[Scott_S]

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.

[neutro]

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.

[Stellatum]

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

[Stellatum]

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

[4-eyes]

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.

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!

[Scott_S]

Originally Posted by 4-eyes

Hi,


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!

Thanks for the reply. My symptoms are almost all speech and eating/swallowing related. No problem with eye lids, but my eyes do 'tire' (burn) from time to time.

Prednisone has helped, but I still experience speech problems in my job about ever other day or so. Eating is often a chore, not a pleasure.

My Neuro never mentioned MuSK MG, so I guess I don't have that. I think he know what I had from the start, but one of the confirmations was the presence of MG specific antibodies in a blood test.

[Scott_S]

Originally Posted by Stellatum

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

Thanks for the reminder. My symptoms seem so minor compared to many of you that I'd be shocked to have a crisis but I guess it could happen. After 3 days of IVIG I was feeling really crappy and twice I noticed I had short, rapid, shallow breathing that went away after an hour or less.

[Brennan068]

Hi Scott,

As you're aware, you're really early into the diagnosis and solution here. Don't jump from one thing to the other, you'll mess yourself up more.

Have you had an MRI / CATscan of your thymus? --- is there a reason for your developing the condition?

As far as treatment goes, work closely with your neuro and gp. You may want plex / IVIG but if they want imuno suppressants you may be better off going that route.

I hope things work out for you and you can get this managed well and quickly.

Brian.

[Scott_S]

Originally Posted by Brennan068

Hi Scott,

As you're aware, you're really early into the diagnosis and solution here. Don't jump from one thing to the other, you'll mess yourself up more.

Have you had an MRI / CATscan of your thymus? --- is there a reason for your developing the condition?

As far as treatment goes, work closely with your neuro and gp. You may want plex / IVIG but if they want imuno suppressants you may be better off going that route.

I hope things work out for you and you can get this managed well and quickly.

Brian.

Thanks for the response and advice. Yes we did CT Scan and MRI of my brain and my thymus. I'm 60 and my thymus was normal.

Just waiting to something to happen I guess and a bit anxious. Thanks again.

[Scott_S]

Originally Posted by Stellatum

H

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.

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.