Anyone else notice this?

[valkay18]

Prior to the Elmiron shortage, I was in a flare for several weeks while on my Elmiron. Then, the pharmacy stopped stocking it for awhile. Once the pharmacy got their new batches in, I started taking it again, and it seems to be working much better. I am not sure if it is a coincidence or not, but I have had several pain free days in a row, whereas, before I had several painful days in a row. Has anyone else noticed this?

Like I said, it could be a coincidence, but who knows, maybe it is not. Just curious what everyone else thinks~~!

[whirleygirl]

You lucky thing!

You are able to tolerate it and have had improved results!! After the shortage, I went without Elmiron for about 6 weeks. I had been taking it for years with no adverse side effects other than a change in hair texture, no hair loss though. I was doing so well on it! Well.... I just refilled my prescription and I am not tolerating it well anymore! It makes me so sick to my stomach I can't take it! I'm so upset as the pain and burning are coming back. I have ordered Cystoprotek and am praying it will work. If it doesn't I don't know what I'll do. I may have to choke down the Elmiron and just deal with the nausea somehow. Damn.

[valkay18]

You are able to tolerate it and have had improved results!! After the shortage, I went without Elmiron for about 6 weeks. I had been taking it for years with no adverse side effects other than a change in hair texture, no hair loss though. I was doing so well on it! Well.... I just refilled my prescription and I am not tolerating it well anymore! It makes me so sick to my stomach I can't take it! I'm so upset as the pain and burning are coming back. I have ordered Cystoprotek and am praying it will work. If it doesn't I don't know what I'll do. I may have to choke down the Elmiron and just deal with the nausea somehow. Damn.

Well, at the time I posted that, I was doing better. Now, I am feeling like crap! I have no idea what is going on with me. I am sticking to the diet perfectly, and am still in lots of pain. I cannot seem to get out of this flare to save my life. I've been hurting for about 3 weeks now, ever since I tried going on a low dose birth control to see if my IC would get better. It seems to have worsened it. I went off that pill 2 weeks ago, and have been in extreme pain. Since a few days after I started it. (I only took it for 7 days.) So, wish I could say I was doing tons better, but that was short lived.

Oh, let me know if the Cystoprotek works. I've wondered if I should add this to my regimen. Though, I've read that some people said it made their IC worse.

[Jinny Jean]

I hope you get back to feeling better soon!

I know that when I tried to take the birth control it made my bladder 10 times worse. I tried a few times with different brands etc too... to no avail. I was sad because I had been on BC ten years prior to this, and never had to worry about pregnancy at all. Anyways, I decided to get off the pill all togther and see if it would help my body regain some normalcy after 10 years of fake hormones. So I went off of it in april... It took about 2 months to notice I was getting back to regular and not having so many bad days, and now its Sept and I feel great most of the time. I know that going off the pill MORE than helped my bladder because it wasn't being bombarded with synthetic hormones anymore and was getting back to MY hormones.

I use condoms now, and feel awesome! Just a thought, possibly staying on the pill is just further irritating your bladder as well?

PS. Just make sure you always discuss everything with your Dr first before making any changes, I am just one that was helped by regulating my system naturally.

Jenn

[valkay18]

Thanks for your response, Jenn! Yah, I think the BC really brought on this flare. I went off of it about 2.5 weeks ago, which was after about 7 days of being on it, and my IC still hasn't gotten back to normal. I've been in pain every day for almost 3 weeks now, and it is driving me nuts. I'm on 4 Elmiron a day, 20 mg atarax, 1000 mg MSM, and am still not feeling better. From your post, it sounds like it took you two months to "recover" from the BC. I am just worrying now that I will never get back to normal. (By normal, I mean IC pain, but not as bad as this!) I am thinking of trying colostrum to see if that helps. I'm a pretty severe case of IC. Based on your experience with Colostrum, do you think it would help? How long until it started working for you? Also, what brand do you use?

[Zygala87]

I am dumb I guess. I don't understand why the Elmiron shortage. Was it missing something therefore inaffective? I just had a HYDRO which always has helped me in the past. Not this time. I'm still taking the "old" Elmiron as I had enough for 3 months. I wonder if when it is time to reorder it might be like the elmiron I took for years and better then what I have now. I know I'm lucky I am one with no side effects from using it. As always I'm trying to figure out why I'm feeling on the edge of a major flare every day. I was doing very well up to about six months ago. Part of the miserable condition, always looking for answers and never sure what the heck is causing problems. Hugs to all, Ziggy

[emilypaige]

Elmiron after the shortage

I have been taking elmiron for many years with great results and no side effects. During the shortage I had to get a one months supply of elmiron at another area pharmacy to which I was referred by my pharmacy. The next month my pharmacy was able to get elmiron. However for the last month I have been miserable. The elmiron doesn't seem to be working. I have been taking Azo in addtion, which I really don"t want to do. I spoke with my pharmacist to see if the formula had been changed, which he said it had not. Has anyone else had a similar experience since receiving a new perscription of elmiron. Thanks Officemom

[Zygala87]

I just reordered Elmiron and Praying the new ones will be of help. Old ones seem like duds as I said above. Something stinks about the shortage and all the problems. I'm not a distrustful person but I believe there is information we never received. I hope any problems are over and we start to heal and receive relief soon. If any old Elmiron were still in the pharmacies they would (I think) send that out to us first. Healing thoughts, Ziggy