Frustrated with Elmiron, it's cost and effectiveness

[musiclover]

Sorry, but I just need to vent my frustration with Elmiron. 5 1/2 months in and it hasn't done a thing for me. I started Cystoprotek and DH aloe a few weeks ago after being totally frustrated with Elmiron. I feel slightly better most of the time since starting those supplements, but still have the feeling that I need to go. And still, how well I feel seems to be directly related taking the CP and aloe even though I keep
faithfully taking my elmiron daily.

I know they say it takes up to 12 months, but even with insurance at $35/month it's not cheap. And it seems there are only a hanful of people on this network that really seem to love Elmiron. How can only a few really benefit from the only FDA approved IC drug?

I'm just totally frustrated with it. And with the fact that I'm still having annoying symptoms. Just feeling very frustrated about it right now.

[vm]

I bet that is very frustrating. I remember wishing it didn't take so long to work when I was in the early months, too. Tough decision of whether or not to forge on with it, huh?

[nottoc4]

I feel it definitely helps me.I have very good insurance and my cost is $11 a month.

[StephN]

I totally understand your frustration. I am in the exact same boat. Elmiron, even with my insurance, costs 60 bucks every two months. I am going on soon to be 4 months of taking it and still haven't seen that it is doing anything. Like you my main issue is the pressure on the bladder and feeling like it is full ALL THE TIME. I will continue to take the Elmiron probably for the full year just to see but if things settle down in the meantime (i pray every day for this) it may be hard to tell if it's the Elmiron or something else I have been trying. Although currently I am taking a break from meds as I haven't found any that work and trying physio, biofeed and natural supplements and of course following the diet.
The stats on the Elmiron don't sound that good as well as the fact that they don't really understand why it works. Seems to me there must be something more natural that would work as well or probably better.

[Glenda2]

I have a $15.00 dollar co-pay with my Insurance for the Elmiron.
90 capsules allowed every month.
They gave me a savings card for 4 times filling it.
So I am on my 2nd. co-pay refill for only $5.00 a Month.

But , this stuff makes me SO Sick.

I think I will have to stop it again.

I hate the way it makes me feel.

Uro doctor said 2 options , Orally , OR , Instills.

I don't like either option to be honest.

[Jereme]

Do you have a mail order option for your RX insurance. I fill my Elmiron that way and it costs me $60 for three months versus $60 per month if I got it from a local pharmacy. Stopping Elmiron is a personal decision, but if you can afford it and it isn't having very unpleasant side effects I'd suggest giving it at least a year or two before stopping it. It does work for some and for those it does work for it works better with time. With that said I also wonder about keeping taking the medicine. I think it might do a small thing like I don't have the bladder feeling sensation anymore, but I do still have some mild frequency and also have the feeling of needing to go most of the time. I also think that it counters the appetite increase from Pamelor. If it didn't do that I may decide to stop, but I don't really like feeling like I'm starving all the time either. I think in the future there will be some better alternatives. I like the research regarding APF and apparently they have found some things that can help with that, at least in the lab setting. I think there will be some better therapies coming within the next five years. In the interim I guess we need to just be patient and try all that is available now and accept that there isn't a cure YET.

[Glenda2]

My Urologist said 3 to 6 months on Elmiron to even notice a difference in my symptoms.

I was barely on it 3 weeks. Made ME Way too sick to keep taking it.

Now I have a huge Bottle of expensive pills and No use for them.

Glad My insurance paid for them. I hate spending money on medication and have it turn out to be something I can't tollerate.

I think I might ask my pharmacist if they could be donated to something like a Senior Citizen Care Facility , for sick elderly patients that can't afford these much needed med's. I would gladly donate them to a worthy cause like this*

[mary124]

I have been on Elmiron since 1997, can't tell you when it seemed to kick in, I do know that the few times that I had to get off of it for surgical procedures that I can tell the difference. It takes a while, be patient if you can; I know it can be expensive, I have a co-pay at the pharmacy of $25.00 a month; its $75 for 3 months mail order, so to me its the same pay. I can't really complain as I take 6 caps total daily which is 180 a month so I know how much it is without insurance.

[dyno]

Yes it does take awhile to tell if Elmiron is going to help you. Usually 6-9 months and sometimes up to a year. For those that Elmiron helps it is a real blessing. I do believe it is under 50% that are helped from it.

That is why it is helpful to know that there are a lot of options to choose from for treatments.

[sofirus]

My insurance does not cover brand name medications. I pay $ 350 for 120 pills of Elmiron. I think it is just madness medication which have so low success rate to be so expensive. Why is it so expensive ?

[musiclover]

Hi all. I haven't quit Elmiron, I just wanted to whine about it the day of this original post. Jereme, funny you mention it because just not too long ago I found out I do get a small discount if I have it mailed, in large quantities. It's still expensive, though. Lately I do feel a little better at least half of the time, but I have credited mostly Cystoprotek and DH aloe for that since directly after starting those is when I started improving. But my hormones make a huge difference and I'm not sure I have that under control yet. Hopefully some day I will be singing Elmiron's praises. Until then I just keep chipping away, taking my dose twice a day and hoping that it's going to work. I haven't given up hope yet!

[dawnja]

Hey All,
I've found this thread interesting, as I had basically given up on elmiron since it didn't seem to be doing anything, and I was constantly forgetting to take it. When I started cysto and aloe, I just quit taking elmiron. Now it seems maybe I should give it another chance, but I'm not sure. How do you all remember to take it since it is not supposed to be taken with a meal? That is always my problem with it. I probably wouldn't forget so much if I felt it was helping. Also, I was losing more hair when I shampooed, no bald patches or anything, but it was scaring me enough to make me quit it.
These decisions regarding medications are so difficult, especially when you are on a number of things and can't tell what is benefitting you or not.
dawn

[Glenda2]

A Great way to remember to take your daily medications > get a plastic Pill Box daily counter.

It has Am , Noon , and Pm holders for any pills you need to take.

That way you Never Forget.

I have always done this for my med's.

Very helpfull.

[nottoc4]

I have had no pain since March of this year .I had Elmirom Instillations done at the time and started back on oral Elmiron.Dr. gave me Impramine too. Since then gradually the Urethra spasms and hesitation have disappeared,the feeling I have to pee right after going pee has gone and the burning around my vaginal opening is just about gone. I am feeling more like my old self and have more energy. I have no frequency during the day but still get up 1 to 3 times at night.
I take Ambien so that helps me fall back to sleep quickly.I also think that Premarin estrogen cream nightly has helped my Urethra and 100 mg of Macrobid at night has stopped the horrible, painful UTI's I used to get.
I had quit elmiron last Sept.,blaming it for some belly pain I was having. It was not the Elmiron but Splenda that caused my problems with the belly. A Colonoscopy,CT scan and IVP all showed nothing. A few months after that I discovered it was Splenda. I don't know why I thought Splenda would be ok...I know Nutrasweet flared me up. No belly pain anymore since I quit using Splenda, DUH!!

[Glenda2]

Many artificial sweetners like those mentioned , do tend to cause gastric distress , which results in Diarrhea. ( For ME it did )