Wow... that is a LOT to have to manage at one time! I have been on Elmiron for about a month and it is supposed to be well tolerated by many people. My nurse has been specializing in IC for a long time and she has had only 2 people had their hair fall out so don't believe everything you read. It is supposed to be taken for at least 6 months to a year to find out if it will help you.

I just started taking an antihistamine (Vistaril) and it is helping so much!! But you cannot take the over the counter ones like Allegra or Zyrtec.. it has to be one that blocks stem cells.

Also.. Vistaril is commonly prescribed for people with anxiety .. this could help you remove some of your feelings of stress, stop the histamine reaction that is causing many problems, and it makes you drowsy (supposed to, I am the exception to every rule!) so you can sleep at night. Otherwise if you do not have bad reactions to the newer classes of antidepressants, Lyrica and a few others like Amytriptaline are showing to work well on pain, better than the pain medicines. They have a really bad affect on me.. I am awake for days and then sleep for days but my doctor said that he has had great success with them. He is very knowledgeable about IC and has been treating it for a long time.

Are you following the elimination diet? This would be important too so you aren't just keeping doing damage to your bladder with highly acidic foods too.

I hope you feel better! I had a really hard month laying on the couch after my diagnosis but am feeling great now! Helps to have a good doctor and support group. Do you have those?

Mary

Mary, I have severe asthma, environmental allergies and food allergies that I believe cause alot of my flare ups. My allergy doctor has me on Clairitan and Singulair. I too am one of the rare people that are wide awake with medications that are supposed to make you drowsy. I can only take medication in the morning. So alot of times, I have to lay on a heating pad or take a hot bath with Epsom salt, baking soda and lavender to alleviate alot of my pain. Can you tell me more about this Visiral? I am not sure what you mean by blocking stem cells. Maybe I can switch to that instead of my Clairitan...

Yes, it is so painful to walk at times. I take the baking soda and Codeine as necessary, hot foot soaks, deep breathing and lying down with my feet elevated. You are not alone in this. Isabelle1954

I am a huge advocate for Elmiron. I've been on it now for over 6 years and it has helped a lot. Don't get discouraged if you don't see a big change right away. It took over 8 months for me to see any improvement at all and for the horrible side effects to die down and it is a medication that works very slowly. The worst thing to do would be to go off of it and then realize it actually was helping because I've heard from other people that did that that the side effects are just as bad and long-lasting the second time around.

What kind of instillations do you get? Have you tried Uracyst? I get Uracyst + lidocaine 1% instillations regularly and they have truly been a life saver, most of all the Uracyst. Between the Uracyst and Elmiron, I've been able to expand my IC diet a lot over the years and that gives an indication that by continuing these medications, things will only get better. Also, I've had 3 cystoscopies in the last 6 years and the second and third showed an increasing physical improvement of my inner bladder which is proof positive that the medications are doing what they're supposed to be doing.

Do you use Prelief as well as baking soda?

- Kat :)

I feel the same way. i am starting month 2 of Elimron. Been dealing with bladder issues many years. So far nothing with Elimron. I hear it takes 2-4 months.

sheri7 sorry you are having such a hard time. when this illness is bad it is the worst,my heart goes out to you.
i had a script for elmiron and ordered it but i never picked it up and my pharmacist was furious. after reading the side effects i got scared. so i can't say. i also have IBS.i had a severe flare that lasted over 4 mtgs i felt like you do. i tried many meds and a few instillations.what honestly helped me the most and brought and end to that flare up was following the elimination diet. than the meds seemed to work after that haven't had a flare up since for me completely removing all carbonated drinks coffee or caffeinated drinks, chocolate ,citrus,tomatoes all every form,any food that causes any kind reaction in your mouth tongue or lips. forming mast cells in your mouth is absolutely causing in your bladder. aged foods, including cheeses,wine. i had no alcohol beer or wine.there are many more on the list. but those are the major ones oh also vit c and b6 hope u feel better soon

I'm feeling like the Elmiron may be the best medicine ever. close to 8 weeks now and i have not had a bad day for a bit now. Im hoping that the elmiron beginning to work. Good luck

Elmiron has helped me a TON! It took a good 4 months before it starting working for me. Don't give up!

how can anyone take elmiron....the cost is off the wall....I cant even afford the price for even a week????Even ADC cost is exspensive....what insurance do you all have to be on that medicine??

Hmmmm no replies on the affordability of elmiron ........interesting

I was on the elmiron and I am not sure if it really ever helped or not it could have. I would have a few months pain free then have a flare up like now when it's so bad the again I can't walk or sit by late afternoon. I do all the above said things soak in hot water and use heating pad which helps so much when I stay very still. I just started last night taking Vistaril and am hoping that it will help me a lot I saw on here that it helped maryh622!
unfortunately my husband lost his job 3 months ago and I am no longer able to afford the elmiron....it cost $600 a month!!! but I'm not sure it's a huge loss. I would take it if I had the insurance but I don't.
I can't go have the instillations any longer a the doctor's office but I have the medications I need because he wrote me the scripts for them. I just have to learn to do them myself.....YIKES!! wish me luck because I am very nervous about it all!!