Elmiron Forever ?

[ScottR]

Has anyone ever been cured by using Elmiron and been able to stop taking it ?
My IC symptoms have declined rapidly just from radically changing my diet and taking PreRelief. My night time frequency has gone from every hour to 2 and 3 times a night. I am very leary of taking a powerful drug if I may not need it in the long run. Any thoughts from anyone ?

Thanks,

ScottR

[sydney42]

I am very interested in this question also. I guess my question is more Elmiron now? I am getting good results with diet modification, prelief, and ibuprofen/pyridium for pain relief. How have people decided whether to go on Elmiron or not? Is it possible to be "cured" and be able to eat tomatoes again??? Ah, wouldn't that be great...

[Annie2]

Complicated question with many answers! I'll do my best to convey my understanding and ask others to jump in here and help. This is so difficult to address because we still have so many unknowns, research is gradually teaching us more but there is so much about IC we do not yet understand.

Remissions can and do occur. Symptoms can go away for a period of time and people can go back to normal diets, activities, etc without symptoms. Remission can last for a few days, a few weeks, months or even years. I do not believe we yet understand why remissions occur...only that it can happen.

Elmiron curing IC? No. It is not a cure. As you probably know, many believe Elmiron works by slowly helping to replace the damaged lining of an ICer's bladder. If you stop taking Elmiron, the lining no longer receives this benefit and symptoms most likely will return. Most consider this to be something that, if it works for you, will be needed indefinitely or until a cure is found. Some here have posted that they had success with Elmiron but, for one reason or another, had to stop taking it and their symptoms did return. I have also heard of a couple of people who were feeling good, stopped all meds and were ok. I would assume these people are in remission. Cured? Hmmm...a matter of opinion. If problems return at a later time, obviously not cured.

We know we are all very different in our symptoms and in the way we react to various meds and treatments. Many, in fact most of us, do find meds or treatments that work for us and allow us to return to fairly normal and happy lives. Sometimes the thing that helps is Elmiron. Sometimes it is another med, combo of meds or treatments. Finding what works for you is a matter of trial and error and, unfortunately, can take time. Only by informing yourself as much as possible about meds and treatments and working with your doctor can you decide which meds and treatments are appropriate for you to try.

With treatments, some of us reach the point where we have absolutely no symptoms and can once again eat anything without incurring a flare. Others reach a point of feeling pretty good, functioning pretty normally but cannot consume trigger foods without problems. Others are somewhere in between and can add a few foods but not all. There are as many possible outcomes as there are patients. That is why we are constantly saying WE ARE ALL DIFFERENT.

There certainly is tremendous HOPE even though there is not yet a cure!!! Not all, but certainly the majority of ICers do find treatments that help them and they go on to live fairly normal and very happy lives. No cure, but, when the right treatment for each individual is found.......so much better!

Annie

[sydney42]

Thanks Annie2 for your thorough response--it's very helpful. Having been recently diagnosed, I have a hard time sometimes figuring out whether I am in denial (and will actually never eat tomatoes again) or realistically hopeful. I guess only time and patience will tell.

[Annie2]

Sydney, I think most of us have gone through a period of denial (at least 1, probably more for me ;) ). Not only are we dealing with an incurable disease, many are living with visceral pain and dealing with a society that does not recognize, understand or even minimalizes the impact of our disease. There is no aspect of our lives that is not effected by the IC monster. On top of all this we have to add a diet that inflicts sensory deprivation (with the exception of sugar and sweet flavors, it is, for the most part, acids and strong spices that create flavor). IC can be a monster the likes of which I don't believe any human could create. ICers truly are my heroes and I admire each and every person here who is fighting this battle.

What you are expressing here, I think, is HOPE! It is what each and every one of us has to hold onto. It is hope that leads us to getting that Dx, hope in our hearts that enables to try every possible avenue of treatment, hope that enables us to face all the difficult situations and circumstances we encounter. It is not unrealistic hope. Many ICers really DO find effective treatments! Most ICers DO get better! Some ICers do get so much better they have no more symptoms, no more pain and no more of the deprivation of their sense of taste and, therefore, are eating whatever they choose! Ahh..the pinnacle of freedom from the grips of IC, putting our tastebuds back to work doing the job they were designed to do! There may be no cure but there is still attainable VICTORY over IC. Even those of us who are feeling so much better but not yet normal hang on to hope and keep on fighting so that we will go another step farther and will eventually reach our goal.

Sydney, I don't think you are expressing denial here. I think you are expressing extreme hope........so hang on to it and reach for the tomatoes!

:grouphug:
Annie

[sydney42]

Annie, thanks for your supportive message! As I suffer through the effects of last night's experimentation (soy sauce, sweet and sour--ouch), your message gives me the hope and courage to keep trying and work through another day.

[Imustpee]

Elmiron has been a miracle for me..I will never stop taking it unless there is a cure...

[VickiB]

When I was diagnosed I began Elmiron, Amitriptyline, Hydroxyzine and the IC diet, pretty much all at the same time. After about eight months I noticed I rarely had pain anymore, and attribute much of that to the Elmiron.

However, being as how I pay for the Elmiron out of pocket ($230.00 a month), I talked to my doctor about finding the least possible dose I can take and still maintain my current pain relief level. After 11 months at 100mg three times a day, I've cut it down to twice a day for the past two months and still feel great. If this maintains, in another month I plan to drop it to once a day. I would love to stop it altogether, but have read others have had bad experiences doing that.

Vicki

[Katrina]

ScottR There are other alternatives for helping build the gag layer of the bladder other than Elmiron that are not powerful drugs such as some of the products available at ICN store http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Alternatives.html
Elmiron in most cases needs to be taken mainly forever unless replaced by something else to help the gag layer of the bladder.
I gave you a link to alternative less evasive treatments...but there are other powerful drugs as well.
syndey42 please be careful taking ibuprophen...it is acidic! Look at this list at Prelief's website http://www.akpharma.com/prelief/acid_reduction.html you may want a different pain reliever!!! Good luck with finding the best treatment for you!


I do believe that with possitive and continued fight and effort finding a treatment or treatments to help your IC allow you to be greatly improved is possible and quite likely! Good luck to you all!!

Blessings! :grouphug::kiss:

[Sarojini]

I have been on Elmiron for just over a year. I tried to stop taking it a few months ago, but within a week I was experiencing more severe symptoms. However, Annie is so right that this will be different for everyone who tries it -- if you can manage your symptoms by diet and Prelief alone, then that is great!

[ScottR]

Katrina,Sarojini: I am a very nervous about taking Elmiron. From what I gather it is a synthetic layer and has nothing to do with the body naturally healing itself. I would like to try the natural healing approach first. I guess the tradeoff is how much one is suffering. There are two books I want to purchase.
"Along the Healing Path : Recovering from Interstitial Cystitis," and "Solving the Interstitial Cystitis Puzzle: A Guide to Natural Healing." Are you familiar with either of these ?

RE: Pain. I have noticed that most suffer with pain in the bladder area. The only pain I ever have would be described as someone jabbing their knee right under my left kidney which causes a low throbbing pain. When this appears I know I am going to have a bad night.

Vickie: Wow 230.00 per month. Thats expensive. Am interested to hear how your decrease in doseage affects you.

Annie: I agree with your analysis on the IC diet. Very bland. I bought the cookbook A Taste of the Good Life and didn't find many recipes in there that I could use. I am a Vegetarian so....no Soy, Tomatoes, or aged cheese is a nightmare. This is a tuff one. Cooking always used to be a fun hobby now it is a search for foods with taste without using many spices or acids. Lunch seems not to be a problem. I make all my own breads and use organic Almond, Cashew and Tahini butters for sandwhiches. Luckily I have cooked all of my foods from scratch for the last twenty years so I am trying to bob and weeve my way through. I think that I may have to add some fish to my diet because I don't see any other way of getting enough protein. Any suggestions ?

Thanks everyone. This is a cruel disease. I can have 4 days good 1 day very bad etc. Its like my body is hooked up to a random number generator and it corresponds accordingly to the its random throws.
Yours in health,

ScottR

(A note from ICNDonna: Neither the ICN, nor any other IC organization in the world, has recommended these books. They are one patient's opinion ... not backed by research. We recommend, "The Interstitial Cystitis Survival Guide," by Dr. Robert Moldwin as a more reliable option. My apologies but, for legal reasons, we must add this to any message posted on our boards which recommends these books.)

[ScottR]

I forgot to mention that I am Trying the Algonot products. Anyone tried these with any luck ?

Thanks,

ScottR

[diane57]

Hi Scott. I've had a moderate to good improvement after about 3 months of the Algonot Cystoprotek. It took awhile to notice it. It wasn't as good an improvement as I wanted, though, so I'm now on Elmiron.

I've read both of those natural healing books and would recommend them. (But I think this website does not, and cannot, officially recommend them...) With this confusing an illness, it's good to have LOTS of reference materials, I think.

Loved your comment about the body randomly generating good days and bad days. That is exactly how it seems to me some days!

[ScottR]

Diane57: Thanks for the book feedback. Did you try any of the approaches the book offered ?
If you don't mind, can you tell me if your symptoms are very extreme, making you decide to get more aggressive by using the Elmiron.
Those Algonot pills are sure large aren't they !

[Sarojini]

We don't usually sanction those books here on the ICN, because they are based on certain people's experience, rather than on rigorous scientific experience. I have not read them.

However, even the naturopathic things like Algonot and Cystoprotek will not "cure" your IC -- you will need to keep taking those as well if they work for you. I cannot reiterate enough that at the moment, there is no "cure" for IC; only treatments that help with the symptoms.

Good luck with your search for natural healing :)

[sydney42]

Scott,
As a vegetarian, I too am struggling quite a bit with the diet modifications. What, no tomato and tofu? How will I survive? I do eat fish (I call myself a pescatarian) and that does help a lot, both with protein and with getting some savory flavors in. Yesterday two friends who both know I've been veg for years asked if I'm thinking of "coming over to the dark side" (i.e., eating meat) but I just can't do it. Fish and seafood do open up the options, though, and there are plenty of preparations that don't use lemon, tomato or other danger foods.

[ScottR]

Sydney,
I too think I will have to add fish to my diet. I remember that I had my first major flareup ( 1 of 3 in the last 15 years) 6 months after I changed my diet from a dairy based vegi (sometimes meat) to vegan with lots of tomatoes, tofu and low fat. I think there was a connection there.
Right now I think I will take the option to get me a more normal life.
I do not wish to climb the mountain go to the cave and become an ascetic Monk, living only off the Alkaline leaves from plants .

[diane57]

Scott, to answer your questions, I have mild to moderate symptoms; about a quarter of the time I feel normal (I'm very lucky, I know), a quarter of the time moderate discomfort (very little frequency or urgency, just pelvic pain), the rest of the time mild discomfort which varies during the day and day-by-day. I am terrified that I will get worse, though, even though my uro says most IC is not progressive. I had very mild symptoms for about 20 years until a flare-up last summer, apparently caused by some gynecological problems. It's hard to tease out how much of my pain last summer was actually pain from the gyn problems, and which was from IC. I started the Cystoprotek in December, and it seemed to take me from maybe an average of 4 on the 1-10 pain scale (i.e., I was in discomfort but not quite pain) to an average of 2 (very mild discomfort). I've been on the Cystoprotek for 4 months now, and just recently saw a uro, was tentatively diagnosed with mild IC, and began taking Elmiron, my only med. Although this uro is a hot-shot IC uro guy, and I have great confidence in him, he had never heard of Cystoprotek, which I find amazing. It seems like the truly traditional medical-type people don't bother to even learn anything about any alternative treatements, they just assume that all alternatives are ineffective and only pharmaceuticals and surgery can help. I'm committed to trying the Elmiron for at least 6 months and possibly a year, I really have faith in it. I'm trying to reverse my mild-to-moderate IC into remission or as close as I can get to it. Also experimenting with diet, etc., and will continue the Algonot while I take the Elmiron.

I picked up a few ideas from those alternative books. One of the books is just a sort of summary of herbs, homeopathics, teas, essential oils, and other natural treatments that have worked for the author and for some other IC people she knows. For example, marshmallow tea, the author says it very much helped her and she has many IC friends it has helped, its properties are x, here's why you should be cautious about it, here's where you can buy it, tea vs. tincture, how to brew it, she drank x cups a day during flares, etc. - she goes through about a dozen herbs like that. I've tried some of the herbs and teas she recommends, and they seemed to help a little. She thinks IC is caused by the body being out of balance (I can hear the traditional medical people groaning LOL), and she describes how she applied that philisophy to her own healing process. I liked the book and found it encouraging.

The other book is quite extensive, recommends an alkalizing diet, heavy heavy on raw vegetables and vegetable juices at the beginning, but there a many other chapters about many aspects of IC - sexuality, various herbs, cleansing programs, bodywork I think, a lot of talk about alternative treatments. I did go out and buy a juicer, and the more vegetable juices I drink the better I feel, but I certainly haven't applied the entire program to my situation. I sort of pick and choose between alternative and medical treatments, I'm not entirely committed one way or the other. In general, for any sort of mild condition, I would tend to try something alternative before something pharmaceutical (i.e., hot water and honey before Pertussin), but for something life-threatening, painful or otherwise serious (broken bone, pneumonia) I'd head straight for an M.D. and follow all advice. I think I'm alternatively-inclined with IC because my own case is mild, and I have some wiggle room there. If it worsens into pain, I will probably immediately go the medical route until I'm comfortable again. Anyhow, the sky did not fall on me when I considered alternatives! I think even traditional medical types would be wise to at least look through the books before discarding them out of hand.

Hope this helps. Good luck!

[icsue]

Everytime I go off it, my symptoms flare up. This time it's taken 6 months for things to get back to normal. I had fun though. Coffee, soda, chocolate, hot foods...the works. Now I'm just getting back to normal after going back on my diet and meds.

[Stephanie2004]

I bought the Solving the IC Puzzle book and gave that approach a try. I found that too many things on the food lists and the supplements caused flares. Finally, I decided that I was better off scrapping the specifics (which were usually only supported by quoting other naturalist's assertions) and walking away with the main principle of eating as many veggies as possible.

[Mare]

Vicki: Just want you to know that I have been taking only 1 Elmiron per day for a while now, and am still doing well. If I feel a flare coming on, I just up the doseage for a while. I started with 3 per day in 1997, so I have been using it for quite a while. I recently had some oral surgery and my Dr. suggested that i stop taking it 5 days before the surgery due to the blood thinning issue. And now I am back on it and did OK for the 5 days. Good luck in your journey, Mare

[asmashly]

So, it seems like Elmiron is a perm. in a life of an IC patient. I have been on it for 3 yrs, and took myself off of it for 6 months, b/c I thought I was cured. I am now finding out that is not the case, and probably never will be. I am back on now, 3x a day. Which taking the med can be hard, since it must be taken 2 hours before or after meals. I don't usually go that long with out eating.

[VickiB]

Mare, thanks for your thoughts on this! 1 a day is where I'd like to get to, and your experience gives me hope that I might reach that goal!

Vicki

[PamIvanicki]

Do I have to stop taking the Elmiron if I'm having surgery? I heard that the dosage most of us take is not really high enough to cause the blood thinning. Anyone?

[icsue]

You're supposed to stop taking it before surgery. Ask the doctor and tell them to look it up and they will most likely tell you to stop for a week.

[PamIvanicki]

Thanks. I'll do that.

[ScottR]

My last question on Elmiron is do people take this even if they know what foods send them into a flare so that eventually they will be able to eat these foods thereby being able to return to a more normal eating pattern.

[icsue]

I try to get off the Elmiron and the diet and I have failed at both. I don't follow everything but mostly the drinks. I can eat some of the foods but not the alcohol, coffee, coke, acid fruit drinks. The prelief helps if you want to eat something that's on the list. I eat foods that are a little spicy, nuts but not the oranges and pinapples.

[poetgirl]

Other natural treatments you may be interested in trying are flaxseed oil, MSM and glucosamine with chondroitin, since they all help with reducing inflammation. As Sarojini (Jen) mentions above, there is currently no "cure" for IC. If there was a natural product out there that rebuilt the GAG layer and completely healed our bladders, you can bet we'd all be lining up to take it! And taking all of those natural products can be nearly as expensive as taking Elmiron!

I'm not so crazy about taking all of these medications either (I'm on Elmiron, Elavil and Detrol LA -- Urised on a bad day) but they've given me my life and my sanity back. I was able to cut my Elmiron in half after about a year or so, which I felt was a good sign that my body had made significant recovery.

If you're into holistic methods, then I would urge you to try chiropractic, acupuncture and reiki. People have reported varying degrees of success using those methods, and I believe they can be beneficial in helping your body heal and cope -- but not a cure, per se.

[VickiB]

I would like to think that some day I can return to a normal eating pattern. But even now, after a bit over a year on Elmiron, if I dare eat a trigger food I go right back to the pain I was in at the beginning. I've come to accept that if I can't have certain foods again, then that's just how it is. And I'll gladly pay that price to have my life back.

Vicki

[PamIvanicki]

I miss certain foods, but can live without them. Eating out with friends is the hardest thing. I think I'm getting a balanced diet just sticking to the "Usually OK" list. I do miss wine, though, as it was one my great loves before this happened. This disease takes such a toll on your social life as well. I miss languishing over a glass of cabernet with my husband before and after dinner. Funny how food and drink plays such a role in our lives, more than just nutrition.