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citicoline and alpha-GPC supplement effectiveness

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Old 10-03-2017, 08:04 AM   #1
gpbarnett
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Default citicoline and alpha-GPC supplement effectiveness

Has anyone had success with citicoline and alpha-GPC supplements?

I am reasonably sure that I have developed Myasthenia Gravis as a side effect of immunotherapy. No blood tests yet, but my oncologist thinks I have MG from the immunotherapy.

My main issues are general fatigue, weakness, tingling, facial paralysis on my left side (same side as my cancer), difficulty chewing and swallowing. All of these symptoms are confounded by previous treatments (partial glossectomy with free flap reconstruction, radiation, radical neck dissection, etc etc etc) and a growing tumor that have left my tongue/throat in generally bad shape. I was down to a liquid only diet, and was considering a PEG tube.

After leaving an immunotherapy clinical trial but before being diagnosed with MG, I started taking citicoline and alpha-GPC to fight chemobrain. After taking one dose of 150mg each, I woke up the next morning with no tingling in my face, less facial paralysis (I also have paralysis issues from my last surgery), and chewing and swallowing returned to where they were before the immunotherapy.

I've had the tingling, facial paralysis, chewing and swallowing come back a little bit for a few hours at a time, but citicoline and alpha-GPC twice per day seem to be keeping it under control. Fatigue and weakness also seem to be diminishing. Also taking prednisone, but started that days earlier.
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Old 10-08-2017, 08:02 PM   #2
AnnieB3
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Hi, gpbarnett. I'm sorry you are dealing with cancer. Have you looked into macrobiotic diets?

I have not tried those modalities. Citicoline does increase acetylcholine (ACh), but usually someone needs a cholinesterase inhibitor to fend off Acetylcholinesterase (AChE), to keep it from mopping up ACh too quickly.

I wonder if Citicoline is working on your nerves, helping to heal them. That supplement has been shown to help those with microvascular induced cognitive damage.

Citicoline (Cognizin) in the treatment of cognitive impairment

Have you had your B12 checked? Even if you don't have a deficiency, the B12 will help with your peripheral nerves. There is a bit of disagreement about cancer patients using B12.

Elevated Plasma Vitamin B12 Levels as a Marker for Cancer: A Population-Based Cohort Study

Mayo found that B12 goes straight to a cancer (looking, still can't find that study!). The usefulness of this has yet to be fully determined.

Patent WO199718231A1 - Radionuclide labeling of vitamin b12 and coenzymes thereof - Google Patents

Vitamin B12 Evidence - Mayo Clinic

Tumor imaging via indium 111-labeled DTPA-adenosylcobalamin. - PubMed - NCBI

Doctors can't say you have MG unless they do the specific antibody and EMG tests. Muscle weakness in MG is all about fatigable muscles that get worse with activity, relatively better with rest (and drugs).

I hope you will talk to your doctors about anything you take. And some things may interact with any other meds you might be on. I hope you will be cancer-free!

Annie
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Old 10-13-2017, 05:52 AM   #3
gpbarnett
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Quote:
Originally Posted by AnnieB3 View Post
Have you looked into macrobiotic diets?
Macrobiotic isn't for me, but my diet does have similarities (was vegetarian for almost 3 decades, rarely eat meat/fish).

Quote:
Originally Posted by AnnieB3 View Post
Citicoline does increase acetylcholine (ACh), but usually someone needs a cholinesterase inhibitor to fend off Acetylcholinesterase (AChE), to keep it from mopping up ACh too quickly.
I suspect that I will be prescribed a cholinesterase inhibitor.

Quote:
Originally Posted by AnnieB3 View Post
Have you had your B12 checked?
Not yet, but should be getting that done soon.

Quote:
Originally Posted by AnnieB3 View Post
Doctors can't say you have MG unless they do the specific antibody and EMG tests. Muscle weakness in MG is all about fatigable muscles that get worse with activity, relatively better with rest (and drugs).
Myasthenia Gravis panel came back negative, but it is my understanding that it gives about 10-20% false positives.

Quote:
Originally Posted by AnnieB3 View Post
I hope you will talk to your doctors about anything you take. And some things may interact with any other meds you might be on.
We've already found one major interaction. I've had to stop Botox injections for first bite syndrome, as they are potentially fatal with MG. It is possible that I don't have MG, and that my symptoms are from the immunotherapy having some interaction with Botox, combined with choline deficiency and anorexia cachexia.
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Old 10-21-2017, 12:20 PM   #4
AnnieB3
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Botox could possibly send a MG patient into a crisis, or be fatal.

If you continue Cognizin, make sure that the doctors know that if they give you Mestinon. If you have a choline deficiency, that could explain weakness.

I hope you are doing okay!

Annie
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Old 11-02-2017, 08:45 PM   #5
gpbarnett
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Hoping to get a mestinon prescription soon as I'm already taking the maximum amount of choline that is likely to be safe, and it isn't enough. I have a referral in for a neurologist, but my appointment is weeks out. I'm on their list to call if someone cancels. Have an appointment tomorrow with my PCP, who will hopefully write the prescription to hold me over until I see the neurologist.

This is what I'm finding so far with choline supplementation:

citicoline + alpha-gpc:
usually takes 20-30 minutes to kick in, usually lasts for 4 to 8 hours.

soy lecithin or eggs:
takes 5-10 minutes to kick in, usually lasts just over an hour

choline bitartrate:
Actually makes things slightly worse. I get sweaty and agitated - hard to describe the feeling exactly, but it is very similar to taking dexamethasone when you are hypokalemic - overstimulated, but your body just can't use the stimulation for anything useful.
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Old 11-04-2017, 11:21 PM   #6
gpbarnett
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So, the last few days have been interesting.

One of the side effects from my immunotherapy is that I can rapidly switch from hypothyroid to hyperthyroid and back again.

Sometime this week, I either switched from hypo to hyperthyroid, or have just overtreated hypothyroid with levothyroxine.

On Thursday, my choline supplements were not working as well as usual. I have weekly physical therapy sessions, and I had taken the citicoline/alpha-gpc about an hour before. Symptoms of hypothyroid were worse than usual, and the supplement wasn't doing much at all. How much I can do at each PT session has varied widely, but I've always been able to complete them and then drive home. This time, after 7 minutes of very mild activity, I hit the MG wall and couldn't do any more.

Didn't have the strength/energy to drive home, so I went to the hospital cafeteria, and had 2 hardboiled eggs, slice of whole wheat bread, margarine, and a soylent drink. It took me about an hour and half to eat that tiny meal, but by the end, the choline kicked in. I ended up with just enough energy to drive home. Had to sit in the car for another hour, until I could get out and go inside.

Later that night, I was just wiped out, and started to have a little bit of labored breathing. By 2AM or so, it was getting difficult to breathe. I tried using the BiPap machine I used to have to use for sleep apnea (have lost about 75lbs since being diagnosed with cancer a little over 2 years ago - small silver lining is that my sleep apnea has almost completely gone away) but that just exhausted me more. Started to fall asleep, but was jolted awake by apnea.

Took a larger dose than normal of prednisone, along with more of the choline blend, and then off to the ER. I asked repeatedly for an arterial blood gas, to rule out myasthenic crisis, but they did a bunch of other tests first. Mostly they were checking for heart attack, but they did do a grip test and some resistance tests.

As always when I get a grip test, I forgot to mention to them that when not affected by MG, my grip strength is much higher than average. So far, even when my MG has been at its worst, I can still easily use the 9 lbs per finger Gripmaster heavy strength hand exerciser (I usually use the 13 lbs per finger XX-heavy model).

After I'd been in the ER for about 3 hours (and was improving) they did a negative inspiratory force meter test, which I was able to exceed the maximum on. I did explain to them that 30 minutes earlier, my test reading would have been much lower. I also got them to agree to do multiple tests - it took about 5 or 6 before I started to get fatigued and not be able to max out the gauge (but was still well above normal).

Bonus: it is supposed to be a single use device, and they were going to throw it out, but they let me take it home. So now I have at least one objective test I can do if my breathing becomes labored again.

At about hour 4, when I was mostly recovered, I finally convinced them that testing for blood CO2 was appropriate. ER doc convinced me that venous blood would be accurate enough, and since I already had my IV port accessed for their earlier blood draws, would be safer and less painful than drawing arterial blood. I'm reasonably sure the ER doc was correct, and that standard of care procedures for possible myasthenic crisis should probably be updated to state that venous blood is sufficient, at least as a pre-screen before going for arterial blood.

Was discharged around hour 5, after blood work was all back. My TSH was super low, and T3 & T4 were elevated.

Went home, took a 30 minute nap, and then went to my scheduled appointment with my PCP. Was prescribed pyridostigmine 60mg 3x/day.

Shortly after the appointment was over, started feeling the symptoms of hyperthyroid.

So - based on this extremely small sample (confounded by a huge list of other medical issues) it seems that when flipping from hypo to hyperthyroid, choline supplements get metabolised rapidly, and are not super effective.

It is possible that when hyperthyroid you metabolise choline faster, but since I started pyridostigmine, it is impossible for me to know how much of my choline lasting longer is from pyridostigmine without stopping it, which I'm not willing to do right now.

It is also harder to compare, since when hypothyroid I don't have much energy to do anything. When hyperthyroid I keep feeling like I can do more, but then quickly get worn out.

I have upcoming appointments with a neurologist and endocrinologist who will hopefully be able to sort this out a bit better.

This was the first time my PCP had ever prescribed pyridostigmine - he has one other patient he suspects might have MG and ended up asking me a few questions about how I was diagnosed. I still don't have a definite diagnosis, but I told him about grip tests, ice pack, MG panel, MuSK antibody and single fiber EMG tests.

Since I used up more of my choline blend supplement than usual, I went to reorder today, and it looks like it has been discontinued! There is another brand (not a cGMP certified manufacturer) that sells a similar blend - but it didn't work for me at all (I suspect the citicoline and/or alpha-gpc on the label was actually choline bitartrate). So I've ordered bulk powder of both, and a capsule filling machine. Will experiment to see if either form of choline works on their own, or if it the combination that works for me.

I have been keeping pain meds with me at all time for "rescue" purposes, just bought a larger pill organizer so that I can also have prednisone, choline supplement, pyridostigmine with me at all times.

A huge source of frustration, is that it is looking more and more like what was identified as a recurrence isn't actually a tumor, but necrosis. I had asked about a biopsy to confirm a tumor before immunotherapy, but was told there was almost no chance of it not being a tumor. I should have pushed harder to get a biopsy back then, but let my oncologist talk me out of it.

I should be getting a biopsy this week, but more likely than not I didn't need the immunotherapy that has caused myasthenia gravis, caused or exacerbated thyroid and other issues, a few of which have nearly killed me multiple times, left me disabled, unable to work, unable to do most of my hobbies, and generally made the last few months miserable.

Even if it is a tumor, it is looking like immunotherapy should not have been the primary treatment. I'm probably going to be getting either an experimental ultrasound treatment, or more likely, CyberKnife.
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Old 12-13-2017, 06:42 PM   #7
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Just a quick update:

Thyroid calmed down a bit, and I experimented with different combinations (each form of choline separately, together, with and without pyridostigmine). The best combo I've tried is 150mg each of Alpha-GPC and Citicoline along with 60mg of Pyridostigmine. Typically keeps MG symptoms fairly well under control for about 8 hours, less if I'm feeling very hyperthyroid.

It did turn out to be a tumor, not necrosis. Went through CyberKnife and chemo. Chemo will continue at least until I get a followup scan in a few months to see if the tumor was treated successfully.

With the combination of MG, thyroid and fatigue/weakness from CyberKnife and chemo, I've been in bad enough shape that I often have to use a walker/rollator, and have a handicap parking placard.

Still no definite diagnosis of MG, but a referral has been put in for a single fiber EMG test.
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