[michail]

I have generalized myasthenia, but it is mostly contolled; one of the first symptoms to go/reappear is the double vision. Mestinon does not work very well on eyes; I would say that Prednisone has a much better impact on eyes; it has both long term effect, but also a short term improvement; by short term I mean after taking Prednisone (15 – 20 mg in my case), there is a notable improvement in double vision after about 5-6 hours which lasts for about another 8 hours.

[michail]

I would say that “objective” tests like SFEMG are not really that important for determining MG, and a neurologist who is WELL TRAINED should see the symptoms of MG immediately without any need for these tests. There are two explanations for your case: either the neuro is really not very good at it and tries to do it by “the book” or your case is really not that clear.

If you have clear-cut improvement with Mestinon after 1 hour, that speaks with very high probability that you have MG.

if you come to see a doctor with your symptoms controlled (by Mestinon), than it is quite possible that the doctor will not find MG symptoms. My doctor sometimes was not able to see any symptoms except for double vision (when looking to one side and following the finger).

Now the second part is whether you need or not to have immunosupressant treatment, even as simple as prednisone is another issue.

If Mestinon controls most of your symptoms and you can tolerate it well, it is wise to stay just on Mestinon and increase the dosage/frequency of it (I was taking up to 10-12 60 mg pills daily). 3 pills per day is a good starter, but you have a lot of leeway for higher dosage. You must understand that Mestinon is acting only about 45 minutes after taking and for no more than 3 – 4 hours, so the effect disappears completely after that.

What surprises me somewhat that you have low oxygen in blood. With MG, that is usually the case only if you are in crisis or close to it, and can not really breathe; it is one of the last symptoms to appear, and then it goes bad very quickly. Blurry vision, if it is double vision or “heavy eye” feeling (i.e. your eyes feel like they can not follow well moving objects, but without having double vision), is a classic thing of MG.

If you should try prednisone or not, is a difficult question, but if you do try it, you can expect relatively quick improvement starting from about 10 days and certainly after 30 days.

But remember, in general, the need for treatment for MG is mostly determined by how you feel and cope and not by objective tests. What is important is to exclude other possible conditions.

[michail]

I am getting 500 mg every 5-6 months now for two years already, only the first infusion was 1000 mg.

My neurologist also wanted to do two infusions of 1000 mg spaced some 2-3 weeks apart and then keep 1000 mg ecvery 6 months or so; during the first infusion I had very high blood pressure (110/200) and decided to scale back the dose; I would say the effect kicked in after about 6-8 months, and since then it continues to improve. Not sure if with higher dose the effect would have been faster…

[michail]

Most time of the last four years I was taking 15-25 mg of prednisone daily. My weight was relatively stable, I gained at most 5 kg in that time period (from 113 kg to 119 kg), but I was really fat, with BMI 39. Last year, when my MG improved, I started a gliders pilot course, and discovered that there was a weight limit of 103 kg. So… I lost 7 kg in 45 days, 17 kg. in 5 months, and now I am at 99 kg (-20 kg) after 9 months. After reachinhg the 103 kg legal limit, the weight loss became more complicated.

To loose weight:
You need motivation.
You do not have to do some special diet (all of them are meaningless fads)
You have to eat less calories than you use.

Basically, I could not increase calories expenditure (long excercise with myasthenia is really out of question), so I had to reduce calories intake. At outset I calculated (using online calculator) the calories needed to maintain weight (3000 for 120 kg and my exercise/life style level), and then set a limit of 2200 calories. A deficit of 800 calories was equivalent to about 100 grams weight loss per day.

I was eating anything I wanted, but at each meal I was calculating the calories, and once the 2200 limit was reached, it was game over till next day…

To summarize:
YOU NEED MOTIVATION
YOU HAVE TO RECOGNIZE THAT YOU ARE FAT (not obese, not overweight), FAT, FAT, FAT
SHUT YOUR MOUTH

[michail]

The only real use they have is if you are close to respiratory failure; I bought one after I ended in emergency; it can help a little, but not when sleeping. It was kind of backup, if you are travelling, far from emergency services; in that case, it may help. But then, any air pump (even a tyre pump), o diving equipment (air bottle with reductor) can work well, and better than CPAP.
CPAP provides relatively low extra pressure, which can help a little bit, but not enough;
I was mad in emergency room that they told me it was either intubation or nothing. What people with myasthenia really need is relatively high pressure air supply which they can control themselves (i.e. you take a breath through hose, allowing the pressure to fill in your lungs, and then you exalem removing the hose (I got rid of the CPAP mask)). This was at least my case a few years ago.

[michail]

The only real use they have is if you are close to respiratory failure; I bought one after I ended in emergency; it can help a little, but not when sleeping. It was kind of backup, if you are travelling, far from emergency services;  in that case, it may help. But then, any air pump (even a tyre pump), o diving equipment (air bottle with reductor)  can work well, and better than CPAP.

CPAP provides relatively low extra pressure, which can help a little bit, but not enough;

I was mad in emergency room that they told me it was either intubation or nothing. What people with myasthenia really need is relatively high pressure air supply which they can control themselves (i.e. you take a breath through hose, allowing the pressure to fill in your lungs, and then you exalem removing the hose (I got rid of the CPAP mask)). This was at least my case a few years ago.

[michail]

Takes at least 1 month to improvement, possibly up to 3-4

[michail]

I am using Rituxumab.  I had problems with all other immunosupressors (azathioprine (gave me hepatitis), micofenolato mofetil (barely manageable, head aches and many other neurological side effects), tacrolimus (after 6th tablet I was completely out). So Rituximab was the last opportunity.  Seems to be working, although one can not be 100 % sure.  I am using 20 mg prednisone + Rituximab for a year now; I was not able to reduce prednisone, but overall, I am doing things which I was not able to do 1 year ago, like getting a glider pilot’s licence, flying for hours, driving for hours, walking 4-6 km on flat terrain, slow hiking (climbing mayve 400 meters), etc.

Rituximab has very few side effects for me.  The first infusion was rather scary, because I got very high blood pressure (up to 200), and the dose was 1000 mg.  In hind sight, it should have been split in two (Initial idea was to do 1000 mg followed by another 1000 mg two weeks later, and then maintenance dose every 6 months).

As it turned out, it was 1000 mg followed by 500 mg after 6.5 months, followed by another 500 mg 5.5 month later.  I had the feeling that the third dose was too late, and I am planning to repeat 500 mg every 4 months from now on.

Long term effects were actually beneficial: it lowers slightly blood pressure and slows the heart, which offsets the prednisone effect (higher blood pressure and higher heart rate).  So now I have an almost perfect 60/80/120… 60 heart rate 80/120 blood pressure.

[michail]

There is a very simple test which was basically used without any blood tests to determine if one has MG or not.  Mestinon.  I had double vision, after oftalmologist examined me, she told me to see a neurologist, that one examined me and suggested just trying out Mestinon.  I took 1/2 tablet and after 45 minutes my symptoms improved… later on a tymoma was found, but Mestinon is quick and safe way to check if one has MG. In hind sight I should have used a slightly higher dosage (1 x 60 mg pill), and now my regular dosage is 120 mg x 4 day. Some people may have gastrointestinal effects, so it is prudent to try out a smaller dose first, but to get full effect, 1-2 pills may be necessary. The action window of Mestinon is about 45 minutes to 3 hours; after that the effect  fades quickly.

[michail]

I doubt that it is the salt per se that causes flare-ups; but in my case any prolongued hot-water bath indeed results in worsening of the symptoms, to the point that I am avoiding baths alltogether.

[michail]

I do not swallow mestinon, just “eat” it, it is bitter, but ok. I am not sure why you would want to use liquid one, virtually no point…

[michail]

Prednisone increase works fast (usually 2-3 weeks for me, with first signs of improvement usually by the day 10), so increasing the dose of prednisone is probably the correct thing to do. Once you are stabilized, one can try and figure out if different treatment is needed.

Prednisone reduction is a slow process, I am not sure if one would need a whole year to go back to the baseline, in my case that would be 2-3 months; once I tried to do the reduction faster and ended up in emergency.

[michail]

My neurologist taught me about mestinon dosage the following:  it is incorrect to set a frequency of taking mestinon, i.e. 3 times a day, 5 times a day, etc.  Mestinon works pretty much starting 45 minutes after taking and ends about 3 hours after taking it. After 4 hours its effect is almost nil. So to set one’s dosage one should really  try different dosages and evaluate how one feels after about 1 hour.  If it is a little bit too much, I personally may get intestinal symptoms… So my maximum dosage is about 120 mg (I am fat, 115 kg).

Now as to frequency – I take it “as needed”, so during day and activities that would be around every 2.5 -3 hours, if in bed, or similar, maybe one can get away every 4 hours. Luckily, I do not need it during night.