Its Been A While
Silly question, for my MG treatment my doctor has me on a temporary high dose of Predisone in and effort to bring my MG under better control as he put it. This is in addition to taking Pyridostigmine (Mestonin)
For those living and coping well, do you take a combination of the slow release mestonin (180 mg) and the quick release mestonin (60 mg) or do you take one or the other and not both?
I think it would be easier to take 3-4 of the slow release version and spread them out over the entire day, rather than a large number of the quick release 60 mg pills when the symptoms kick in. I am finding it hard to manage the sheer volume of pills right now.
And I am wondering if it would be better just to go with the IVIG treatments. supposedly that would give almost a month's relief at a time and only have to have the quick release pills for an as needed when the IVIG effects wear off. Is that true? And would it get me off the current high steroid dose of prednisone? I gotta admit that scares me
Not to mention that the Prednisone
Hi 1964. Glad to see you back. The prednisone dose in combination with pyridostigmine is pretty standard for new MG patients who are trying to get symptoms under control. I am sure your doctor will reduce the prednisone as your symptoms stabilize. I don't like prednisone any better than you, but the drug saves lives every day, and is excellent for the initial control of MG. I also took high doses of prednisone in the beginning and have long since tapered down to zero. Watch your weight. I know you are hungry 24 hours a day.
I took only immediate release pyridostigmine four times a day and it worked fine. I have no experience with extended release. I now take zero pyridostigmine, too.
Azathioprine, a non-steroid immunosuppressant, has replaced all the other meds and is the only thing I take, once a day, for my MG. It's easy and inexpensive.
Your doctor will probably eventually recommend azathioprine or a similar drug, like Cellcept. But they can take months to become effective, so fast-acting prednisone is the stop-gap drug to get and maintain stability. IVIG treatments are hugely expensive, temporary, and, in my opinion, appropriate mostly for recovery from a crisis or as a last resort for stubborn symptoms. Be patient and listen to your doctor, It could take a year to get your medicine regimen right. Once you do, it's a lot easier.and the temp large dose of Prednisone is 45 mg total. Prednisone here comes in only 2 dosages, either 5mg pills or 50 mg pill. But I am not staying on the high dose for long, hopefully, so temporarily I am taking 9 5mg pills of the Prednisone daily, that and the mestonine and other meds I take for other conditions is making management difficult. I am assuming that with IVIG treatments (monthly or whatever it works out to) that I would be drastically ableto cut out the steroids and much of the mestonin. Can anyone confirm that? It would make the IVIG worthwhile in my opinion if it could
and along with the high dose of Prednisone comes the difficulty successfully losing weight. Not to mention the fact that sustained high dose will bugger up my bones. Now to add insult to injury, at 61 years of age I am dealing with a massive outbreak of acne! I don/t need this added complication. Ready for the alternative meds
