"Industry Shortage" of Elmiron

[musiclover]

I'm wondering if anybody else is experiencing this. I've been on Elmiron for a couple of years now, and yesterday was the third time that I went to refill my prescription at Kaiser and they told me they are out because of an industry shortage. On top of that, they won't pay for me to pick it up at any other pharmacy outside of Kaiser, unless I just pay the full price as if I had no insurance. They gave me 30 capsules yesterday and charged me for a full month! I said I take 4 a day! They said I still have to pay the full price because it's not their fault it's an industry shortage. They also said they won't have more until OCTOBER! AHHHHH!

[nottoc4]

My CVS had been on back order last month but this month I had no problem getting my 90 day supply. The pharmacist told me he had 6/90 day bottles on hand. No shortage for them.

[musiclover]

Interesting. I don't think there really is a shortage. They are just trying to get rid of members who use expensive Elmiron I think. Hoping we'll switch to another insurance provider or something.

[vwfaerie]

Letter from Walmart

Today I received a letter from Walmart pharmacy (I use Sams club). It says their has been a supply shortage and this is temporary and has now been resolved. "Please call Sams club to see if it is available"
I live in west Texas and have not had a problem yet getting my meds.

[mary124]

I've never had a really big problem with it. I use Wal-mart and yes, I might get only a week but usually by the end of the week I get the rest. I don't pay for it till its all filled. If they can't fill any of my medications, they usually call another Wal-Mart or another pharmacy to see if they can.

[nineteenwinters]

I get mine from Canada and haven't experienced a shortage yet. Since it's the only drug of its kind I am really worried about the shortage you are experiencing. Do you think it's because more doctors are becoming aware of IC and diagnosing more patients than they did?

[Zygala87]

I think a generic is coming out and the company making Elmiron does not want to get stuck with a large amount of meds that they can not sell. Just my opinion of course. Something smells about this whole problem. Time will tell. I hope I am wrong. Hugs, Ziggy

[nineteenwinters]

Hmm...if a generic came out I'd be happy. It's $500 for me here in the states and even when I order from Canada it's $120. If a competitor came out that caused them to lower the prices even a little I'd be all for it.

[Winged1]

Canadian Source?

I'd love to know exactly what Canadian Pharmacy sells Elmiron for $120! I've looked online and found one that was $250 or something like that, but that is as low as I've found it so far. Haven't tried Elmiron yet, because of the price, but $120 would be "do-able"!

[nineteenwinters]

Canadadrugcenter dot com is where I get mine. It's $185 but I get a discount through my doctor.

[Winged1]

Thanks!

$185 is better than $250! Anything helps. I don't have insurance at present.
I appreciate the information. I'm trying everything else first, but as a last resort, I'll start the Elmiron.

[Sharyn]

Elmiron

Try Northwestern Pharmacy.com. It's a pharmacy in Canada. I just got a quote for 100 pills $189.00 + shipping. I take 3 pills per day, so that is basically 1 mo supply.

[nineteenwinters]

Yeah I hear you about every little bit helps. It's even a little cheaper if you get 3 months worth. I can't wait for a generic!

[Winged1]

Is It Worth the Cost?

Since I haven't used it yet, I only want to buy it, at any price, if it actually works. Maybe that's for another forum on here -- but honestly -- is it really worth the price? And if it supposedly rebuilds the GAG layer of the bladder -- why does a person have to take it for years? Just really wondering if I should try the stuff...and I guess I need to read about possible side effects also. I can tolerate a lot, but don't think I could deal with hair loss! ha! (vain, here, I guess) <-----that's me, complaining about hair loss! LOL

[nineteenwinters]

I think it depends on the person myself. I eventually want to be able to get off the IC diet. The only way that's going to happen is to build up my bladder lining. Through a combination of diet and Elmiron that could very well happen. I am basically looking at the fact that 2 are better than 1. My doctor doesn't think I will have to be on Elmiron for life. He's thinking that in a year by bladder will probably be back to normal. From then it will be about eating better than I did 2 months ago and not drinking Red Bull which is what we suspect tore up my bladder lining and using Prelief for any acidic foods.

So for me it's just to aid in recovery while the diet will do most of the work. If I had to be on it for life I don't think I would. Not until there's a generic at least. Some people prefer to just use diet and not the meds but I really, really hate most of the foods on the diet so I'd rather take the meds. I think if I didn't mind the diet the Elmiron wouldn't be neccessary as my body will repair the lining on its own given the correct diet.

Elmiron is not as good by far (which is why it takes so long) compared to the bodys own repair system.

Of course for everyone it's different. I am sure there are some people who have to be on it for a longer period or forever. I was fortunate that they caught my IC early before more damage could be done. So that's an important factor in why my Dr. doesn't think I'll be on it for life. In fact he said (and I agree) that as long as I don't have heavily spiced food, caffine, or alcohol I could probably get away with eating small ammount of like mustard, ketchup, mayo etc. But I am too afraid of having another flare so I am not going to try those for a few months at least.

So in summary, if I didn't mind the diet as much as I do I probably wouldn't shell out the cash for the Elmiron.