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Old 02-10-2014, 02:01 PM
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
Member
 
Join Date: Dec 2006
Posts: 724
15 yr Member
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My experience has been with another ailment, Polycythemia Vera. I tried all the chemos for that and could not take any of them--had ER visits, horrid side-effects, well documented by hematologist. So when I went for p32 radiation (which worked without side effects) I never had to apply. Mayo Clinic took care of all that. Taking p32 is now so rare, since the chemos are available, that the gov't probably just said forget worrying about it. But actually I don't know if that attitude will persist if I am asked to go for a third time for p32 at Mayo....I hope I don't have to go, even though being at Mayo was quite an experience in many ways, and their neurologist was great (had not seen a neurologist in years, found them hopeless for me).
As far as other drugs go. I now have to pay twice as much for Synthroid as before. But so far I have just paid rather than try to prod the hornet's nest. All doctors say that I need to take the Brand Name, Synthroid, even if I am OK with other generics. My pharma has been great about special ordering certain generics for me, such as one particular company's "Propanalol", since I have some reaction to other companies' Propanalol. So far I have not had to "fight" for the big ones.

I never tried an MS drug. I read the box label for Betaseron (is that the name, it's been a while?) and decided that I was already depressed and didn't need to chance it. My neurologist didn't think it would do any good anyway, and thought my MS was sufficiently under control to not risk trying anything new, with my drug sensitivity. I realize now that Betaseron would have had me in the hospital with a purple toe, bradycardia, and difficulty breathing, because I did try the Alpha Interferon drugs for Polycythemia Vera, and the result was "purple toe", extreme neuropathy, bradycardia, etc. My sensitivity has kept me sometimes for having to "fight" to get drugs--I just would have to fight the drug itself.
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