third brand from Amazon, but this is really worrying me.

 

At Doug's last neurologist appointment, the doctor read a package I put together about Udca/Tudca, and said that while she didn't see the harm, she was not willing to prescribe Ursodiol. Very disappointing.

 

I will report back about Doug's experience with Tudca brands.

 

In the meantime, has anyone recently ordered Tudca that they are happy with?

 

Alternatively, has anyone in or near New York City found a neurologist (or any kind of doctor) who will prescribe Ursodiol?

 

Also, I would like to thank Fred for all of his work in this thread. It has been incredibly helpful to us.

 

Liz L.


Edited by Research Fiend, 18 August 2015 - 06:10 PM.


#997 MrFritz

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Posted 18 August 2015 - 01:58 PM

I have good news, bad news on this topic.
 
The good news is that Tudca *dramatically* helped my husband, Doug. He stopped feeling stiff and cramped, and his nighttime thrashing around and yelling ceased. (He was previous taking and continues to take Azilect, which was mildly beneficial. The Tudca was *far* more effective.)
 
The bad news is that two different suppliers at amazon.com have changed their Tudca. In both cases, the capsules now look different,and have a very strong smell (not the case before). After a week of taking Tudca from the first one, Olympus Labs, the problems mentioned above returned. He is about to try Tudca from Brawn Nutrition, but I am quite anxious, since I compared the capsules to the last of an old bottle, and they are not the same.
 
I have ordered a third brand from Amazon, but this is really worrying me.
 
At Doug's last neurologist appointment, the doctor read a package I put together about Udca/Tudca, and said that while she didn't see the harm, she was not willing to prescribe Ursodiol. Very disappointing.
 
I will report back about Doug's experience with Tudca brands.
 
In the meantime, has anyone recently ordered Tudca that they are happy with?
 
Alternatively, has anyone in or near New York City found a neurologist (or any kind of doctor) who will prescribe Ursodiol?
 
Also, I would like to thank Fred for all of his work in this thread. It has been incredibly helpful to us.
 
Liz L.


Hi Liz,

I away from home at the moment. Sorry to hear that you couldn't get a Rx for UDCA. Please pm me at mrfritz@comcast.net. I may be able to help you.

Fred

71 years old; dx'ed 2012; 1000mg Vitamin D3; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA (Ursodiol) on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.


#998 Dr.Ro

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Posted 31 August 2015 - 09:09 PM

Hello everyone:

This is my first post. My husband has YOPD, recently diagnosed. He has right hand and leg tremor and bradykinesia. He is on rasagiline since march, and started taking UDCA 500 mg, 2 days ago. This was following some research, I understand he is below reccommended dose, but we are testing tolerance first.

We read elsewhere some very interesting theories (supported by growing and recent evidence) about the brain-gut connection, and infection as a possible trigger of PD. He was tested for helicobacter p and he is (+), so he is taking probiotics and antibiotics. Probably will start on supplements soon, and he is taking trehalose, a kind of sugar found in mushrooms, that has been found to help eliminate misfolded proteins (studies done in Huntington models), very promising.

 

I was interested in reading Jon's website but the link appears to be broken?...

Thank you Fred for your perseverence in getting valuable info out there! 

 

Peace,

 

Ro

ps: sorry if not very articulate, english is not my first language...



#999 musicman

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Posted Today, 05:44 PM

I have been taking probiotics as well and feel pretty good. I was having some digestive issues but they seem to have resolved themselves after the daily probiotic.

 

TUDCA is an interesting subject...  http://www.medicalne...cles/297941.php


Bob

 

Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs





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