I've officially been diagnosed with Myasthenia Gravis. For those of you who looked at/replied to my previous thread, he didn't really say whether he thinks the Amlodipine I was taking would have brought it out or not, but given that it's on a list to avoid, I assume it's a good possibility.

He's prescribed me 60mg of Mestinon three times a day, as well as 10,000 Units of Vitamin D, 500 mg of Magnesium and 1500 mg of Calcium. In addition, we're working with insurance to get an IVIG approved. That would be 5 days straight plus one day a month for a year, although that could change (either up or down) depending on my reaction to it. And finally, we're scheduling an appointment to check my Thymus and see if it is enlarged or not.

So, generally speaking, what should I expect from the Mestinon and the IVIG? I know and have read about the side effects, but what are some of your experiences with it? Did the Mestinon help with the symptoms? And if so, how long did it take to help and to what extent? And how is the IVIG? I'm not a big fan of needles (although considering all the blood I've had drawn this year, I'm a lot better than I used to be), so I'm not a big fan of having one shoved up my arm for 4-6 hours for five days.

Thanks for all your input. I'm sure I'll end up with more questions once treatment starts and appreciate all the insight you can give me into your experience with the disease, the meds, etc.

I don't have MG (i'm still a bit of a mystery, dx with CIDP currently).. anyhow I can tell you a bit about IVIG, I get IVIG every 2 weeks.. I personally don't think the needles are a big deal.... when you feel so bad and weak, a few seconds of pain is SOOOOO worth it to feel better!!!
The most important thing is the rate of the IVIG.. go SLOW at first, see waht you can tolerate.. They ramped me up to 200 the 2nd night of IVIG and I developed aseptic meningitis (not a ton of fun, but again, for the hope that it could help, you get through it)... that can be prevented with a lower rate and lots and lots of hydration. .. drink TONS of water the night before and two days after! I get up to 100 now.. and I start feeling improvement in my swallowing within 24 hours.. and then around the 4th morning I wake up almost a new person, it is quite amazing- suddenly things just work better! I have always noticed my IVIG wearing off - usually around 10 days afterward.. I feel a little icky the next night after IVIG (about 24 hours later).. just a mild headache and a eczema like rash.. however its really not bad.. and again, if it makes you feel better it is SOO worth it! Good luck!!!!

Thanks bny806. The doctor also advised that there can be some bad side effects if it's administered too quickly and to have the nurse reduce it if I start to feel sick. Hoping I don't end up needing it terribly often once the initial infusion is done, but if it helps, I'll do what I have to do!

How mobile can you be while it's being administered? I'm not looking to go for a run or anything, but I definitely won't do well laying down for 4-6 hours at a time, especially for five days straight. Oy!

I would think that the mestinon would be a lot less hazardous to take to start with. I take 60 mg 3 to 4 times a day. It helps a lot.

Official is always good! It now means you can move forwards instead of sideways like some of the rest of us (me of course) with suspected seronegative myasthenia diagnoses!

Most importantly, hope you enjoy a new quality of life with the right medications, and equally as important, the right doctors.

All the best,

Anacrusis

Hey, they tell me that it's really important to be very, very well hydrated before, during, and after IVIg.

Of course this is inconvenient because it means you have to go to the bathroom a lot. That was especially tricky for me, because I needed a walker but couldn't manage the walker and the IV pole at the same time. Here's a handy tip: if you ask the nurse to help you, that's less trouble for her in the long run than if she has to pick you up off the floor when you try to go yourself so you won't bother her! Just passing on that little piece of knowledge, which I read in a book. OK, not.

Re: Mestinon: it wears off fast. If you find it works well, but you get weak again before your next dose, ask the doctor if you can take it more often (instead of taking a higher dose).

Abby

Well, luckily for me, I drink water ritualistically, so hopefully hydration won't be an issue for me when it comes to the IVIg. And the bathroom's only about 8 feet away from either my couch or my bed, so hopefully that won't be an issue either.

So far, the Mestinon seems to be working for me, but I guess I won't know until I've been on it a bit longer. I've been taking it two days so far and I haven't had any issues with my chewing or speaking since yesterday morning. I still have the double vision, but I've been told my eyes look better visually (less droopiness and they're moving together instead of independently of each other). Hoping I might get some more relief over this weekend.

Im interested in something that was said in the post by hijile99. I also take amlodipine fo blood pressure. My reg GP doctor did not mention that, as a problem. Has anyone else heard of this medicine being a problem. I have no Thymus problems or anything else to indicate a cause fo MG.
Would appreciate any input aynone might have
I was on amlopine long before MG symptoms begin. By the way , very well controlled by Mestinon so far
FREDH:

This isn't the original article I saw, but it essentially gives the same information. Amlodipine is in the calcium-channel blocker class of drugs listed under antihypertensive medications. I haven't made enough posts to link up to the article yet (perhaps someone else can), but if you search on Yahoo for, in quotes:

"Myasthenia gravis is a rare autoimmune disease occurring"

it comes up as the first link from the University of Illinois, Chicago.

Based on the conversation earlier, it does seem that different people have different reactions to the medications, and that those reactions can change for a person, as well. Perhaps your reaction to the drug has changed over time and resulted in the symptoms of MG you're having? Obviously, I'm very new to all of this, so I could be making a lot of presumptions.

Good luck!!

I was diagnosed with MG 6 years ago. My neurologist happened to be a specialist with this disease. I was started out on 30 mg of Mestinon every 3 or 4 hours (its been so long, I don't remember the exact time span). The only side effect I had was stomach cramps which only lasted about a week. It worked great for about 4 months but I began having a difficult time talking. My tongue just didn't want to help form the words. The Mestinon was increased to 60mg and then up to 120mg without much of a change. My doctor then put me on Cellcept, 500mg twice a day. And I am doing just great! No side effects whatsoever. Although, as with any immune suppressant, you need to be diligent taking care of yourself. There are a number of side effects to be aware of but they are truly worth the small risk.
The *edit* is a great resource for information also.