Quote:
Originally Posted by Brennan068
My GP is a great guy who has done a good job of looking after me so far. I'll probably not bother tracking down a new neuro unless mine doesn't come back. This trip has given me the info I need so that I'll be able to work with my GP to manage my treatment on my own.
I did have reservations about starting steroids. They absolutely have their own complications and that was what Dr. Nicolle stressed. Mestinon is a great drug for treating the symptoms and it comes with the least side-effects of any MG drug. To get "better" at this stage, I have to go to something that will suppress my immune system for a while. Pred is a 6 month - year course before it would do what it needs to... Immuran is a year plus before it has finished doing what it has to do. A combination of the two is also an option. Celcept is unlikely due to co$t.
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As we know each person is different and reacts different etc. etc. etc... that being said - Dr. Nicolle put me on prednisone & immuran - prednisone because it would kick in faster along with the immuran - I was slowly weaned off the prednisone and done it by 9 months - by that time the immuran was working on its own. I will be on immuran the rest of my life but come spring Dr. Nicolle is going to cut down my dose and see how I do - they do this to see what happens and if you can get by with a lower dose. During the time I was on pred I had bloodwork done every week then every two weeks... keeping close eye on my liver etc. etc. .... now I have bloodwork done every 2 months for liver and white/red bloodcells. I honestly don't know if I had any side effects from prednisone - I didn't seem any different but my eyes sure got a heck of alot better faster!! Immuran can take 1 year to work - that is why you go on prednisone too - to get faster help.
My neuro here at home said I am one of only two in her practice that can handle immuran - most are on celcept - and Dr. Nicolle has ways of getting around the cost of celcept if you can not tolerate immuran - saying its the only option etc. etc. and costs are covered then.
My MG is in my eyes mostly - now under control. As Dr. Nicolle says - treatable but not curable...