Elmiron Shortage

[chhhb]

Wow, I couldn't believe it when I got an email today from the ICA announcing the shortage of Elmiron for the next several months! I have depended on this drug since 1999. It's the ONLY thing that has ever helped me with my IC. It took me from being a person who was in pain with IC symptoms almost all the time to a happy, high functioning woman 90% of the time, until this past January, when I went into a flare that has yet to subside. Doctors have not been able to get me stabilized with instills or diet. I'm now wondering if there was problem with the product being incomplete during the manufacturing process, which is what they are attributing the shortage to, maybe this problem has going on for a while before it was discovered. I've thought about this more than once, that maybe the Elmiron I've been taking this year has been ineffective because of this same problem. I sure would explain why I suddenly began to flare and have never stopped! This has never happpened to me in the twelve years of taking Elmiron. I've had flares but nothing that has lasted anywhere near four months. I have about 60 days worth of it left and they're saying it could take several months before Elmiron is readily available again. But, now I'm wondering if the product I currently have is an effective batch. I've thought so many times over the last few months if maybe the Elmiron I had wasn't a good batch or something. Now that may really be true. There's no way of knowing how far back this problem may go.

Has anyone else out there who has taking Elmiron with good results until recently and you've gone into a flare that has lasted quite a while? Just wondering.

[Zygala87]

Yes I've had the same problem. Very upsetting. We need more information. Hug, Zuggy

[eyeliner128]

I was diagnosed when I was 12, took Elmiron 100mg 3x day for 2 years with DRAMATIC improvement. The side effects then became too bothersome, and I felt so much better I stopped it. When I was 17 (about 6 months ago) my symptoms began to come back, so I re-started Elmiron, but it doesn't seem to be working as well this time. I figure my body is either resistant somehow (I've always quickly become resistant to meds) or it hasn't been long enough.

[chhhb]

I was diagnosed when I was 12, took Elmiron 100mg 3x day for 2 years with DRAMATIC improvement. The side effects then became too bothersome, and I felt so much better I stopped it. When I was 17 (about 6 months ago) my symptoms began to come back, so I re-started Elmiron, but it doesn't seem to be working as well this time. I figure my body is either resistant somehow (I've always quickly become resistant to meds) or it hasn't been long enough.

About two years into taking Elmiron, I felt so well that I thought maybe I could cut down or stop. Didn't work! I realized then how much Elmiron was helping me and basically keeping IC symptoms way down. I've never had any kind of bothersome side effects from it at all. Just can't figure out why after 12 years I'm in what seems like an unending flare for over three months now. I pray I go back into remission at some point.

Maybe it just hasn't been long enough for you yet for the Elmiron to kick in. I've read recently that they encourage people to keep taking it for up to a year sometimes before giving up, that for some it just takes longer. Good luck. I hope it helps you soon.

[wolfaleena]

i feel so badly for everyone about the elmiron shortage. Like we don't suffer enough with this disease.

I have been on elmiron since they first approved it by the fda

I am on a ton of other drugs as well i have very severe IC symptoms...

i read that somone posted that she went off of elmiron because of hair loss. I was wondering if anyone else had this problem.
Cuz i have had this problem for YEARS,,, and my doc has not taken me off of the drug.. i hate the hair loss. but fear going off the drug... however, now since the shortage.. Medco pharmacy just sent my RX back to me.. They don't have any. so i guess i will see what happens now.

My heart goes out to all of you that are helped by the drug. i wish there was some way that someone would cure this disease. it is awful!!
Prayers going out to everyone.

[BabyPaws1186]

Elmiron Shortage

I can't take this anymore! I'm having horrible flares since this shortage !
I have been on Elmiron 4 times a day for almost a year now; it never provided me any miracles, but now I can only take it once a week through my doctor's instills, that's all that I have left. I'm bleeding and clotting from my bladder horribly as well... the blood is practically black (sorry to be so descriptive).
I just took a Percocet, then did a rescue instill on myself, and put some Nortriptyline cream down there.
I am so outraged though because this is not a common medication; well, it is for us but we are a small percentage amongst so many other chronic illnesses.
On a sort of humorous note though... wouldn't it be great if they made an app. for smartphones where you can track Elmiron, lol.
We need to be there for each other, this is a damaging time for us all. And like I said, Elmiron never provided any major benefits for me, but it did help with the shedding and bleeding of my bladder.

Big hugs to all<3
~Margaret

[123456]

I actually called the makers of Elmiron and they are still making the drug, it's just not enough to meet the demand. What happened was that there was a bad batch that could not go out to stores. So, if you can cut down or stockpile some up, you'll probably be okay. They are NOT discontinuing the drug and are trying to get things back online for us.

[GayleK]

I was told basically the same thing when I called. She said they are still going to make it and they know there is a lot of misinformation out there. I was told at my pharmacy they had stopped making it for good so was relieved when she said that was not the truth.

[wolfaleena]

Margaret

I can't take this anymore! I'm having horrible flares since this shortage !
I have been on Elmiron 4 times a day for almost a year now; it never provided me any miracles, but now I can only take it once a week through my doctor's instills, that's all that I have left. I'm bleeding and clotting from my bladder horribly as well... the blood is practically black (sorry to be so descriptive).
I just took a Percocet, then did a rescue instill on myself, and put some Nortriptyline cream down there.
I am so outraged though because this is not a common medication; well, it is for us but we are a small percentage amongst so many other chronic illnesses.
On a sort of humorous note though... wouldn't it be great if they made an app. for smartphones where you can track Elmiron, lol.
We need to be there for each other, this is a damaging time for us all. And like I said, Elmiron never provided any major benefits for me, but it did help with the shedding and bleeding of my bladder.

Big hugs to all<3
~Margaret

Margaret BabyPaws1186: Do you usually have that bleeding like that? Sounds terrible. I am so sorry that you are going through so much pain... we all can empathize with you, since we have either been there or are going through it in respect to the pain you are feeling.
Do you go to a pain management doc for your ic pain? I do... and believe me it has helped with the pain. not gotten rid of it but brought it down a few notches.
With respect to the elmiron shortage. It is really a shame that there is so much misinformation going on. I feel that the company should at least post or mail to the pharmacies a concise statement of facts so that it can be disseminated to the public. It is a travesty that we are left in the dark about the situation. It really adds stress to an already awful disease to cope with.
I also go to a pain management counselor and have learned different techniques of relaxation to deal with anxiety etc. from chronic pain and illness. I have lupus and fibro as well as severe IC...
If you are in severe pain I would approach your urologist about it and see if there is a pain management doc that u can be referred to.. Most urologist will only prescribe a limited pain killer, since narcotics are heavily controlled.
Best To all .. you are all in my prayers...

[JenG]

Elmiron shortage

I just now found out that I cannot refill my prescription. Nobody bothered to tell me ahead of time, not my doctor or pharmacist. I have been refilling my Elmiron at the same pharmacy for over 5 yrs. My daughter also takes it and we both ran out at once. If anyone would have given us a heads up then maybe we could have cut our dose down rather than going cold turkey! When I went to pick up my refills the pharmacist looked over and said " oh yeah, you can't get anymore Elmiron for a while. I don't have any idea how long." He didn't even call to tell me when I called the refill in, how kind and thoughtful everyone is. I even called the dr and they said that they were sent a notice about the shortage last month. Thanks for telling your patients!!

At times like this I really realize how alone we are. We have to pull every bit of support out of our drs, they don't go out of their way to help. I should have logged onto the ICN sooner, at least all of you are always there!

[ICNDonna]

Some people are getting elmiron out of Canada via the internet --- you might want to check there.

Donna

[123456]

They are still making Elmiron. I suggest having your pharmacist or you call other pharmacies in the area. I'm sure that some still have Elmiron.

[123456]

I just called my pharmacy and they still have it on the shelves and are saving me a batch to pick up on Sunday (when my insurance will pay).

[wolfaleena]

elmiron

I just now found out that I cannot refill my prescription. Nobody bothered to tell me ahead of time, not my doctor or pharmacist. I have been refilling my Elmiron at the same pharmacy for over 5 yrs. My daughter also takes it and we both ran out at once. If anyone would have given us a heads up then maybe we could have cut our dose down rather than going cold turkey! When I went to pick up my refills the pharmacist looked over and said " oh yeah, you can't get anymore Elmiron for a while. I don't have any idea how long." He didn't even call to tell me when I called the refill in, how kind and thoughtful everyone is. I even called the dr and they said that they were sent a notice about the shortage last month. Thanks for telling your patients!!

At times like this I really realize how alone we are. We have to pull every bit of support out of our drs, they don't go out of their way to help. I should have logged onto the ICN sooner, at least all of you are always there!

JenG: I understand how terrible you feel about this! It makes you feel sort of abandoned. and Yes, i agree with you about the lack of concern from the doctors offices, the pharmacies and the drug company itself!! Like it is not bad enough that we suffer so terribly with this awful disease!
Call around to all of the pharmacies in your area that your insurance will cover. Even if the pharmacy is not near you, possibly if it is a chain pharmacy they could send it to your nearest pharmacy or even if you find an out of state pharmacy that has some elmiron, maybe they could ship it to you. i lucked out and found some at my local CVS after my mail order, MEDCO, informed me that they couldn't fill the script. I was going to go without it for awhile and see if my hair started to grow back in the areas that it got thinner, but i don't want to find out the hard way by my bladder..

Try calling around and yes remember you are NOT alone in your suffering and feeling abandoned. Best of luck in finding some.. i think you will if you call around.. some pharmacy has got to have some for you and your daughter.
I'll say a prayer for you guys!

Hopefully, the shortage will not last too much longer. I think that we all should start bombarding the drug company with letters and phone calls.... seriously .... just to let them know what this is doing to us!