Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

URSODIOL - A Potential New Drug for PD

Drug Treatments

  • Please log in to reply
194 replies to this topic

#181 miracleseeker

miracleseeker

    Advanced Member

  • Members
  • PipPipPip
  • 901 posts

Posted 08 June 2014 - 11:22 AM

Totally relate to picking up rigid person off the floor.  Everything you read or see online does not work on someone who is dead weight and you the caregiver is doing it alone.  I cried too reading the posting.  I get it.

 

I finished off a jar of coconut oil for my mom  that put in her oatmeal. I was doing this for over a month.   Unfortunately for her she's not any smarter or alert.  Glad it works for you.   Keep trying though.  What else can we do right?


Edited by miracleseeker, 08 June 2014 - 02:39 PM.


#182 elle

elle

    Advanced Member

  • Members
  • PipPipPip
  • 109 posts
  • LocationEscapee from Houston to small town Texas

Posted 08 June 2014 - 12:15 PM

Such kindness here!!  So much support!  I have read here for so many hours and learned so much about PD but was nervous to post. Perhaps I was afraid of spilling my guts which I just did. I just thank you both for creating an atmosphere where someone can be honest and not be labeled a whiner.

 

I have unsuccessfully tried to hook up with a PD support group in Houston.  Either we were not progressed enough or they don't have a group on the west side of Houston.  Now that we have progressed they just did not call me back.  And they are supposed to be very active!  Traveling all of that way is becoming too hard anyway so thanks to each and every one of you for all you do to share your experiences and help one another.  It is exactly what I have been needing!



#183 miracleseeker

miracleseeker

    Advanced Member

  • Members
  • PipPipPip
  • 901 posts

Posted 08 June 2014 - 02:42 PM

Oh Elle.  We are all in the same boat.  Hang in there and keep asking questions.  Nothing ever stopped me. I'm almost at 800 postings here. :razz:   Feel free to email me privately if you want to talk some more in private.  I don't want to hijack Fred's posting and turn this into a support group for caregivers.



#184 New normal

New normal

    Advanced Member

  • Members
  • PipPipPip
  • 340 posts
  • LocationArizona

Posted 08 June 2014 - 03:08 PM

Hi all...

Well....may be apathy....but I quit taking the coconut oil after being one of the first to espouse its great benefits. I don't know why I quit...kinda like I don't know why I still have not done my taxes.

My tremors and other symptoms have worsened...I am taking 50/200 l dopa every 6 hours...with break out after 4 hours...I am to start taking Azilect...but have not started, as I am skeptical about its side affects.

I started taking Aloe Vera juice after reading Chrissie's post and noticed an improvement. Since I store it next to my coconut oil, I was reminded every day I shd be taking the oil.

SOOOOOO, I started taking the oil again plus the aloe Vera juice!! I mix it in a potent meal replacement vitamin powder drink with ice and fruits. Again, I have noticed improvement with symptoms!!! After being dx'd for a year and researching daily, I know PD has numerous etiologies...and each person is different...therefore, for some people, coconut oil...aloe Vera juice, Ursodiol ...or tea leaves in a pink cup....may work. For others, not.

We all have to investigate our own solutions....if natural elements do not have bearing on symptoms, then why wd reputable sources encourage PWP to eat protein at certain times relative to meds? What we put in our bodies has some impact..noone knows what the mechanism is...but there IS some kind of connection. (I understand the explanation of protein and dopamine)

I tried to get a rx for Ursodiol from two neuros...and cd not. I live close to Mexican border, and a US GP with a good reputation and US educated, said there are controls on Mexican meds...so with that, I am going to try to get it. Like Elle, I figure I have not much to risk...I accept that it is likely I cannot cure PD...perhaps slow it..but, I CAN feel like I have a certain degree of control of my life..placebo or not, I can at least feel I can TRY to oppose the foe, and not be a victim in the corner of the room awaiting the beating.....

Someone mentioned personality traits...and with no offense intended, I think we can agree that certain personalities have more problems with conforming or accepting the existing consensus of approved remedies..some of us have lived long enough to see the "experts" are not ALWAYS right..and we have all seen the vacillating opinions of medical science.."eggs are good for you...or not....coffee is good for you...or not...vitamins work...or not...cholesterol is bad...or the treatments cause cancer..." The list is long...

This is not to encourage ANYONE to lose confidence in their doctors care or to show disrespect for the profession that is engaged in finding a cure. I am merely saying that some people seem to need to participate more in the decision making of their care than others..Neither group is right....neither is wrong....and we can learn from each other...

So, good for you Fred...Chrissie, Noah,,,Christie, my friend Roger, Anniken, Miracle Seeker, beau's mom, and so many others...independently traveling the road yet collectively fighting the same battle....I am impressed with the individuality of each person...and I think that is the true thread of this post.....

Sharing our own discoveries...amid an audience of intelligent adults who should know we all are laymen and not authorities ..... This is all for discussion purpose, and NO ONE should eat, drink, or do anything they are not comfortable with...research, investigate, and choose for yourself.

You just gotta love those pioneers!!! Thanx, Fred & Chrissie! Mold on cheese ? ..hmmmmm. Like THAT is gonna help anyone!!! :)

#185 elle

elle

    Advanced Member

  • Members
  • PipPipPip
  • 109 posts
  • LocationEscapee from Houston to small town Texas

Posted 08 June 2014 - 03:33 PM

Miracleseeker...you are a sweetheart...I just might do that!  When I get time....

 

New normal...you expressed it perfectly.  To each his own and it's up to all of us to chose our own path.  But without each other how much less we would know about the choices?  You go girl!



#186 MrFritz

MrFritz

    Advanced Member

  • Members
  • PipPipPip
  • 131 posts
  • LocationNew Jersey

Posted 08 June 2014 - 04:57 PM

Hi Ladies and everyone else,

 

Please feel free to "hijack" my thread. I consider this thread to be the definitive "alternative self help" guide. All the other threads only discuss specific problems and conventional therapies which only help to control symptoms rather than the disease.

 

Just a note about Azilect: I never thought that it provided any benefit. However, after stopping my meds for a month and subsequently restarting them, the last med I added was my Azilect. I can not speak for its possible effect in slowing down the progress of our disease, but I can say that I did notice a very slight effect in easing my tremor. Is Azilect worth the price for such a small benefit? We must each decide that for ourselves.

 

If you want to try UDCA (Ursodiol, Urso, etc.) but can not get a prescription for it, do try TUDCA (Tauroursodeoxycholic Acid) which you can purchase legally over the counter at most health food stores or via the Internet (try Amazon). I'm confident that it will yield similar results. If you do try it, kindly let us know your findings.

 

This coming week, I am going to see my civilian Neuro. I will be posting my current status after I see him.

 

Fred



#187 MrFritz

MrFritz

    Advanced Member

  • Members
  • PipPipPip
  • 131 posts
  • LocationNew Jersey

Posted 11 June 2014 - 04:43 PM

MONTH 8 STATUS UPDATE

 

Good afternoon fellow PWP.

 

Monday, June 16, 2014 will mark my 8th month anniversary since I started taking UDCA. Last week also marked my second month since I increased my dosage of UDCA from 600mg/day to 1200mg/day and I have not experienced any side-effects. Today I saw my civilian Neuro. As I indicated previously, I am going to give you a full update.

 

On 4/29/2014 while taking 1200mg UDCA but off of ALL of my PD meds for a month, I went to see my VA Neuro for a consultation including a full PD evaluation and a blood test to verify that UDCA was not causing any liver issues. Overall, my PD baseline was an improvement over my pre-UDCA condition from a year earlier. My blood test showed a slight elevation in acidity (to be expected) and normal liver functions. My VA Neuro advised going back on my meds and to keep taking UDCA. As you already knew, I resumed taking Sinemet and Azilect.

 

Today, my civilian Neuro was very pleased with my progress. I gave him a complete synopsis of what had transpired since I saw him last December as well as a copy of the VA's PD evaluation. He said many patients occasionally take a hiatus from their medications for various reasons. He noted no change in my condition and therefore made no changes to my current medications. He told me to continue what I'm doing since it appears to be working for me and to return again in another 6 months.

 

Just a note about Sinemet: I asked my Neuro if I should increase my Sinemet dosage in the event that my tremors increase. He advised to stay at this level for as long as possible because Sinemet causes its own set of problems. Don't we know it!

 

I told him that many of you wanted to try UDCA but their Neuros would not prescribe it. Again, I asked him why he prescribed UDCA at my request. He said that he does not believe in patients doing their own human trials, but knowing that UDCA is such an old and well understood drug that would cause no harm, he let me try it. The key was "cause no harm." Now that's a "real" doctor.

 

So where am I now? I have resumed my original dosages of Sinemet and Azilect. I still have some right hand tremor - a tad more than I had before I went off my meds. But, I no longer need to take any Clonazepam for my Nocturia and RBD. However, I have started taking 2 Advil tablets (400mg Ibuprofen) at bedtime which I believe helps with these issues. Typically, I go to bed at 11PM and I don't awaken until 5AM.

 

I would have liked to provide you with an update on our other two adventurers. But, I have not heard from them recently. I know that TW in Taiwan had stopped UDCA due to recurring headaches, a side effect of UDCA. I don't know if he will try again. Jenny in AU was doing well at last report and had stopped taking her Sifrol. Hopefully, they will provide their own status updates for you shortly.

 

Fred
 



#188 elle

elle

    Advanced Member

  • Members
  • PipPipPip
  • 109 posts
  • LocationEscapee from Houston to small town Texas

Posted 12 June 2014 - 01:49 AM

So Fred...

Forgive me if I did not take this all in even thought I did read all of the pages.  In the beginning you dropped all of your Parkinson's meds and instead took UDCA  and as I recall you felt better, more alert and perhaps more energetic?

 

Now that you have added them back is the only advantage that you are able to quit taking Clonazepam?  Or are you still feeling a lot better as well as being convinced that the new drug is slowing the progression of the disease?  You don't have to go over the whole history;  I am just not getting or remembering the primary advantage....forgive me!

Thanks!



#189 MrFritz

MrFritz

    Advanced Member

  • Members
  • PipPipPip
  • 131 posts
  • LocationNew Jersey

Posted 12 June 2014 - 11:56 AM

Hi Elle,

 

Yes, you did get it wrong. This is understandable because this is a very long thread to read and comprehend. It is also interspersed with some other topics and banter.

 

Excluding other interspersed topics (i.e., Coconut Oil), this thread is a chronicle of my self-experimentation with Ursodiol. The stopping of my PD medications was just an experiment to see what would happen. It looked promising at first but that only lasted a month until all of the dopamine flushed out of my system. However, it is true that I did feel more energetic and alert without Sinemet. But, as I found out, I need to take Sinemet to control my tremors. Also true is that I found out that I didn't need one of my other medications (Clonazepam).

 

To cut to the bottom line, this is what Ursodiol does for me:

  • Provided an additional "dopamine like" boost which reduced my tremors.
  • Slowed or Stopped my PD's progression (conjecture).

As my chronicle states, I have not had any advancement in my PD's progression nor any increase in my medications to control tremors since I started taking Ursodiol 8 months ago.

 

Please re-read my very first post. http://forum.parkins...for-pd/?p=63681

 

If you have any other questions, I will be more than happy to answer them. Thanks for reading.

 

Fred



#190 elle

elle

    Advanced Member

  • Members
  • PipPipPip
  • 109 posts
  • LocationEscapee from Houston to small town Texas

Posted 13 June 2014 - 12:42 AM

OK thanks!  I am usually quite sleepy when I read here.  It couldn't possibly be age, lol.  Well, as you know I am thinking of taking the article to our neuro so as your progress grew and changed I just wanted to make sure I got the primary reason you still feel it is so beneficial.



#191 Research Fiend

Research Fiend

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 13 June 2014 - 05:03 PM

Fred:

 

I so appreciate your efforts in this topic.

 

I would really like my husband to be able to try Ursodiol, but do not think his current lineup of doctors will cooperate. Would it be possible to get the name of your doctor to try to make an appointment? (We are in Westchester county NY and could travel to NJ.) My personal e-mail is sickofnyc@gmail.com.

 

In any case, thanks for your efforts here.

 

Liz L.



#192 Research Fiend

Research Fiend

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 13 June 2014 - 05:05 PM

Elle:

 

In case you would like to talk to another despairing caregiver, I am here. My e-mail is sickofnyc@gmail.com, and perhaps we could exchange phone numbers. I don't know about you, but I find this a very lonely position to be in.

 

Liz L.



#193 MrFritz

MrFritz

    Advanced Member

  • Members
  • PipPipPip
  • 131 posts
  • LocationNew Jersey

Posted 13 June 2014 - 07:22 PM

Hi Liz,

I'll send you a private email shortly.

Fred

#194 elle

elle

    Advanced Member

  • Members
  • PipPipPip
  • 109 posts
  • LocationEscapee from Houston to small town Texas

Posted 14 June 2014 - 11:30 AM

Thanks Liz...I will email you.,



#195 MrFritz

MrFritz

    Advanced Member

  • Members
  • PipPipPip
  • 131 posts
  • LocationNew Jersey

Posted 15 July 2014 - 04:13 PM

BUYING  UDCA  WITHOUT  A  PRESCRIPTION

 

 

If you want to try UDCA (e.g., Ursodiol, Urso, etc.) and your doctor will not prescribe it, it is legally available without a prescription in Mexico. It is 100% legal to bring it across the border into the US provided that you declare that it is for your own personal use. It is not legal for the Mexican pharmacy to ship it into the US. If you want to know more about this, read the following:

http://www.peoplesgu...1med-index.html

http://www.peoplesgu.../cheapmed1.html

http://www.peoplesgu...cheapmeds2.html

One forum reader recently purchased 250mg capsules of Urso from The Purple Pharmacy in Algodones. The price was $25 for 50 tablets. Before running across the border or sending a family member, check with your Mexican pharmacy to see if they have it in stock. As for Canadian pharmacies, I do believe that Canada, like the U.S., requires a prescription.

Fred


Edited by MrFritz, 15 July 2014 - 04:15 PM.





1 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users


    Bing (1)