Saturday, February 21, 2015

Tauroursodeoxycholic Acid - Round 2: Final Post

Sorry for the delay on this final post on "Round 2" of taking TUCDA. There are multiple reasons for the delay. Before I get into that, let me give you a quick update on my TUCDA experience since the last post.

No need for a detailed account. The short and the long of it is that not much changed since my last post. The improvements I experienced in the first 4.5 days have been sustained, but not significantly improved on. So much for the placebo effect!

So what I've learned through these tests is the following:

1. The improvements I experienced the first time didn't come from Azilect. Upon stopping TUDCA for two weeks, those improvements disappeared with no change in my Azilect dosage.

2. With around 99% certainty, I can say those first improvements did come from taking the TUDCA. Not only because stopping the consumption of it caused those improvements to disappear, but because upon resuming it those same symptom improvements returned, even if not to the level of benefit from the first time.

3. Consequently, I've decided for the current time to continue taking TUCDA. In ordering more, the supplier I was using had run out (probably due to more people using it now) and I had to use a more expensive supplier. Rats.

4. Since I'm taking toenail fungus medication, which can hurt the liver, and TUDCA is used primarily for liver support, I was interested in a blood test check on how my liver was doing through all this, last week. Everything came out normal. Been on the toenail fungus med since Dec 1st.

5. To help pay for TUCDA, which can amount to $80-$100 a month, I'm reevaluating the list of supplements I'm taking to see where I can cut back and/or find more economical means. I've found a cheaper but still good multivitamin to take as well.

As to why TUCDA hasn't helped as much on this second round as the first, it appears the main reason is because in the two weeks off TUDCA, my symptoms, primarily my left arm/hand stiffness which affects several other areas--typing, cogwheel motion, and tremors--, not only returned to pre-TUDCA state, but a pre-Azilect state.

That most likely meant either my disease symptoms had progressed that much since taking TUDCA and/or during the first round of taking TUDCA, the Azilect began to lose some of its effectiveness. The second round was able to halt that slide and improve it, but not to the levels I had before. If due to the latter cause, I'd be in this position anyway because TUDCA wouldn't stop Azilect from losing its effectiveness, I don't believe. If the former, though my symptoms have never progressed that fast before, one could make the case that my experiment cost me some symptom benefits.

If it is due to Azilect losing its effectiveness, I may be able to find that out in about 3-5 weeks. Wednesday, I went from taking a 0.5 mg Azilect dose to 1 mg dose per day. Assuming Azilect increase dosage shows symptom benefits around 4-5 weeks from taking it, like the last time, I may find myself back to the improvement levels the first time taking TUDCA. Time will tell, but it also may prove inconclusive if not much happens.

So where do my symptoms stand now? In the last 2-3 weeks, I've noticed two main things. One, in the morning my arm stiffness seems to be its least, and progressively gets worse as the day goes. That means my best typing time is in the mornings when I'm fresh.

Two, for the first time, I've had distinct off times between doses of Sinemet, the primary medication for keeping PD symptoms in check. Usually after a period of time, it becomes less effective. I've been on this dose since January of 2014. I usually take the pills 6 hours apart. By the time I take my next dose, I can feel it in my left arm and tremors. This is despite the Azilect which is supposed to help smooth out the off times.

Which leads me to a third possible explanation for my apparent progression. It could also be due to Sinemet not doing as good a job as before. Why it progressed during those two weeks so much, I don't know. But PD progression is an unpredictable animal too.

In addition, the tremors in my right hand, which have been minor, have become more pronounced and consistent. Still, I don't experience a lot of stiffness in my right hand that slows my ability to type with it like the left. Blessings I can count, though I doubt that will last.

But some evenings I can barely use my left hand at all, and have to type one-handed. Slow going. Some things like this post can take hours to compose, though tonight I seem to be going at a fairly decent pace . . . so far.

One other possible reason I gave for the loss of symptom improvement levels was my diet change: came off a week of no sugar including fruit to adding fruit and grains back into my diet. My theory, though I felt a long shot, was that adding sugar back in was a shock to my system that had shut down sugar processing. Insulin thought it was on a holiday, essentially.

Though some responses I got thought the diet change may have played a bigger role than I thought, I don't think so. One, because it should have been a temporary effect. Once my body adjusted to the sugar level again, I should have come back to a normal level. Two, the diet I went to was still as healthy and "normal' as it has ever been. Indeed, my diet and sugar intake during the first TUCDA test was worse than it was during the second. So I highly doubt it was a factor. Not unless you can convince me that grass fed meat, fruit, vegetables, and other non-processed foods are a problem with PD.

I have more to say (I've started an exercise program), but I think it will be better to put that in a separate post so this one doesn't get too unfocused. I should have more time Saturday for that.

Bottom line from all my test: TUCDA, in my case, did give me symptom benefits. Add to that the potential it has to slow the disease down, as the human, clinical trial of it in ALS would indicate, the only thing holding anyone back from trying it for themselves is asking your doctor and finding out it could be a problem for them. There are some conditions this could complicate so one is taking a risk not asking their doctor if it is safe, but most people can tolerate it well even at higher doses than what I've taken based on studies.

As I've noted before, I'm not advocating any one person use it, nor am I prescribing it for anyone. Take it if you decide it is right for you, under the guidance of your doctor who is qualified to tell you whether you have any issues this could negatively affect.

All I've done in these last few posts is document my experience in using it and reported what happened. It is not a cure, but it obviously has some benefits for PD patients that are worth investigating and verifying whether or not it can be used for that purpose on a wider basis and prescribed by doctors.

Thanks for your patience and following me on this journey. I'll attempt to tell you about my adventures this past week soon, hopefully Saturday or Sunday.

Until then, be well.

Monday, February 9, 2015

Tauroursodeoxycholic Acid - Round 2: Day 4.5

My bottle of TUDCA arrived Wednesday as expected. Started taking it that evening at the dosage I mentioned before: 5 250 mg pills through the day for 1250 mg/day. At the point I'm typing this, I've been taking it for 4.5 days.

Summary


TUDCA is improving the scores, but not as quickly or dramatically as before. But there is a factor to consider as to why that might be, explained below. But the fact it has affected the same symptoms positively is a further indication that TUDCA was the cause of the previous symptom improvements.

Now, onto the updated scores.

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


Restarting TUDCA: Day 4.5



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
Day 4.5 on TUDCA: 8

As before, I noticed on day 2 some improvement in my ability to hit low notes with consistency and volume. This Sunday while singing bass notes, it confirmed it was significantly better than it was last Sunday. Notes last Sunday that sounded like a weak radio cutting out now stayed pretty strong. I'm not jumping it back to a full 10 yet because I don't think it is quite as solid as it was before.

Cogwheel motion

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 8
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5
Day 4.5 on TUDCA:7

Unlike before, I didn't see a huge improvement here, but there is some.  The most telling progress was in shampooing my hair. The left hand was more able to keep up with the right hand than it did last Sunday morning, but still wasn't quite as smooth or perfectly matching the motions of my right hand as it was by this point the first time around.

Typing speed and ease

Pre-Azilect: 4
Post-Azilect: 6
With TUDCA: 8
Week 1 off TUDCA: 7
Week 2 off TUDCA: 6
Day 4.5 on TUDCA: 7

This one is a bit spotty at this moment. Earlier this week, I started having pretty strong dystonia (stiffness) in my left arm and fingers, so that several times I had to shift to two-fingered typing to write anything. It seemed worse than it has been in some time, close to how it felt about mid-week when I went off the Sinemet for a week last November. Since restarting the TUDCA, there have been increased bouts of improved typing, but most nights still had a lot of dystonia that made typing difficult. As a matter of fact, I'd say typing right now is about the best night I've had in that regard since restarting TUDCA. So my 7 is for how I'm doing right now, 4.5 days after starting. If I'd been filling out this form last night, I probably would have kept it at a 6. If I continue to see more nights like this through this next week, I'll likely bump this score on up to an 8 again.

But obviously something is going on with my body symptoms this week before restarting TUDCA, which seems to have put the score into a bigger deficit than I recorded last Sunday. Indeed, I would say if I were to score this on Wed, I'd say it was at a 4. In light of that, the jump to a 7 is more significant than the numbers would indicate when compared to last Sunday.

Dystonia

Pre-Azilect: 4
Post-Azilect:5
With TUDCA: 8
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5
Day 4.5 on TUDCA: 6

As with typing speed, it was in a deficit since last Sunday, around a 3-4 rating. So this is some improvement, but I'm certainly not as well off as I was the first time by this point. Even now, I'm feeling a need to stretch my left arm thanks to the stiff feeling in my arm. That said, it is better than last week.

Tremors in left hand

Pre-Azilect: 3
Post-Azilect: 5
With TUDCA: 9
Week 1 off TUDCA: 7
Week 2 off TUDCA: 5
Day 4.5 on TUDCA: 6

For the same reasons, my tremors have only slightly improved at this point from last week. There are periods when I don't have much, and other points when it is present. On Wednesday when I restarted TUDCA, I'd rate them a 4. Maybe 3.5.

Toe-curling

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 7
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5.5
Day 4.5 on TUDCA: 6

I've not noticed it as much in the last couple of days, so some improvement. If it keeps going, should rank higher next week.

Conclusions


Though the increases are not as dramatic as they were the last time, overall the PD symptoms have improved in the last 4 days taking TUDCA again.  Given the continued downward slide lower than were I was when the Azilect benefits kicked in--noted in "Post-Azilect" scores--it is obvious the gains made in the first 4 days are a little more dramatic than the above scores might indicate. It is like TUDCA first had to slow the freight train down before turning it around.

It will be interesting to note by next week is how many of my symptom scores have returned to equal or near-equal what they were the first time. Or will they max out at a lower level?

I think the answer to that depends on why my symptoms were worse for the days right before restarting TUDCA. I have three likely theories as to why that happened.

1. In the 2.5 weeks off TUDCA, my PD progressed at a fairly rapid rate. The wearing-off of TUDCA allowed that to manifest itself in symptom scores closer to pre-Azilect than post-Azilect. If true, I may not see symptom scores return to previous levels.

2. In the month since I started the first round with TUDCA, the Azilect has gradually become less effective. Going off the TUDCA revealed that loss during the 2.5 weeks before starting again. If so, I'd expect the symptom scores to return closer this coming week to what they were the first time around.

3. A longer shot, but for the first 2 weeks off TUDCA, my wife and I started the DASH diet plan for weight loss. The plan cuts out all sugar, including fruit, for the first two weeks. Then in the weeks following, fruit and grains are added in. It could be at the beginning of this past week adding those things in adversely affected my symptoms, as sugar is known to be a cause of inflammation. Especially if your body has adjusted to getting very little of it. My body may not have responded quick enough to the reintroduction of those foods to compensate, having been "put to sleep" by inactivity. If that is the case, I'd expect my body to adjust and those scores get up to where they were before.

4. A mixture of some or all of the above.

My hunch is it is primarily #2. #1 might have played into it, but I've not seen to date that rapid of a rate of symptom decline or progression of the disease since starting this journey. That said, PD is an unpredictable animal. I could progress rapidly for a month or two, then maintain those levels for the next 5 years. You just don't know what it is going to do. So I can't rule it out, but it seems unlikely. Especially in light of not having seen other symptoms not being tracked here not get significantly worse during that same period. For instance, no return of drooling or constipation, nor loss of mental abilities.

The coming week should give more insight to how TUDCA will do this time.

Next Monday I'll be seeing my neurologist again. He's already prescribed for my Azilect to be raised from 0.5 mg/day to 1 mg/day. I've not started that dose yet and don't plan to at least until I know the new pills are here. But even then I'll probably wait until my doctor visit.

On one hand, I expect the Azilect increase to help with my symptoms since it did the first time. On the other, I know it will increase my dyskinesia symptoms and I'm not looking forward to that. Though they are no where near as bad as Michael J. Fox's, I'm hoping the Doc will be able to help me minimize that.

So it may be TUDCA has just this one more week to do its thing before I throw more variables into the mix and muddy the waters.

Until next week.

Monday, February 2, 2015

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!