Today I doubled the amount I took. Took 2 250 mg pills at 3 pm and another 2 around 9:30-10 pm for a total of 1200 mg today.
In one of the studies I pointed to, they gave 3 dose levels. 15 mg/kg, 30 mg/kg, and 50 mg/kg of a person's weight. It indicated it was well tolerated at all three levels. For me, I weigh around 77 kg, that would translate into 1155 mg, 2310 mg, and 3850 mg respectively. So you can see I'm barely over the minimum dose given to people in that study.
That said, I'm not planning on raising it in the near future. This should be enough that I should see some difference if it is going to make one on symptoms.
Saturday's experience:
Side-effects: none noticed
Symptom changes: nothing noticeable yet that I can attribute to TUDCA. I did have times of no tremors, but I've experienced that before since taking Azilect. I also experienced some tremors. I should add that I would have expected more tremors than I did get when drinking coffee. I didn't get a lot, maybe half a cup, but that always seems to increase my tremors more when I do. I didn't notice any substantial increase in my tremors from drinking coffee. So that is perhaps something. But nothing I can lay at the feet of taking TUDCA yet.
There were some minor changes, but not enough for me to say it is a change as opposed to the normal ups and downs of my symptoms. Except for perhaps one small item that I noticed that could indicate something.
I mentioned my cogwheel symptom. I tend to notice that upon rubbing my wife's back before sending her off to la-la land. Due to the angle, I use my left hand for that. Normally, any rubbing isn't smooth or even. Tonight it did seem smoother and more normal. We'll see if that keeps up.
Sunday morning will be a good test of any progress. That's when I'm standing and singing/chanting for around 2.5 - 3 hours. Azilect has helped with that a lot, we'll see if it is even better or about the same. If it can help the toe curling and leg issues that make standing for that long uncomfortable, that would be a blessing.
We'll see what day 3 will bring.
Sunday, January 4, 2015
Saturday, January 3, 2015
Day 1: Tauroursodeoxycholic Acid
I mentioned last time the experiment I'm going to do with TUDCA. The full name the abbreviation represents is in the title. Quite a mouthful. That's why I just use the abbreviation.
I received my bottle of it in the mail Friday, and as of writing this, have taken two doses, one 250mg pill around 2 pm, and one 250mg pill around 8 pm.
Before I get to any results thus far, I'll disclose what I'm currently taking and what my remaining symptoms are by which I'm gaging whether this will help me symptomatically or not. That, however would be only one reason to take it.
Currently, I'm taking 25/100mg of carbidopa/levadopa (generic Sinemet) 3 times a day. I've been taking that dose since January 2014. That helped symptoms significantly, but not completely. I still had considerable stiffness and pain in my left arm, and stiffness in my left leg. Tremors were still visible and when stress is applied, all those symptoms were magnified. But still, as I discovered in my one-week Sinemet holiday the first week of November, I would have been much more stiff and painful without it, to the point typing would be practically out of the question. By the end of that week I'd gone to a two-fingered typing approach, which was much slower but possible. Before I started taking my Sinemet again, even that was becoming too much of a chore.
About mid-November I started taking 0.5mg of Azilect. While sometimes it doesn't do a lot for symptoms, in my case it did significantly. Noticeably, my tremors are minimal (except apparently when I drink coffee) as is the stiffness in my arm and fingers. I'm not noticing any tremors in my right hand even though before I had developed a slight tremor in it as the disease progressed to my right side. I have periods of the day when it is better and worse, probably depending on my Sinemet schedule, which thanks to all the holidays has been messed up a good bit. Will get messed up again as we prepare for a trip next weekend. As mentioned last time, I'm now partway into 6 weeks of taking Azilect. Maximum benefit is supposed to be achieved within 4 to 8 weeks. So I'm in the later part of that range. In the last two weeks, I've not noticed any new improvement in symptoms, leading me to believe I've pretty much reached the maximum symptomatic benefit. If it is still improving, it is in very subtle ways I'm not able to detect.
I'm also taking a slew of supplements, mostly antioxidants, anti-inflammatory, and cognitive support. I won't bore you listing them all out. Mainly to say that I've not changed that in the last few weeks aside from adding in a probotic to the list to improve gut functioning. Interestingly enough, ran across a study indicating that PD patients tended to be missing a whole family of gut bacteria, so adding that was a good move. All that to say, however, that I've not recently added or changed any of my supplements that might account for any new changes upon taking TUCDA. Indeed, I also received a bottle of magnesium taurate, which will add tauramine to my body, something typically missing in PD brains compared to normal ones. But I'm holding off on it for at least three days to make sure any immediate changes can be linked more closely with adding in the TUDCA.
The only question mark is that it is possible the Azilect isn't finished, and could inject a new bursts of benefits coincidentally at the same time as the TUCDA is taken. Not very likely, but is possible.
My current symptoms not sucuming to my current medication and supplement routine are a mixture of remaining PD symptoms and minor dyskinesia symptoms. Dyskinesia is, by way of reminder, lack of motor control as a side-effect of using Levadopa in the body, which is mostly what Sinemet is. The more of it you take and the longer you take it, the worse those symptoms get.
PD Symptoms left:
Dyskinesia symptoms:
One symptom I've noticed of late, so I suspect it is a dyskinesia symptom, is embouchure tightening. Seems to happen mostly while I'm working to clean houses, I notice my lips drawing into a tight pull enough that it becomes uncomfortable. I have to keep forcing my mouth to relax.
Another symptom that's been unchanging through meds so far is balance. I've not fallen, but I feel decidedly more unsteady than I used to be. I'd say I've been that way through most of 2014, but it hasn't seemed to have gotten worse yet either. Just there, hanging on the edge. I can still balance on one foot, though. Just not as confidently.
What I'm not having any problem with to speak of, that I was before, is drooling and fuzzy thinking. Which is good.
That's where I stand, and what symptoms I'll be watching to see if they improve.
For day 1 on TUCDA, I had the following results.
Side-effects: Nothing I can detect.
Symptom changes: Nothing I can detect. Tremors and stiffness and all other symptoms appear unchanged.
Based on the lack of any nausea (the most common side-effect of this substance) and what I've read is a minimum effective dose, I'm going to double them for Saturday so I get a whole gram of the med in one day.
Some studies I've read upon which I'm basing the use of this drug as far as safety and effectiveness:
Efficacy and Tolerability of Tauroursodeoxycholic Acid in Amyotrophic Lateral Sclerosis
Safety, Tolerability, and Cerebrospinal Fluid Penetration of Ursodeoxycholic Acid in Patients With Amyotrophic Lateral Sclerosis
Oral Solubilized Ursodeoxycholic Acid Therapy in Amyotrophic Lateral Sclerosis: A Randomized Cross-Over Trial
You'll notice that most all the human clinical trials have been done in relation to ALS, not PD. While the parts of the brain that are dying in each disease is different, what this does show is the results in pre-clinical trials on cells and animals, does indeed translate over to human subjects using the same functional approach, halting/slowing cell death. It also shows the drug is safe to use. There are cases it can be a problem, usually involving diseased livers or gall bladders, but otherwise tolerated by most people.
What we don't know is whether it will prevent PD brain cell death as well as it prevents brain and nerve neuron death in ALS. If it does, and there doesn't seem to be any reason it won't, it would be the first substance to actually slow or stop the progression of PD. So even minus any symptomatic improvement, it may be wise to continue to take this for the possibility of helping me not to get any worse in the foreseeable future.
This was a long one, due to needing to spell out the backstory for disclosure. Future updates should just be what I'm experiencing with the drug. Until then.
I received my bottle of it in the mail Friday, and as of writing this, have taken two doses, one 250mg pill around 2 pm, and one 250mg pill around 8 pm.
Before I get to any results thus far, I'll disclose what I'm currently taking and what my remaining symptoms are by which I'm gaging whether this will help me symptomatically or not. That, however would be only one reason to take it.
Currently, I'm taking 25/100mg of carbidopa/levadopa (generic Sinemet) 3 times a day. I've been taking that dose since January 2014. That helped symptoms significantly, but not completely. I still had considerable stiffness and pain in my left arm, and stiffness in my left leg. Tremors were still visible and when stress is applied, all those symptoms were magnified. But still, as I discovered in my one-week Sinemet holiday the first week of November, I would have been much more stiff and painful without it, to the point typing would be practically out of the question. By the end of that week I'd gone to a two-fingered typing approach, which was much slower but possible. Before I started taking my Sinemet again, even that was becoming too much of a chore.
About mid-November I started taking 0.5mg of Azilect. While sometimes it doesn't do a lot for symptoms, in my case it did significantly. Noticeably, my tremors are minimal (except apparently when I drink coffee) as is the stiffness in my arm and fingers. I'm not noticing any tremors in my right hand even though before I had developed a slight tremor in it as the disease progressed to my right side. I have periods of the day when it is better and worse, probably depending on my Sinemet schedule, which thanks to all the holidays has been messed up a good bit. Will get messed up again as we prepare for a trip next weekend. As mentioned last time, I'm now partway into 6 weeks of taking Azilect. Maximum benefit is supposed to be achieved within 4 to 8 weeks. So I'm in the later part of that range. In the last two weeks, I've not noticed any new improvement in symptoms, leading me to believe I've pretty much reached the maximum symptomatic benefit. If it is still improving, it is in very subtle ways I'm not able to detect.
I'm also taking a slew of supplements, mostly antioxidants, anti-inflammatory, and cognitive support. I won't bore you listing them all out. Mainly to say that I've not changed that in the last few weeks aside from adding in a probotic to the list to improve gut functioning. Interestingly enough, ran across a study indicating that PD patients tended to be missing a whole family of gut bacteria, so adding that was a good move. All that to say, however, that I've not recently added or changed any of my supplements that might account for any new changes upon taking TUCDA. Indeed, I also received a bottle of magnesium taurate, which will add tauramine to my body, something typically missing in PD brains compared to normal ones. But I'm holding off on it for at least three days to make sure any immediate changes can be linked more closely with adding in the TUDCA.
The only question mark is that it is possible the Azilect isn't finished, and could inject a new bursts of benefits coincidentally at the same time as the TUCDA is taken. Not very likely, but is possible.
My current symptoms not sucuming to my current medication and supplement routine are a mixture of remaining PD symptoms and minor dyskinesia symptoms. Dyskinesia is, by way of reminder, lack of motor control as a side-effect of using Levadopa in the body, which is mostly what Sinemet is. The more of it you take and the longer you take it, the worse those symptoms get.
PD Symptoms left:
- Minor tremors in left fingers, gets worse under stress and can tremor the whole hand/arm.
- Stiffness in left arm and leg. Currently not much pain with it. On a scale of 1 to 10, 10 being bad pain, I'd say it is around a 2 in my left arm.
- Due to stiffness in my left arm and leg, my gait is affected. I walk differently. In this, it seems the Sinemet nor Azilect have had much of an affect on.
- Sometimes when I swallow, only noticed when swallowing pills, my throat won't work right and I'll get water down my wind pipe. Usually happens at least once when taking my array of supplements in the morning and night.
- Less energy than I used to have. Not always as bad, but there are times I seem to run out and my movements get slow and draggy.
- My left toes want to curl under. Most noticeable when I'm standing or working on my feet. If I'm on them for 3 hours or more, it can hurt as the tips of some of my toes are constantly pushing down on the floor. This is also a symptom which Sinemet only helped a bit and Azilect hasn't seemed to do anything for me.
- Minor constipation. Mostly kept in check with my magnesium supplement. Before that, it tended to be the battle of the bulge, if you get my drift.
- Some "cogwheel" difficulties with my left hand. Associated with Bradykinesia (slowness of movement), it refers to lack of smoothness in hand motion, as if when going in a circle your hand acts like a cogwheel, creating jerky movements slowly. The Sinement and Azilect has helped that enough that I was able to use my left hand to cut my hair with the Flowbie last time, when prior to Azilect it was too difficult. But it is still present, just better than its been in many a month.
Dyskinesia symptoms:
- Slight head movement, like something is pulling my head down at times.
- Some antsiness in my left leg, such that if I stand for more than a couple hours, it wants to stop holding me up. So it wants to wiggle around.
- My dyskinesia like I had before, doesn't include rocking back and forth while standing this time. Hasn't become that bad yet.
One symptom I've noticed of late, so I suspect it is a dyskinesia symptom, is embouchure tightening. Seems to happen mostly while I'm working to clean houses, I notice my lips drawing into a tight pull enough that it becomes uncomfortable. I have to keep forcing my mouth to relax.
Another symptom that's been unchanging through meds so far is balance. I've not fallen, but I feel decidedly more unsteady than I used to be. I'd say I've been that way through most of 2014, but it hasn't seemed to have gotten worse yet either. Just there, hanging on the edge. I can still balance on one foot, though. Just not as confidently.
What I'm not having any problem with to speak of, that I was before, is drooling and fuzzy thinking. Which is good.
That's where I stand, and what symptoms I'll be watching to see if they improve.
For day 1 on TUCDA, I had the following results.
Side-effects: Nothing I can detect.
Symptom changes: Nothing I can detect. Tremors and stiffness and all other symptoms appear unchanged.
Based on the lack of any nausea (the most common side-effect of this substance) and what I've read is a minimum effective dose, I'm going to double them for Saturday so I get a whole gram of the med in one day.
Some studies I've read upon which I'm basing the use of this drug as far as safety and effectiveness:
Efficacy and Tolerability of Tauroursodeoxycholic Acid in Amyotrophic Lateral Sclerosis
Safety, Tolerability, and Cerebrospinal Fluid Penetration of Ursodeoxycholic Acid in Patients With Amyotrophic Lateral Sclerosis
Oral Solubilized Ursodeoxycholic Acid Therapy in Amyotrophic Lateral Sclerosis: A Randomized Cross-Over Trial
You'll notice that most all the human clinical trials have been done in relation to ALS, not PD. While the parts of the brain that are dying in each disease is different, what this does show is the results in pre-clinical trials on cells and animals, does indeed translate over to human subjects using the same functional approach, halting/slowing cell death. It also shows the drug is safe to use. There are cases it can be a problem, usually involving diseased livers or gall bladders, but otherwise tolerated by most people.
What we don't know is whether it will prevent PD brain cell death as well as it prevents brain and nerve neuron death in ALS. If it does, and there doesn't seem to be any reason it won't, it would be the first substance to actually slow or stop the progression of PD. So even minus any symptomatic improvement, it may be wise to continue to take this for the possibility of helping me not to get any worse in the foreseeable future.
This was a long one, due to needing to spell out the backstory for disclosure. Future updates should just be what I'm experiencing with the drug. Until then.
Thursday, January 1, 2015
New Year, New Experiment
Happy New Year!
First, update on my Azilect. Have been taking it now for about 5 weeks. Full effect is suppose to be accomplished between 4 to 8 weeks. So I'm pretty much in the middle of that range. The last couple of weeks I've not noticed any signficant change in symptoms, so I think at least for symptoms, I'm at my maxium benefit.
The good news is that its effect upon symptoms has been very good. I'm currently feeling the most "normal" I've felt siince my PD began. Not that symptoms have gone totally away, but they've been siginficantly improved, including my typing speed is much better, though there are still times it doesn't work as well. But the stiffness in my left arm, the pain, is pretty much at a minimum, and my left hand tremor is slight. Additionally, during times of stress, like singing for 3 hours at church on Sunday mornings, is noticably easier, less stiffness and pain and tremors.
The only downside has been the dyskenesia side-effect never went away, if anything has increased slightly. Still not as bad as it was when my Sinemet was doubled, and still manageable, but has stayed there. Slight involunbtary movement in my head and left leg gets antsy and doesn't want to hold me up while standing for a prolonged period of time. The one good bit of news on that front is the involuntary multi-click on the mouse with my right hand that I attributed to my dyskenesia. I got a new mouse for Christmas from my son, Jeremy. So far, it has solved my multi-click issue. I guess my previous mouse was too sensitive.
So the improvement from using Azilect has been a good Christmas present. At the beginning of this new year, I'm going to try something new.
On a Parkinson's forum I'm on, there has been a couple of people promoting the benefits of UDCA, a type of bile acid naturally produced in our bodies (around 5% of total) that is used primarily by doctors to dissolve a certain type of gall stones. Some studies on cells that have a cell death similar to what happens in Parkinson's brains has shown to have slowed, stopped cell death, even revived dying cells that were dying. So it has been postulated that the drug could potentially slow or halt the progression of PD and help in relieving symptoms. The two guys who have tried it noticed immediate improvement in symptoms the first day taking it, which seems hard to believe, but they swear by it.
While UCDA is a prescribed substance, another form of it that has taurine added to it can be bought over the counter, known as TUCDA. After determining that the risk it is unsafe for me to take was very small, I decided to give it a try and see what it does. So I ordered some from Amazon. It should have already arrived by this point, but should come in tomorrow. So in the next day or two, I'll be able to tell you whether it had a similar effect on me. Stay tuned!
And enjoy your New Year's day, and the 8th day of Christmas. Now, what did I do with those eight maids that are supposed to be milking these cows?
Friday, December 5, 2014
Azilect Results
Last time I indicated that my new neurologist had prescribed Azilect, a MAO-B inhibitor, to add to my Sinemet medication. I also mentioned, due to the high cost of the medication (the $600/month bill I mentioned last time was for the 1 mg pill, I was prescribed the 0.5 mg pill, so more like $300/month), I was applying for patient assistance from the company that makes the medication, Teva.
The good news is I was approved and received the medication. As of yesterday, Thursday, I will have been on it for 2 weeks. According to the documentation from the company, I can expect to see maximum results within 4 to 8 weeks. One person on my PD support group reported noticing benefits at 2 weeks. So I thought this would be a good time to give a preliminary report on how it is going.
First, I'll mention side-effects. If side effects are bad, it can offset the benefits of the med.. Like the dopamine agonist I was on earlier this year made me feel drowsy all the time. Not really sleepy, but like there was an edge of mental dullness all the time.
Thankfully, the side-effects have been minimal. For the first week, I experienced a slight stomach discomfort around 1 to 3 hours after taking it. One common side-effect is nausea. My discomfort was minimal, and I never felt nauseous. It didn't last long, and didn't really bother me. I just noticed it. The second week, I've not even noticed any discomfort. So that's good. Some people have to give it up because it is too much for them.
A second side effect is some increase in dyskenesia, uncontrolled movements brought on by too much or prolonged L-dopa useage as I get in Sinemet. You'll recall when my previous neurologist doubled my Sinemet dose, it produced some of those effects: rocking motion while standing, weak/antsy left leg, head movement, and my right-hand doing multiple mouse clicks with one click (that did end up being due to the increase in Sinemet, it just didn't disappear as quickly when I went back to my previous dose like the other symptoms).
Some of those have returned, but not as severe as before. At least, so far, it is manageable, and probably not as noticeable by others. My wife hasn't commented on noticing my head moving like before, for instance, though I can feel it moving some at times.
Probably the most annoying side-effect has been related to the dyskenesia. At least I think it is. I didn't experience this last time, so I'm not sure. But when I try to go to sleep, my left arm starts wanting to tremor/vibrate. To the point I was having trouble falling asleep. PD tremors go away while you're sleeping, so once asleep they usually don't wake you up. But until this point, they would calm down enough as I was drifting off to sleep that I didn't have trouble falling asleep. Now, upon taking this medication, I would start to fall asleep, but then my mind would wake up a bit, and as a result the tremors would start up. A couple of nights I had trouble getting to sleep, and a few nights I would wake up after 3-4 hours of sleep, and then not be able to get back to sleep because of it.
My main tactic was to stretch and rub my arm for a bit. That would usually calm it down for a few seconds, hopefully enough time for me to drift off to sleep. What I found most helpful was saying the Jesus prayer as I breathed in and out, "Lord Jesus Christ, Son of God, have mercy on me, a sinner." It not only helped to calm me down, but gave my mind something else to focus on to distract it from thinking about the tremors.
The second week was better in that regard too. I've not had nearly as much trouble getting to sleep, though sometimes I do notice my arm being more tremory as I'm falling asleep. I'm also not waking up part way into the night anymore.
So all in all, the side-effects haven't been too bad, and mostly have gone away after the first week.
So have I noticed any improvements yet? Some. It hasn't been drastic, but a couple of things I've noticed have improved.
One, I seem to have more periods of time that typing is easier. Like right now, my left arm is stiff and hurting a bit as I type. That seemed to be the norm with just the Sinemet alone. But now I have more times when it isn't as bad, and my speed picks up a good bit. Occasionally it almost feels normal. Hopefully in the next few weeks, that will improve even more.
Two, the tooth brushing test. This year, I've noticed my right arm being affected by PD more. It currently tremors slightly, but hasn't yet felt a lot of stiffness nor had trouble typing, thankfully. Obviously it will get there eventually. But the one area I've noticed the most with my right arm is in brushing my teeth. It feels like my hand starts running away with the brush stokes, like a runaway train. Especially, for some reason, brushing my right teeth. In these last two weeks, I've noticed some control returning to my brushing.
So it is helping. In the next 2-6 weeks, I should know more fully how beneficial it will be. Good news so far. And on top of that, I get the med for free as long as I qualify for their program. Can't beat that. I'll try and update you on that in a few weeks, probably after Christmas.
Before then, however, I want to post about my drug holiday I did three weeks ago, and where my symptoms are at now. Then we'll see what 2015 has in store for me. Until then, Alonzo!
The good news is I was approved and received the medication. As of yesterday, Thursday, I will have been on it for 2 weeks. According to the documentation from the company, I can expect to see maximum results within 4 to 8 weeks. One person on my PD support group reported noticing benefits at 2 weeks. So I thought this would be a good time to give a preliminary report on how it is going.
First, I'll mention side-effects. If side effects are bad, it can offset the benefits of the med.. Like the dopamine agonist I was on earlier this year made me feel drowsy all the time. Not really sleepy, but like there was an edge of mental dullness all the time.
Thankfully, the side-effects have been minimal. For the first week, I experienced a slight stomach discomfort around 1 to 3 hours after taking it. One common side-effect is nausea. My discomfort was minimal, and I never felt nauseous. It didn't last long, and didn't really bother me. I just noticed it. The second week, I've not even noticed any discomfort. So that's good. Some people have to give it up because it is too much for them.
A second side effect is some increase in dyskenesia, uncontrolled movements brought on by too much or prolonged L-dopa useage as I get in Sinemet. You'll recall when my previous neurologist doubled my Sinemet dose, it produced some of those effects: rocking motion while standing, weak/antsy left leg, head movement, and my right-hand doing multiple mouse clicks with one click (that did end up being due to the increase in Sinemet, it just didn't disappear as quickly when I went back to my previous dose like the other symptoms).
Some of those have returned, but not as severe as before. At least, so far, it is manageable, and probably not as noticeable by others. My wife hasn't commented on noticing my head moving like before, for instance, though I can feel it moving some at times.
Probably the most annoying side-effect has been related to the dyskenesia. At least I think it is. I didn't experience this last time, so I'm not sure. But when I try to go to sleep, my left arm starts wanting to tremor/vibrate. To the point I was having trouble falling asleep. PD tremors go away while you're sleeping, so once asleep they usually don't wake you up. But until this point, they would calm down enough as I was drifting off to sleep that I didn't have trouble falling asleep. Now, upon taking this medication, I would start to fall asleep, but then my mind would wake up a bit, and as a result the tremors would start up. A couple of nights I had trouble getting to sleep, and a few nights I would wake up after 3-4 hours of sleep, and then not be able to get back to sleep because of it.
My main tactic was to stretch and rub my arm for a bit. That would usually calm it down for a few seconds, hopefully enough time for me to drift off to sleep. What I found most helpful was saying the Jesus prayer as I breathed in and out, "Lord Jesus Christ, Son of God, have mercy on me, a sinner." It not only helped to calm me down, but gave my mind something else to focus on to distract it from thinking about the tremors.
The second week was better in that regard too. I've not had nearly as much trouble getting to sleep, though sometimes I do notice my arm being more tremory as I'm falling asleep. I'm also not waking up part way into the night anymore.
So all in all, the side-effects haven't been too bad, and mostly have gone away after the first week.
So have I noticed any improvements yet? Some. It hasn't been drastic, but a couple of things I've noticed have improved.
One, I seem to have more periods of time that typing is easier. Like right now, my left arm is stiff and hurting a bit as I type. That seemed to be the norm with just the Sinemet alone. But now I have more times when it isn't as bad, and my speed picks up a good bit. Occasionally it almost feels normal. Hopefully in the next few weeks, that will improve even more.
Two, the tooth brushing test. This year, I've noticed my right arm being affected by PD more. It currently tremors slightly, but hasn't yet felt a lot of stiffness nor had trouble typing, thankfully. Obviously it will get there eventually. But the one area I've noticed the most with my right arm is in brushing my teeth. It feels like my hand starts running away with the brush stokes, like a runaway train. Especially, for some reason, brushing my right teeth. In these last two weeks, I've noticed some control returning to my brushing.
So it is helping. In the next 2-6 weeks, I should know more fully how beneficial it will be. Good news so far. And on top of that, I get the med for free as long as I qualify for their program. Can't beat that. I'll try and update you on that in a few weeks, probably after Christmas.
Before then, however, I want to post about my drug holiday I did three weeks ago, and where my symptoms are at now. Then we'll see what 2015 has in store for me. Until then, Alonzo!
Wednesday, November 12, 2014
New Doc Update
I saw a new neurologist Monday, here in Marble Falls. Bottom line, I'm happy with him. Not only is he in town, so no more 2 hour drives each way to Temple, but he has dealt with this for a long time, was knowledgeable on recent developments, did more tests, and is considering more options than my previous neurologist.
By way of example, my previous neurologist didn't have MAO-B inhibitors on her "go to" medications. She said because she didn't feel the benefits to side-effect ratio was good. She pointed to diet restrictions as evidence of a difficulty using them.
MAO inhibitors essentially inhibit the production of an enzyme. MAO-A inhibitors are used in psychotic diseases and have significant diet restrictions to avoid the chemical tyrosine, which can cause hypertensive reactions among other issues when MAO-A is present at the same time. MAO-B inhibitors, however, don't have those restrictions on diet. But when they came out, the FDA automatically gave them the same restrictions as MAO-A inhibitors. Later, as evidence was accumulated that the B version didn't have the same risks as the A one, the FDA relaxed the dietary requirements on MAO-B inhibitors. By inhibiting the MAO-B enzyme, which breaks down dopamine in the body to get rid of older dopamine molecules, it allows the dopamine in your system to hang around longer. That makes any dopamine produced by your brain cells still alive to work longer, as well as any taken in the form of Sinemet--the main drug used in PD.
One MAO-B inhibitor has been around for a while. At one point it was thought to have neuro-protective action, but was not proven to be true in the end. However, 10 years ago a new form came out with the brand name Azilect. It has shown evidence of slowing down the progression of PD. The first med to do so. All others treat symptoms only.
There is your PD lesson for the day. All that to point out that my previous neurologist didn't appear to know about MAO-B inhibitors not having the same diet restrictions as the A version. It was obvious she wasn't going to prescribe any of those. I thought we should at least give them a try and see, but she didn't seem to be open to doing that.
Not so with the new neurologist. He first went through a list of meds and asked me whether I'd taken any of them. The list was longer than I expected, and I could say no to them all because the only ones I'd had was Sinemet and a dopamine agonist. Then he ended that by giving me a history of PD meds, like what I'd read and given above, and ended that he'd like to prescribe Azilect for me. I didn't even have to bring any of it up. And through his presentation he described the diet restriction issue that I've detailed above.
The result being he has been dealing with this since the 60s, knows his stuff, and is open to finding the best med mix among a wide array of options instead of the narrow range of the previous neurologist. And he is not only willing to prescribe a MAO-B inhibitor, he brought it up as the first option to try. So I'm feeling a lot more confident that he can help me.
The down side is that Azilect is still under patent, which expires in Feb. 2017. Until then, there is no generic equivalent. Which means the medication is expensive. Looking on line, a 30 day supply retails just over $600, and with discounts will go anywhere from the upper $400s to the lower $500s. IOW, a month's supply would be more than our car payment.
Upon telling him I didn't have insurance to cover that, he pointed me to the company who has patient assistance programs. After searching, I found the qualifications and form to submit, which based on their info I should qualify for, I can get it for free. So I've filled out the form and sent it to the neurologist, he's filled in his part. I'll pick it up today and fax it into the company with my proof of income. Not sure how fast they'll process it and I'll get it if approved, but I'm hoping I'll have it by the end of next week. We'll see.
Aside from that, he confirmed the previous neurologist's diagnosis that I have PD. He said something along the lines of me fitting the standard characteristics, so for him, there is no doubt that this is PD, and not some other disease that mimics PD symptoms.
So it appears I'll get to try out this med and see how much it helps. I'll keep you updated. I'm going back to see him again in February.
Until I have more info . . . bye.
By way of example, my previous neurologist didn't have MAO-B inhibitors on her "go to" medications. She said because she didn't feel the benefits to side-effect ratio was good. She pointed to diet restrictions as evidence of a difficulty using them.
MAO inhibitors essentially inhibit the production of an enzyme. MAO-A inhibitors are used in psychotic diseases and have significant diet restrictions to avoid the chemical tyrosine, which can cause hypertensive reactions among other issues when MAO-A is present at the same time. MAO-B inhibitors, however, don't have those restrictions on diet. But when they came out, the FDA automatically gave them the same restrictions as MAO-A inhibitors. Later, as evidence was accumulated that the B version didn't have the same risks as the A one, the FDA relaxed the dietary requirements on MAO-B inhibitors. By inhibiting the MAO-B enzyme, which breaks down dopamine in the body to get rid of older dopamine molecules, it allows the dopamine in your system to hang around longer. That makes any dopamine produced by your brain cells still alive to work longer, as well as any taken in the form of Sinemet--the main drug used in PD.
One MAO-B inhibitor has been around for a while. At one point it was thought to have neuro-protective action, but was not proven to be true in the end. However, 10 years ago a new form came out with the brand name Azilect. It has shown evidence of slowing down the progression of PD. The first med to do so. All others treat symptoms only.
There is your PD lesson for the day. All that to point out that my previous neurologist didn't appear to know about MAO-B inhibitors not having the same diet restrictions as the A version. It was obvious she wasn't going to prescribe any of those. I thought we should at least give them a try and see, but she didn't seem to be open to doing that.
Not so with the new neurologist. He first went through a list of meds and asked me whether I'd taken any of them. The list was longer than I expected, and I could say no to them all because the only ones I'd had was Sinemet and a dopamine agonist. Then he ended that by giving me a history of PD meds, like what I'd read and given above, and ended that he'd like to prescribe Azilect for me. I didn't even have to bring any of it up. And through his presentation he described the diet restriction issue that I've detailed above.
The result being he has been dealing with this since the 60s, knows his stuff, and is open to finding the best med mix among a wide array of options instead of the narrow range of the previous neurologist. And he is not only willing to prescribe a MAO-B inhibitor, he brought it up as the first option to try. So I'm feeling a lot more confident that he can help me.
The down side is that Azilect is still under patent, which expires in Feb. 2017. Until then, there is no generic equivalent. Which means the medication is expensive. Looking on line, a 30 day supply retails just over $600, and with discounts will go anywhere from the upper $400s to the lower $500s. IOW, a month's supply would be more than our car payment.
Upon telling him I didn't have insurance to cover that, he pointed me to the company who has patient assistance programs. After searching, I found the qualifications and form to submit, which based on their info I should qualify for, I can get it for free. So I've filled out the form and sent it to the neurologist, he's filled in his part. I'll pick it up today and fax it into the company with my proof of income. Not sure how fast they'll process it and I'll get it if approved, but I'm hoping I'll have it by the end of next week. We'll see.
Aside from that, he confirmed the previous neurologist's diagnosis that I have PD. He said something along the lines of me fitting the standard characteristics, so for him, there is no doubt that this is PD, and not some other disease that mimics PD symptoms.
So it appears I'll get to try out this med and see how much it helps. I'll keep you updated. I'm going back to see him again in February.
Until I have more info . . . bye.
Tuesday, October 21, 2014
Medication Change Results
Last time I indicated that my doctor and I believed the increase dosage of Sinemet was causing some side effects. So almost 2 weeks ago, I went back to taking only one pill three times a day. Following are the results.
On my head movement, I don't feel like I'm doing it as much. My wife said she hadn't noticed it much since cutting back. So the increased Sinemet did appear to be causing that.
On my standing issues, both feeling a need to rock back and forth and my restless/weak left leg that protested at holding me up, have fallen away. I stood for 3 hours in church last Sunday. While my feet were tired (normal) and I could feel some toe curling fatigue, it was nothing like its been for the previous 4 weeks. By the end of the service I was putting normal pressure on my left leg without much protest. I realized at times during the service when before it would usually be bad, that I wasn't even thinking about it.
The only thing that hasn't gotten better is the multiple-clicks on the mouse. Maybe a little better, but still there. Like today I clicked in Firefox to open a new tab--I got 3 of them. But I'm learning new shortcut keys, like Ctrl-W closes a tab. So that symptom is due to the progression of PD in my right hand. So far, no difficulties typing with that hand, but I'm sure it is coming.
So most of those did come from the increasing of the Sinemet. They would be considered dyskinesia. Which I thought I'd need to be on Sinemet much longer and at higher doses before I experienced that. I guess not.
I'm sticking with my original dose until I see my new neurologist on Nov. 10th. There are other options, including adding Requip back into the mix, though I'm hoping he'll be open to giving a MAO inhibitor a try first. Until then, putting up with the extra pain and tremors at the lower dose.
That's the scoop for the time being.
On my head movement, I don't feel like I'm doing it as much. My wife said she hadn't noticed it much since cutting back. So the increased Sinemet did appear to be causing that.
On my standing issues, both feeling a need to rock back and forth and my restless/weak left leg that protested at holding me up, have fallen away. I stood for 3 hours in church last Sunday. While my feet were tired (normal) and I could feel some toe curling fatigue, it was nothing like its been for the previous 4 weeks. By the end of the service I was putting normal pressure on my left leg without much protest. I realized at times during the service when before it would usually be bad, that I wasn't even thinking about it.
The only thing that hasn't gotten better is the multiple-clicks on the mouse. Maybe a little better, but still there. Like today I clicked in Firefox to open a new tab--I got 3 of them. But I'm learning new shortcut keys, like Ctrl-W closes a tab. So that symptom is due to the progression of PD in my right hand. So far, no difficulties typing with that hand, but I'm sure it is coming.
So most of those did come from the increasing of the Sinemet. They would be considered dyskinesia. Which I thought I'd need to be on Sinemet much longer and at higher doses before I experienced that. I guess not.
I'm sticking with my original dose until I see my new neurologist on Nov. 10th. There are other options, including adding Requip back into the mix, though I'm hoping he'll be open to giving a MAO inhibitor a try first. Until then, putting up with the extra pain and tremors at the lower dose.
That's the scoop for the time being.
Saturday, October 11, 2014
Medication change
As I last reported back in September 10th, my neurologist increased my Sinemet dose to double what I was taking, since my symptoms had gradually increased. She also seemed a bit puzzled that my current dosage wasn't helping any more than it was. But since it was helping, she figured we could up the dose and see if that got rid of the symptoms better.
It has been just a little over a month, and here is how it has worked.
On the positive side, the increase dosage did help my dystonia (pain stiffness in my left arm and leg) and reduction in tremors. Didn't totally erase it, but did improve it considerably.
However, other symptoms started after increasing the dose. Some I thought was just the progression of PD, but their quick advancement happening right after the dose increase made me wonder if they were more due to side-effects of the medication. Those symptoms include:
1. My head started moving around more. Lenita noticed it, and I could tell. I noticed too at church, standing up, that my whole body wanted to rock back and forth. It felt like dykensia, like what Michael J. Fox has, which is a side-effect from taking Sinemet. But that usually only shows up on higher levels of the medications and after a few years. It shouldn't be happening yet to me.
2. My left leg started feeling antsy and weak. I really noticed this at church.
For those not familiar, we stand through most of our worship. Those that need to can sit, but mostly we stand. Especially me since I'm a reader and start reading and chanting the first service (equivalent to Matins) which takes about an hour and fifteen minutes, then I'm in the choir singing for another 2-2.15 hours for the main service. That's a total of standing and singing for 3 hours every Sunday morning. Been doing this since 1996 without too much problems.
The last three Sundays, my left leg has been giving me problems. I'm noticing it by the time the second service starts, and by the time the homily comes and I get my one chance to sit down, my left leg is feeling all wobbly and weak, and muscles are restless. I made it through the last service only by favoring my right leg. Seems if I take pressure off the left leg, it helps calm it down. But as that gets worse, my right leg will tire out faster too. If it doesn't get better, I may have to start chanting in a chair or something.
This past week, on Wednesday, I noticed the same thing happening as I started cleaning the first house. It gradually got better, though. I think moving helps it, instead of standing in one place like I do on Sunday mornings.
3. This one is the most annoying. You may recall I mentioned earlier this year that my right hand was slightly tremoring and feeling stiff, and if it followed my left hand's progression, I would be having difficulty typing with it by November.
Not too long after upping my dose, I started to have trouble accidentally double and triple clicking the mouse on my computer. For all the world it feels like I just click it once, but it does a multiple click.
One time I clicked on the file manager icon, and it opened up five copies of it. Like, I don't even see how it could have clicked it that many times in the fraction of a second I press on the button. But obviously my pressure on the button isn't constant. I've noticed this too when I'm trying to mark text, and it stops marking it and tries to move it.
When I right-click to bring up a context menu, I have to be aware of any clickable links behind my menu selection, because chances are I'll activate them too. I've accidentally closed more than one program.
I've compensated by lowering the double-click window time, but since the multiple clicks happen so fast, all that's ended up doing is making it hard to intentionally double-click something. Instead, I've learned and used a lot more shortcut keys for functions, and put in shortcut keys to start programs (I had to learn how to do that in Openbox, my Linux desktop control program, not as easy as in Windows).
That said, so far I've not noticed any significant loss of motor function in my right hand. It still types fine and works smoothly, unlike my left. If it's doing that good by November, it will be doing better than my left hand did in its progression. It is just this accidental double-clicking that has started this month. While it could be due to PD progression, it is curious it started about the time I increased my dose.
So this past Wednesday night, I sent a message to my neurologist about the new symptoms. She recommended I go back to the earlier dosage for now. In the next couple of weeks, I should be able to tell if the above symptoms go away, meaning they were due to the medication and not PD itself. Or I may discover that some of them are due to PD progressing as well. Well see.
The down side if the medication is causing these new symptoms is that this medication is the primary one for treating PD. There are others, but tend to only be effective in the earlier stages. Eventually for most PD patients, they end up on high doses of Sinemet despite the dyskenesia symptoms it creates, because the pain of not being on it is worse than the side effects of the medication. That I may be having those symptoms at such a low dose and early stage isn't good news.
I've gone back to my old dosage for a day and a half now. I can feel the stiffness and pain in my arm more, but it is bearable. Hard to tell if the above symptoms have lessened or not. Might notice something this Sunday, but more likely it won't be noticeable until next Sunday, as it takes about a week for the dopamine levels to adjust to the new level in the body.
Next neurology meeting is Nov. 10th, a month away. Plan is to maintain my old dose level for the next month, see how that goes, discuss options with the new doctor, and hopefully come up with a new plan. If in two weeks the above symptoms persist, then it might indicate a progression in the PD itself.
Fun, fun fun. Not. But it is what it is. I figure God has some lessons to teach me through this. One, I'm sure, is to learn how to depend on Him more, and this broken jar of clay, less.
It has been just a little over a month, and here is how it has worked.
On the positive side, the increase dosage did help my dystonia (pain stiffness in my left arm and leg) and reduction in tremors. Didn't totally erase it, but did improve it considerably.
However, other symptoms started after increasing the dose. Some I thought was just the progression of PD, but their quick advancement happening right after the dose increase made me wonder if they were more due to side-effects of the medication. Those symptoms include:
1. My head started moving around more. Lenita noticed it, and I could tell. I noticed too at church, standing up, that my whole body wanted to rock back and forth. It felt like dykensia, like what Michael J. Fox has, which is a side-effect from taking Sinemet. But that usually only shows up on higher levels of the medications and after a few years. It shouldn't be happening yet to me.
2. My left leg started feeling antsy and weak. I really noticed this at church.
For those not familiar, we stand through most of our worship. Those that need to can sit, but mostly we stand. Especially me since I'm a reader and start reading and chanting the first service (equivalent to Matins) which takes about an hour and fifteen minutes, then I'm in the choir singing for another 2-2.15 hours for the main service. That's a total of standing and singing for 3 hours every Sunday morning. Been doing this since 1996 without too much problems.
The last three Sundays, my left leg has been giving me problems. I'm noticing it by the time the second service starts, and by the time the homily comes and I get my one chance to sit down, my left leg is feeling all wobbly and weak, and muscles are restless. I made it through the last service only by favoring my right leg. Seems if I take pressure off the left leg, it helps calm it down. But as that gets worse, my right leg will tire out faster too. If it doesn't get better, I may have to start chanting in a chair or something.
This past week, on Wednesday, I noticed the same thing happening as I started cleaning the first house. It gradually got better, though. I think moving helps it, instead of standing in one place like I do on Sunday mornings.
3. This one is the most annoying. You may recall I mentioned earlier this year that my right hand was slightly tremoring and feeling stiff, and if it followed my left hand's progression, I would be having difficulty typing with it by November.
Not too long after upping my dose, I started to have trouble accidentally double and triple clicking the mouse on my computer. For all the world it feels like I just click it once, but it does a multiple click.
One time I clicked on the file manager icon, and it opened up five copies of it. Like, I don't even see how it could have clicked it that many times in the fraction of a second I press on the button. But obviously my pressure on the button isn't constant. I've noticed this too when I'm trying to mark text, and it stops marking it and tries to move it.
When I right-click to bring up a context menu, I have to be aware of any clickable links behind my menu selection, because chances are I'll activate them too. I've accidentally closed more than one program.
I've compensated by lowering the double-click window time, but since the multiple clicks happen so fast, all that's ended up doing is making it hard to intentionally double-click something. Instead, I've learned and used a lot more shortcut keys for functions, and put in shortcut keys to start programs (I had to learn how to do that in Openbox, my Linux desktop control program, not as easy as in Windows).
That said, so far I've not noticed any significant loss of motor function in my right hand. It still types fine and works smoothly, unlike my left. If it's doing that good by November, it will be doing better than my left hand did in its progression. It is just this accidental double-clicking that has started this month. While it could be due to PD progression, it is curious it started about the time I increased my dose.
So this past Wednesday night, I sent a message to my neurologist about the new symptoms. She recommended I go back to the earlier dosage for now. In the next couple of weeks, I should be able to tell if the above symptoms go away, meaning they were due to the medication and not PD itself. Or I may discover that some of them are due to PD progressing as well. Well see.
The down side if the medication is causing these new symptoms is that this medication is the primary one for treating PD. There are others, but tend to only be effective in the earlier stages. Eventually for most PD patients, they end up on high doses of Sinemet despite the dyskenesia symptoms it creates, because the pain of not being on it is worse than the side effects of the medication. That I may be having those symptoms at such a low dose and early stage isn't good news.
I've gone back to my old dosage for a day and a half now. I can feel the stiffness and pain in my arm more, but it is bearable. Hard to tell if the above symptoms have lessened or not. Might notice something this Sunday, but more likely it won't be noticeable until next Sunday, as it takes about a week for the dopamine levels to adjust to the new level in the body.
Next neurology meeting is Nov. 10th, a month away. Plan is to maintain my old dose level for the next month, see how that goes, discuss options with the new doctor, and hopefully come up with a new plan. If in two weeks the above symptoms persist, then it might indicate a progression in the PD itself.
Fun, fun fun. Not. But it is what it is. I figure God has some lessons to teach me through this. One, I'm sure, is to learn how to depend on Him more, and this broken jar of clay, less.
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