6 months on Elmiron

[SoCalJen]

Feb 1 marked my 6 month "anniversary" on Elmiron. I wish I could say that I am doing better. In addition to Elmiron, I'm doing weekly PT and PTNS. I'm up to six treatments on the PTNS and... well, I don't have much to report.

Some days, I feel exactly where I was seven months ago when I was originally diagnosed. Few days are tolerable. Most times, however, I feel sad and a little desperate. I'm giving this everything I've got: mind, heart and wallet (PTNS is not covered by insurance). I've done six instills and experience relief for a few hours and then, wham: the throbbing/pressure/discomfort returns, as awful as ever.

It's hard to focus at work, extremely difficult to study for class and becoming increasingly more and more difficult to keep hopeful in all this. Sometimes I think I could end California's drought by collecting my tears. Seriously. It's like a bottomless well.

Still on the diet. (Pretty religious about it). Still trying to stay calm. I write this only to keep some sort of chronicle of this terrible journey. Every challenge I've ever faced in my life all rolled into one pale in comparison to the last six months.

Everything that I once believed defined me (running, wine, good food with friends, travel) is not possible for me anymore. It's like a sick joke. I'm still really struggling to find the meaning in all this and keep "listening" to whatever it is my body is trying to tell me.

At my worst moments, I feel really broken and begin to question my value to society. The thoughts scare me because I am just not prepared to deal with them.

I want to say something positive. I do. I do. I really do. But it would feel phony. The best I can muster is to say that my plan is to keep going and keep trying any and all possible measures that might bring relief...because it's all I can do.

[ICNDonna]

Sometimes it's very difficult to find out tiny steps toward feeling better. Have you tried keeping a food/drink/voiding diary --- sometimes that will help identify a trigger. And...elmiron can take up to six months or longer to become effective.

Sending gentle hugs,
Donna

[marar76]

I'm so sorry you're still feeling horrible! Ugh! What is your Uro saying? Have you tried an anti-anxiety med. to help with this. I felt guilty taking a small amount of klonopin at first until my best friend told me her vet gives her cat anti anxiety meds for the cat's IC. I only take it at night along with 10mg. of elavil so at least I can sleep. Are you able to sleep? I wonder If you could give elavil one more shot. It's helped me. I have what seems to be very similar symptoms to yours. I have no pain just a sometimes maddening sensation of having to pee. I go every 4-5 hrs. even though I feel like I could go, I hold it. I'm angry with you! I had a wonderful life here in NYC, going to dinner, grabbing coffee and walking with my young daughter to the park, laughing, how about just being comfortable in my body. I just wonder what your Uro is thinking about all this? Anyway, I'm rambling. I've been thinking about you and was hoping your lack of posting was because you were doing well.

Rachael

[purpleviolet]

switch pain meds

dear socaljen,

If prosed and flexeril don't help that much with pain, would your doctor consider switching to something more strong? I'm not for taking drugs if they are not working. Flexeril didn't work for me but valium does (only for flares, however because of its addictive nature.) Hope you can find something that works better for you.l I am on elmiron, too but I had stopped it for awhile to see if it was causing heart palpitations, but I don't think it was so I started again and now it's like I wasted the 3 months I was on it.

[sailawaygrl]

Don't give up. I know it is hard to deal with and you feel like there is no end in sight. I can remember my first year of medication and I thought I was never going to have a better life. It honestly took a year for me to see the positive results from Elmiron. When it did finally start helping, it really helped a lot. I also have used my elmiron in my instills which I believe helped a great deal.
I know this doesn't help much but just know that others have been where you are and made it through to better days.

Wishing you the best,
Sandra

[suzannes]

SoCalJen,

I tried all the things you were on. I didn't start to feel better until I was on Elmiron for 1 year! I feel good most days, I still can't run and I think I miss that the most. I don't know if I'll ever run again. I walk now and am satisfied with that if I'm not in pain. Keep plugging along, you will feel better one day.

Suzanne

[SoCalJen]

Suzanne, Sandra, Rachael, Donna and Purple Violet,

Thanks for your thoughts, ideas and the encouragement to keep going with the Elmiron. Dr. Parsons is/was my uro. So far, his predictions about the Elmiron haven't come to fruition, unfortunately. Also, he books six months out for an appointment. It's not especially convenient to contact him and I don't feel like I'm being, well, what is the right word here? Monitored? I don't feel like there's much of an interest in me. I'm sure I'm not alone in thinking that bedside manner can make a huge difference in the degree of confidence I feel about my treatment regime. Still, I saw him in Jan. and will see him again in July to "check in."

For PTNS and the instills, I have been going to another doctor mentioned on the ICN site, Bruce Kahn. He's actually a gyno w/ and interest in IC and he worked with Parsons on a project in the past. He wants to get through all nine instills and then re-group. I'm so sad the PTNS and the instills don't seem to be working for me. I just had my seventh instill this morning with not a whole lot of difference. Maybe some relief right afterward with symptoms recurring in a few hours.

Some over the counter things I am thinking of adding to my treatment include aloe vera pills, Cystoprotek and corn silk tea. I'm also investigating year-round birth control. I hate to think of wasting my time and money on these measures when the front-line treatments aren't working. On the other hand, I have absolutely nothing left to lose. I suppose it's nice to have things left to try. I'm really emotionally drained from these past seven months working at this. I honestly don't understand how people suffer for years and years. They are much stronger people that I am. That's for darn sure.

Thanks again for listening and for providing a place to have this frank discussion. I hope everybody is feeling good and taking advantage of every single second of it!

[suzannes]

Jen,
I forgot to write that I also upped my dose of elmiron to 500 mg a day, maybe call Dr. Parsons and ask if this is ok.

Suzanne

[Linda May]

I am so sorry about your pain and you are worthy just putting your thoughts and feelings on this forum reminds some of us thatwhen we feel better it can change in an instant. your uro needs to try other methods perhaps, staying on this forum gives you knowledge we are all here for each other. We need a group hug and prayers for a cure to this desease. I believe your uro just has not found the right treatment yet. Keep the faith and erge your uro to try something else for you God Bless You Sister.

[flowerangela]

Jen,
I am a 24 yr old female new to this and honey I can relate to your post.All the fun things I used to do before this..cant do.It hurts to walk. I'm in bed most of the time dealing with the pain or sleeping.Every bad experience in my life also pales in comparison to this.I was planning on starting a new job,the offer fell through.So I'm concentrating on maybe doing a home correspondence course on becoming a florist.My fear is I wont be able to do anything career wise and will end up having to file for disability.Everyday is struggle with this.I didnt have a high pain tolerance before and I surely dont know.My plan is similar to yours.. trying EVERYTHING I can to get rid of this...and move on with my life.I am only on my first instill dmso rimso had it yesterday.like you said it helped for a few hours but now the pain is back.theyre starting me on elmiron monday but i have no idea if that will help. heard it takes awhile to feel the effects. im so upset i sent myself get well flowers. its a v-day/get well gift to myself.to maybe make myself feel better. i want to be happy again. im on antiaxiety/antidepressants but they were for other things that had happened in my past not for this. im considering counseling. im really at a loss for what to do i know exactly how you feel. you can email me at [email protected] and we can exchange instant messenger ids or something. sometimes i feel like the private messaging feature on this forum isnt enough. we need IM/Chat.I know theres a chat on monday nights but thats not enough,IMO.

[SoCalJen]

Hi FlowerAngela,

Thanks for the post and for reaching out to share your experience. It was really interesting to me to hear that you are thinking of contacting a counselor. Like you, I have been thinking of talking with a mental health professional. However, I've been reluctant to take that step out of fear that it may mean I've lost control over this. The longer this goes on, however, the more I think my emotions are outside the scope of what I can deal with. I really admire you for considering going that route. I think it's a real sign of maturity and wisdom. You've inspired me to investigate that, so thank you!!

I'm sorry I don't have any tips about reducing symptoms to share in return. But, I really want to tell you this: please don't let your fear of going on disability in the future keep you from chasing your dream of becoming a florist. Maybe I can offer one weird little tip about keeping going when your body is conspiring against you. Here it is: I ran my first marathon when I was 24 (way before I had IC). Prior to training for the race, I had only run 7 and 8 milers on my best days. Once, I'd run a 10 and I couldn't fathom running any more than that.

While training to get up to 15 and then 20, I would use a trick to keep moving forward when my body had called it quits and was hurting. I am using the same strategy with work/school and IC. Here's the trick: look at a point ahead of you in the future (during my runs, I would use something like a lamp post or a bench about 1/4 mile away). The trick is to just get to to that next point. Don't think about anything else except reaching that point. Don't think about what comes after that point or how long it will take to get to that point. Only think about getting to that point.

When I open my eyes everyday and want to die because the sensation is still flipping there, I think, "Just get to your desk at work. Just get to your desk. Just get to your desk. Just get to your desk." Once, I'm at my desk, I pick another point in the future, and that's all I think about it. Nothing else. I say to myself, "Just write the memo. Just write the memo. Just get this memo done." After that, I pick another point in the future. At the end of my week, I have the satisfaction of feeling like I got through another one. I don't have many things to celebrate right now. But, every Friday, I get to say, "Screw you, I.C. You are not keeping me from work or school."

Prior to having IC, I completely took for granted what a breeze it was just getting ready in the morning. I thought a bad hair day was a problem. Ha. Now, it's like a major motion picture just to get out the door. Still, I am using my marathon trick to get through my days and it's working for me. Seems to be the only thing that is!

I hope you're feeling better these days!

[sailawaygrl]

Hi Jen,
Sorry you are having the problems you are. I think your idea about seeing a counselor is a fantastic one, I went to see one for a while and am seriously thinking of going back again. I did want to mention a few things to you, I noticed you said you upped your elmiron to 500 a day. I take 400 a day and I think that is pretty much the maximum that Drs give. I'm afraid you might run into trouble with your insurance also, my insurance had to confirm the 400mg daily with my Dr since the usual dose is only 300mg. When you go to refill they will probably check with your Dr and if he doesn't know or approve of you upping the dose it might cause a problem. I know if you are like me the last thing you want is anymore problems!! One other tip I wanted to share is about trying out new treatments. I hope you find one that works for you, but I have seen other's recommend this and I agree. You should try one thing at a time and give it time to work, if you start several things at once and see relief you might end up taking meds that aren't necessary and none of us want to do that.
I hope you find some relief soon.
Sandra