Relief

[SueQ]

Hi everyone. So I'm coming up on my one year anniversary of my diagnosis. And I remember laying in bed every morning praying that whatever I had would just go away. I remember finding this site and reading everything I could and just praying it wasn't what I had. I found out in July that I had IC - thru hydrodistention and laprascopic surgery.

The good news is I have been in remission for a good two months and I just keep feeling better. Actually started excercising again without any real side effects. I can eat food again without my bladder cringing.

I've been on 300mg of Elmiron and Detrol since August of last year. So when they say it takes 6 months to work - they are right. I've just kept on taking the pills 3 times a day faithfully. I know this won't work for everyone but if I encourage just one person to do this and it makes a differance - thats good enough for me. And I know I will have relapses again - but for now the future looks good. I think the best part is knowing that even as I get flares - they are not forever.

I hope any of you out there reading this, thinking your life is over will be encouraged. The site has been a lifesaver to me.

Happy Valentines Day to everyone!!!

[tillysav]

SueQ,

Thank you for posting about feeling good and hanging in there. Hope your remission last forever :)

I have been on Elmiron for almost 3 months. Your post was soooo encouraging to me. It's good to hear success stories. It gives hope!

Sometimes I wonder if Elmiron is really helping and then realize I haven't given it enough time.

So glad you posted today :)

Hanging in there, Tilly

[vm]

That is soooooo GREAT to hear!!!!!!!! Elmiron has really helped me, too. Thanks so much for sharing the good news. :)

[jaime15]

That is fantastic to hear!!
Elmiron has helped me as well.
It really does take time to figure out what works best for each of us.
Continue your remission and live it up!! :)
Hugs!!

[kadi]

Thank you so much for your positive post!!!!!! I've been taking Elmiron for 7 weeks.

I so much hope the Elmiron will work for me too...

[mayray518]

Always glad to hear when someone gets relief.

[STACYO]

Thanks so much for posting such an encouraging
message. Since I am new (diagnosed Jan 7) I
find it very uplifting. You sound like me,
praying every day this will GO AWAY. I also
am taking Elmiron,Detrol LA and the DMSO/Heparin
instills. My hair is falling out, and symptoms
are a bit worse, but I am still hopeful.

I hope you continue doing well, adn thanks again
for your possitive msg

Stacy

[lori hehl]

i was just told i have ic as well. i have been on elmiron for 3 1/2 months. how do you take your pills? Do you take it w/ food or w/out. i'm not feeling better but i am very hopeful i just need to give it more time. i hope you coninue to get better. lori hehl

[October]

Hi Lori,

I started on Elmiron just 2 weeks ago. I was advised to take it without food because that's what the drug trials were based on. They say that if you take it with food that it will bind to the food and may not get to your bladder. While this has been very inconvenient(either 1 hour before meals or 2 hours after) I'm trying to make it work. I usually take 1 pill mid-morning, another mid-afternoon and another before bed. I'd be interested to know if anyone has had any other method of success.

October

[kadi]

Hi, I take the Elmiron when i wake up in the middle of the night to pee (whenever that is), mid-morning , & late afternoon (1-2 hours before dinner). I figure that stretches the coverage out over 24 hours rather than just my waking hours and since I'm then drinking H20 in the middle of the night - it's reduced the pain I used to wake up with.

One good thing, I guess, is it's cut down on my snacking!

[deback]

I've had excellent results since early December when I started taking 1000 mg of Quercetin and 1500 mg of Glucosamine/Chondroitin/MSM each day.

I quit taking Elmiron about a week after I started taking these supplements and haven't felt the need to take it since then. I believe these supplements work just as well (or better) than the Elmiron did, and they are much cheaper and also help the minor arthritis pains that I used to have in my wrists, feet, neck, and lower back.

When I started taking Elmiron in June 2002, I noticed that it was helping after about two weeks (drugs usually affect me quickly). I took it for about 18 months until I found out about the Quercetin and Glucosamine/Chondroitin combination at algonot.com and decided to try it.

My best to all!

Deb

[MakinIT]

I kinda go with Debeck ...so glad that Elmiron works for those it works for but I was miserable on it. I take the same blend of supplements she does...not as much Querciten because I also take atarax and don't want to much happening as far the anithistimine approach goes. I'm just finally getting my hair to approach normally after the clumps I lost on elmiron..."Shudder"....
I am really happy for those whom it works for though. I'm so allergic to stuff, I'm not surprised it didn't work.

Tracey :p

[Pristine]

The first week of March will be one year since my first Hydro and IC diagnosis and since i got on Elmiron. I'm not sure its whats helped me the most but I've had no bad reactions to it so I am definately going to keep taking it. Anything is worth a try. I think the Hydro/bladder retraining has been the best help and just me buckling down and telling my bladder hey i'm in control of you and not the other way around lol

[Aspencad]

I just finished my first of 4 bottles of the Algonot cystoprotek 5 in 1. So far have not felt or seen any differences. I diagnosed myself several months back with IC. My uro & neuro seem to have communication problems regarding setting up a urodynamics test. Suppose to take place months back. Have called both several times but all I get is finger pointing and excuses. I figured it really does not matter if I do have IC there is really nothing they can do anyway so I got a little proactive and started on the cystoprotek. Not really interested in losing my hair or other possible side effects (may or may not occur) of Elmiron. I currently enjoy a beautiful full head of it. I am not going to make any further calls to my uro or neuro until I finish all 4 bottles to see if they do help. I would have to agree with the above posts regarding it alleviating other arthro. pains. I did have a knee that continually bothered me and since I have started on the cysto it has stopped. Prelief had the exact opposite effect on me than most folks. I started on it and I immediately went from getting up every two hours at night to every hour or sooner. I stayed on it and finished 1 whole bottle. The second I came off of it I went right back to getting up every two hours. Not sure what was going on here but since I really do not have any real bladder pain I stopped the Prelief.

[BIRMANGIRL]

How great to see all this info. on your experiences w/Elmiron and Cysto-Protek, here - just what I was hoping to find!

I've been on ELMIRON for over 7 mos., now and just noticed a big difference around Christmas/New Year's...as others have mentioned, it really DOES take that long to work.

Not only that, but just recently I'm <even> tolerating the capsules, too - whereas prior, I had to empty the med into a glass of water. SO much more convenient, when you're out of the house trying to do errands, etc.!

Tried it twice prior, in years past but for anyone struggling with side effects, all I can say is it's worth trying to stick with it and go the extra mile.

Last time around, I was nautious 24/7 after 8 mos. or so and decided to stop Elmiron indefinately (did DMSO, instead 1-2x/mo. for 2 yrs.); now I'm on a "reduced dose" of 4 (vs. 6) caps, that enables me to tolerate it, AND get this: it's all thanks to a post I read, here in the IC Chatroom! grouphug kissing angel

Incidentally, the Algonot Plus and Cysto-Protek also helped my knee pain, tremendously - a wonderful, added bonus.

For all of you who are either considering Elmiron, have only been on it a short time or are currently struggling with side effects, I can only say that for me, I wish I had known years ago what I know today...

Flares pass so much more quickly, now and I tolerate more types of foods more frequently, than on DMSO, etc. - a real God-send. :D

PS - The only part I don't like, is the apparent hair loss :( - something I cannot afford, having thin hair, as it is. HAS ANYONE OUT THERE EXPERIENTED WITH ROGAINE FOR WOMEN, MINOXIDIL or other products, and found any success in countering this side effect?

* Liked the sugg. of taking Elmiron during middle- of-the-night voids!

[TerryEllen]

So thrilled to hear Elmiron is working for you, just started it on Wednesday. I do feel like life is over at the moment, the flares really have me in the dirt. Tonight's was the worst ever...do they get progressively worse? Maybe I don't want that question answered.

I'm concerned about the hair loss...mine is thinning already as I get older. But hey, I'll wear a wig if I can have my life back..

[Alexa]

SusieQ, thanks for posting this encouraging message! Elmiron worked wonderfully for me too, I'm glad you found relief! grouphug

Alexa

[BIRMANGIRL]

I wouldn't say that flares get progressively worse - esp. if you are on Elmiron, now. The impt. thing, is to think "long-term" and stick with it as long as you can. From what I've heard and read, it's about the best treatment out there, in the long run. If you are one of those who do well w/meds in general, perhaps your IC Specialist can recommend "additional" meds or therapies until the Elmiron takes full effect. (Personally, I don't tolerate most other drugs/side-effects, well.)

The first time I took it I knew virtually nothing about this disease/nor how the drug worked - hence I stopped it prematurely, with my 1st Uro's approval (and NO alt. med.!!!) In that circumstance, it DID get progressively worse. My diagnosing MD did not even give me a restricted diet to follow/nor refer me to the ICN/or ICA. (*At the time, I was highly preoccupied with another disease that plagued me, so I wasn't exactly pro-active as that had my FULL attention.)

Anyway, I'd say that in general a careful diet and keeping your urine diluted (I was told that mainting a "light yellow" tone is desireable)will go a long way in getting you through this period. I also exercise every day for added pain management (walking, mostly).

All the best! :)

[BIRMANGIRL]

Hi Alexa -
Just read your pt. story and was encouraged by the "extent" to which you've had success w/Elmiron :) (as I'd mentioned, it's JUST started to turn things around for me, recently)...

If you're willing, would love to ask you a question or two about your experience via
email(RONAL10@JUNO.COM).

[Alexa]

No problem :) I'll send you an email.

Hugs,
Alexa

[kelly McC]

It gives me sooo much hope to hear a positive side :) ! Gives me strength and encouragement that each day is a new day and you never know what it may bring !
Thanks for sharing
Kelly

[leatha]

Deback,
which algonot combination are you using?
i was going to try the cystoprotek but see that some have
had flares from it, so dont know if i should go with the original
algonot plus. i am very new to these boards, and hope this will find you, so i can get an answer. thanks!

[Zipper]

I'm taking cysto-protek and have noticed only positive changes, no flares. They say if you experience a flare just freeze the capsules, their digested differently that way.

Good luck,
Decnie

[christine_995]

I am so happy to hear that you are in remission. I have just recently been diagnosed 3 weeks ago. I am on Elimron also and am really hoping this will help me as it has helped you. When I read stories such as yours it makes me feel as though there is a light at the end of the tunnel and if I just keep going there will be a time when I too feel relief. Your story has given me strength just knowing that for myself there will be a time when I too will be out of pain. Celebrate life and thank God for your remission. I wish you the very best. I am really happy for you!

Hugs. Christine.

[ljl765]

I'm so happy for you, while Elmiron didn't work for me..It's so nice to hear something worked for someone else. A good attitute helps too, further proof of the power of positive thinking.

[jerry westgarde]

I am also a believer in Glucosamine and some of the antioxidants. I have used 'Recovery' a product from Biomedical Labs, and it has helped me with my IC. I also take 1000 mg of quercetin daily, along with the prescribed amount of Recovery. Recovery is MSM 1000mg fructo 750mg glucosamine 750mg coral calcuim 500mg and nutricol (their special formula) I have used recovery for the last 1 1/2 years, and it also fixed my bursitis. www.BiomedicalLabs.com On the down side I have been in a flare the last week, having consumed a small bowel of hot chili, with tomatoe in it. I took prelief afterwards thinking I would be O.K. and was I ever wrong. I ended up going to Emergency.
I did try algonot, but only for a month and no success. I plan to do elmiron in the future but with bleeding as a side effect with the last two attempts, I will cut back the dosage and have the doc moniter my urine.

Sunny

[kadi]

One thing about the Cystoprotek. I had a horrid flare & migraine from it. Took just 1/3 dose for only one day, but felt rotten that night & the next day and a half. Then I forgot about it in the back of the fridge for 5 months.

Just had allergy testing done & discovered I'm allergic to shellfish and fish. Guess what? Cystoprotek is made from shark cartilage & has a caution on it about shellfish allergy. Mystery solved...

[bluebell]

Hi, I just wanted to let everyone just starting Elmiron to stick with it for at least a year. I was diagnosed last June by hydro and placed on elmiron 3 @100 mg per day. At that time I had bladder pain, along with urethra pain and burning, frequent urination and no sex life. I was reluctant to try the Elmiron because of all I had heard. I did have a slight thinning of the hair and some nausea the first few weeks, but after that no real noticable side effects. I went on the IC diet and found Soy and tomatos to be my main trigger foods. After about 6 months on the diet and Elmiron I began to see a real difference in how often I felt really bad. After 9 months I started adding some foods back to my diet. I still have problems with tomatos but if soy is further down the ingredient list i can usually eat a small amount of it. But there is hope that you will feel better with this medication. I know it does not work for everyone but it has been a life saver for me. I still have flare days, ususally related to my monthly cycle, but for the most part I can live a happy life, watching what I eat is much better that rolling on the floor in pain, and even the sex life has improved, I found that an understanding partner is the most important medicine for that part!!!! I hope that reading this gives some of you who are just in the early stage of learning and dealing with this disease some hope for the future. As for taking the Elmiron, at first i tried to do the empty stomach thing but they made me sick at my stomach, so i usually take one with breakfast, usually a few minutes before I eat, one mid afternoon and one at bed time, sometimes i forget the afternoon one and take 2 at bedtime. My dr. says that the empty stomach thing is how the trials were done and that she doesn't think it really matters as long as it gets into your system, she also put me on Zyrtec for the first 6 months to help block the histimine receptors while the elmiron got a chance to work. I hope this helps and that it is not too long. God bless all of us suffering with this disease.

[sleepyangel30]

so happy for you bluebell, my sex life has approved as well. I have no problems with sex anymore!:thumbsup: I'm thinking of getting back on Elmiron again. I may give it another try.