bungeedog Posted August 19, 2022 Report Share Posted August 19, 2022 Please allow me to vent.. Lord, the ups and downs of Zelnorm. If there was ever a medication that had bipolar disorder in terms of availability this would be it. I have used Linzess, Trulance, Motegrity, every magnesium/sodium type thing under the sun, PEG, senna, biscodyl, you name it. I have not used Amitiza or lactulose (terrified of the sugar, I can't digest fructose or lactose at all and they make me really sick when I eat them...) but Zelnorm initially worked. I took it till it was pulled off the market and it gave me back my life. The FDA pulls it, and my gut goes into a tailspin. When it was brought back it was not as miraculous as before but again, was the only medication that really helped and some days I actually didn't feel like a person with a diagnosis of CIC...when it didn't work it still got rid of the constant nagging pain. When I turned 65 I had to buy it myself (go figure, the guys at the FDA told me they had no data to support the restriction they just "thought it was a good idea", but who needs these meds the most? Older people, hello....) but it was still worth the money. It makes me feel like a normal human, not someone with an alien living in my gut. Now I'm faced with do I pull money out of savings and stock up - to the tune of roughtly 20 grand or so for 5 years worth, or do I let my health deteriorate again. The pharmacy here just got some in - and a physician gave me a script for 5 years worth. Is this crazy to do? Is anyone else feeling "hoard-y" about Zelnorm? This is making me nuts. I have not tried Ibsrela - and can find very little about it from users online. It's really expensive, insurance companies don't seem to cover it consistently and I'm being forced onto Medicare and none of those plans cover it. At about 1500 a month it makes Zelnorm look like a piece of cake - since we're talking out of pocket - but like all meds buying many years of Zelnorm is hedging my bets. I took it for years and years before - it always worked. Now that my gut is so much more damaged in the interim it's not the miracle it was, but it's still pretty miraculous generally. What a position to be in....except this time I doubt anyone will bother to pick it up again and manufacture it. I had to vent, it's just to nuts. Health care in the US is more like Health We-Don't-Care. It's like being in a toxic relationship, you can't get out of it but staying in doesn't work either. Yuck! 1 Quote Link to comment Share on other sites More sharing options...
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