First Steps at Treatment
 

I love the idea of getting all of you to help me second guess my treatments:)

I like my Neuro. Especially because, although he did not say it at the time, I think he had me diagnosed within 10 minutes of talking with me. After confirmation he told me about MG.

I've had symptoms for about 6 months limited to speech and eating/swallowing problems. I was diagnosed in January. I need to control the speech as It will definitely cost me my straight commission sales job (I sell high end german cars). I afraid I can't afford to loose my job and health benefits at 60.

The Mestinone has helped but not 100% in controlling symptoms. We did 3 days of IVIG and I was symptom free, but only for 10 days or so.

I guess the options are:

1) IVIG every couple of weeks?
2) Plasmaphoresis?
3) AI chemo?

Just checking to see if I have a good understanding of my situation.

HI Scot, welcome aboard...
You will find at
http://neuromuscular.wustl.edu/mtime/mgrx.html
a comprehensive survey of MG treatments with their side effects and time to kick in.
Maurice.

Hi, Scott. Some of us have found that the first course of IVIg had much less of an effect than subsequent courses. So if you have it again, it might last longer. I think six weeks is typical. Your doctor may try you on a higher dose, too.

Did your neurologist talk to you about adjusting the Mestinon dose? I thought it wasn't working at all for me, but it turned out I was taking too much. A dose that is too high can make you worse. Some neuros allow their patients to work out the dose that is best for them--within certain guidelines, because too much Mestinon can be dangerous.

You say "AI chemo," and I'm not quite sure what you mean. There is a whole array of immunosuppressant drugs. Some are easy to tolerate (I'm on Imuran, with no side effects that I notice) but work more slowly if at all, and some are harsher and riskier and work more quickly. Prednisone works very well for some people, and works quickly, but comes with risks and side-effects that I personally am trying to avoid. At some point, when I've really exhausted my other options or if I get worse, I will consider it.

You will learn what triggers symptoms, and what helps you avoid getting really weak, but you'll learn faster if you journal.

Abby

I also wanted to say: you are near the beginning of this disease, and especially early on, it can change and surprise you. You need to understand that MG can tank really quickly. If you have any trouble breathing, or symptoms that are severe or getting quickly worse, that is an emergency. You have to get to the ER right away, or call an ambulance.

Abby

Hi,

I think the "AI chemo" he is referring to is "immuno-ablative" chemo, or reboot. That is a huge step, and it would be somewhat reckless of a doctor to recommend that without at least 3 treatment failures using other immune suppressing drugs. With your age being 60, you are pushing the limit there as well. You also need to have almost pristine health for such drastic treatment--aside from the MG, of course. :p

Scott, have you tried prednisone? That usually works very quickly and can be good to get on board while choosing another, slower acting immunosuppressor. Since your symptoms are mostly bulbar and ocular, do you have MuSK MG? If so, that is more difficult to treat and requires slightly different treatment.

Good luck...keep searching for answers!

treatment options
 

my husband went three years with IVIG x2 azathioprine which helped but he had a reaction to so had to stop...cell cept and low dose prednisone... what helped was a higer dose prednisone 60mg a day and then after 2 weeks decreasing...within 2-3 weeks he was symptom free he is now on cellcept and 15mg prednisone every other day and symptom free since for 7 months

I was thinking of drugs to take that could effect the Auto Immune system. Cortisone being the first to come to mind, but I know there are many others.

I started with 30 mg (1/2 tab) 3 X per day. I was still having symptoms but so I went to 60 mg 3X/day.

It still affects my speech one or two times a day. I now I shouldn't be complaining but in my sales job it really puts me 'off my game' so to speak.

I tried going back down to 1/2 but that was worse. I have not tried more.

I have a minor side effect in that I almost continuously feel a 'little light headed' I also have some ringing in the ears.

Are some of you suggesting I try 1 and 1/2 - 3 times a day?

Right now I'm waiting two weeks to get back into my doctor to talk about a second IVIG treatment.

I felt great for a week!

Scott,

I'm sure you know this, but I have to say it: don't increase your Mestinon dose without your doctor's OK. It can be dangerous. If you take too much, it can make your symptoms worse, and if you really take too much, it can put you into crisis.

If you talk to your doctor about taking more Mestinon, he will probably suggest that you take the pills closer together instead of taking higher doses. Mestinon has a short half-life, which means it leaves your system quickly. Ask you doctor if you can adjust the timing of the dose you're already taking. For example, if there's a certain time of day that you usually get weak, you can make sure that you have the full dose of the drug in your system at that time. Or he might tell you to try four or five doses a day instead of three. I think most neuros start with the doses six hours apart, but many of us take Mestinon every four or even every three hours. There's also a time-release version that works for some people who have troublesome symptoms at night.

Best of luck with your next course of IVIg! I hope you get more than a week out of it this time. I bet you will.

Abby

I had not thought of taking more often than six hours. That might help me. Maybe 30 mg every 4 hours instead of 60 every 6 hours.