To Zelnorm or not to Zelnorm, questions about an adventure in hoarding....

[bungeedog]

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!

 

 

 

 

[Miki]

bungeedog- You just had to bring up Zelorm.......kidding.

I have not hoarded any Zelnorm. I feel angry about the whole situation. They made it too hard to get so it is not surprising what happened. I am not sure if you have tried Motegrity yet. I wish I tried what was available in the U.S. but my doctor had a plan to get Zelnorm covered and he didn't want me to do anything else.  Since Zelnorm isn't covered for you, could you try something else that might be first? Just a thought.

I never thought this Zelnorm worked as good as the original or even generics from India after it got pulled in 2007, but it does work. I was taking one pill a day. Now I take two.

If you can spend the money, then it may be worth it to you. I filled it right before the announcement and once after.  I am curious how much is out there.  If I could take one pill like I use to, then I would be more likely to pay cash and stock up.  I have never had a medicine upset me like this has. I feel like if it never came back to the U.S., then I may have been able to get Zelmac from Mexico.  It only seemed weird, but my package always showed up. From the sounds of it, that ship has long sailed as Novartis sold the rights.

[Jeffrey Roberts]

Bipolar is a good way to describe the pharmaceutical sponsorship that we seem to have for providing timely access to Zelnorm. Having spoke at the FDA twice to support access to this much needed medication, I am so throughly disappointed in the current sponsor. Providing emergency access would be an essential thing. That's what Novartis did when it was yanked in 2007.

I have seen people hoard meds in situations like this. It's happening now in Canada with an IBS-D medication called Viberzi that is being pulled from the shelves by the sponsor. It's already super difficult to find.

Ibsrela is a very different type of med that's exciting and may work just as well, but it's really new and a big unknown.

This is a crazy idea, but if you used a GoFundMe and were able to generate the funds to buy it then you would do it. Maybe if you create a GoFundMe you will get access to the meds for 5 years and also raise awareness. Happy to promote that on all my social channels.