Week 2: Off Tauroursodeoxycholic Acid

As promised, this is my update on changes on my symptom improvements upon taking TUDCA since going off of it. We'll head straight to my list and update for this week.

Rating scale: 1 = PD symptom at its worst. 10 = PD symptom not noticeable, feels normal.

Week 2 After I Stopped Using TUDCA

Low bass notes became functional again

Pre-Azilect: 3
Post-Azilect: 3
With TUDCA: 10
Week 1 off TUDCA: 6
Week 2 off TUDCA: 4

With some effort, meaning at first I would have trouble hitting those low notes, I could do it, but even then they were weak and spotty, going in and out. I'm practically back to where I was pre-TUDCA.

Cogwheel motion

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 8
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5

Left hand is jerky motions most of the time, slower, difficulty manipulating objects with my left hand. Still unable for my left hand to match my right hand's speed, smoothness, or coverage when scrubbing my scalp when shampooing. Feels it is at the pre-TUDCA level.

Typing speed and ease

Pre-Azilect: 4
Post-Azilect: 6
With TUDCA: 8
Week 1 off TUDCA: 7
Week 2 off TUDCA: 6

Most of the time, like right now, typing is slow, and frequent backspacing to correct letters my left hand decides to throw in randomly or out of order. On occasion I'll have a spurt of easier typing, usually in the mornings, but those have become the exception.

I should note that for a period, around week 4 and 5 of taking Azilect, my writing speed increased when its benefits kicked in. By the time I started taking TUDCA, it had sunk back some where I recorded it above.

Dystonia

Pre-Azilect: 4
Post-Azilect:5
With TUDCA: 8
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5

The downward trend continued back to where I started pre-TUDCA. Especially the last 3 days, my left arm feels stiff and has some pain, only offset when the Sinemet is kicking in. When walking, my left arm doesn't move, like it is taped to my side. My left leg is causing me to walk like I have a limp at times. Today the dystonia has been more so, forcing me to massage and stretch my arm more. So it is becoming easier to tell when I have off times, when the Sinemet wears off.

Tremors in left hand

Pre-Azilect: 3
Post-Azilect: 5
With TUDCA: 9
Week 1 off TUDCA: 7
Week 2 off TUDCA: 5

The times when it is not shaking are few. I've noticed my right hand shaking more as well. I"m almost tempted to rank this one a 4, as it seems worse than it was once the Azilect symptom improvements kicked in.

Toe-curling

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 7
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5.5

As mentioned last week, this one is harder to gauge between the dyskinesia and the toenail fungus. I believe I did notice less pain this week, I suspect because the toenail fungus medication has made enough progress to do so. But I can still feel my toes wanting to curl when I'm on my feet for any length of time.

Conclusions

I believe it is clear that Azilect was not the source of the improvements I experienced upon taking TUDCA. The only way that could be true is if my PD progressed enough since stopping the TUDCA to coincidentally wipe out those improvements, which is highly unlikely. The next test should remove even that possibility. I believe in my case, this proves the symptom improvements after taking TUDCA were not from a second burst of Azilect improvements that coincidentally fell at the same time.

The only other plausible cause of symptom improvements upon taking TUDCA is the placebo effect. I feel this is highly doubtful for the following reasons:

1. No other non-prescription medication has improved my symptoms like that, even though I expected that some of them would do something.
2. A symptom improved, hitting low notes, that no other medication including Sinemet, Azilect, or the dopamine-agonist I took for a few months, ever touched. I wasn't even expecting it to happen, failing to even mention it in the original list of symptoms I was going to watch upon starting this. It is unlikely the placebo effect would have caused that improvement.

That said, I can't totally rule out the placebo effect. Unlike any other supplement I've taken, this is the first time I decided to give a day-by-day account of what it did. While I did it because some others reported improvements in the first few days of taking UDCA and wanted to document whether or not the same thing happened to me or not, I was expecting to show that not much would change. But it could be the exercise ended up providing the trigger for the placebo effect to make these improvements.

In the end, there is no way for me to totally rule out the placebo effect. That would require a double-blind, placebo-controlled clinical trial. Obviously that is impossible for me to do by myself. That said, I still believe that these levels of benefits would be near impossible for the placebo effect to produce, and for the reasons stated above, highly unlikely in my case. Even if they did come from the placebo effect, for me they are definitive improvements I experienced when taking TUDCA. The placebo effect would have to be strong with me.

The final conclusion of this test is that TUCDA did cause the improvements in my PD symptoms that I experienced upon taking it.

To further verify that, I'm now moving to test #3 of this experiment. I've ordered another bottle of TUDCA, which should arrive Wednesday. Unlike last time, I'll be starting with a daily dose of 1250 mg--the optimum amount noted by a member of the PD forum I'm on--instead of the 1000 mg dose I was taking. If symptom improvements reoccur, then I don't think there can be any question as to what caused them.

By next Sunday night, I should have enough time on them to report whether or not it has improved my symptoms again, assuming any improvements follow the same time-table as last time. I'll also be seeing my doctor this month, and I'll get his input on my experience thus far.

So until next time, have a great week!