tag:blogger.com,1999:blog-19312567.post4827755881675150770..comments2024-01-11T00:28:08.521-05:00Comments on Caregivingly Yours, MS Spouse Caregiver: What price hope? Multiple Sclerosis medicationsAnonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-19312567.post-55998441727984098682009-09-03T18:53:56.002-04:002009-09-03T18:53:56.002-04:00In calculating the cost of reducing the risk of a ...In calculating the cost of reducing the risk of a negative outcome by 9%, I'd add the hassle and time required for daily/every other day/3 times a week/weekly injections, or monthly/every three month infusions. I didn't start any disease-modifying drugs until 14 years after my first MS symptoms. I eventually tried Betaseron, Novantrone, and Tysabri, none of which seemed to make much difference for me, one way or the other. Maybe if I had tried them earlier, they would have been more effective. May be so. Or maybe I just saved myself 14 years of hassle and expense. For a 9% difference in outcome, I can't say I regret my decision.zoomdoggieshttps://www.blogger.com/profile/11576886847864593216noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-59387097177793969802009-09-01T14:47:34.987-04:002009-09-01T14:47:34.987-04:00The price of "HOPE" just like the Visa a...The price of "HOPE" just like the Visa ad says is priceless. don't ever give up hope that things will change.Cathyhttps://www.blogger.com/profile/04942824872182493224noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-77310327866431949092009-09-01T13:10:41.347-04:002009-09-01T13:10:41.347-04:00its a shame it usually comes down to the mighty do...its a shame it usually comes down to the mighty dollar and making a huge profit at the expense of others; sad that Patti couldn't have at least been able to try Betaseron when her symptoms "too progressed". It might have prevented her from becoming increasingly progressed and given her more years of functionality outside of a wheelchair and saved your back a bit....<br /><br />I don't know what the answer is with healthcare and reform and drugs like this, etc., but I know the present system sure isn't working <br /><br />bettybettyhttps://www.blogger.com/profile/06323135450742337670noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-18579154779823924392009-09-01T12:43:53.210-04:002009-09-01T12:43:53.210-04:00I wish there was the same level of transparency fo...I wish there was the same level of transparency for treatment efficacy as there is for treatment safety. When a treatment has side effects, the company must provide information on who is affected how often and under what circumstances. When the treatment has no effect for certain classes of people, they just say "better luck next time."stevehttps://www.blogger.com/profile/18134766859291227041noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-23631383542938580782009-09-01T11:55:30.664-04:002009-09-01T11:55:30.664-04:00Patrick - Skip took Copaxone for a number of years...Patrick - Skip took Copaxone for a number of years with the presumption that she had SPMS not PPMS (no strong evidence either way). Fortunately, she had drug coverage where it only cost us a $15/quarter copay and the rest was paid for by BCBS (showed about $5k/quarter on the invoice as their cost). She finally discontinued its use a month or so ago as her progression has not slowed (in fact, its speed has increased) during her use of Copaxone. I'm not saying the disease progression has sped up because of Copaxone, just that it hasn't demonstrated efficacy as far as we can see.Crankyhttps://www.blogger.com/profile/07995365444853477833noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-81250915187418810122009-09-01T09:23:34.697-04:002009-09-01T09:23:34.697-04:00I would say pirates. It seems as if they're pr...I would say pirates. It seems as if they're profiting off of whatever hope those who need their medications have. (Hugs)IndigoSage Ravenwoodhttps://www.blogger.com/profile/17143502548162174269noreply@blogger.com