Meds and Remission

[Baba Yaga]

Are there meds that are typically discontinued after a bladder is seen as "sufficiently repaired"? If so, which ones?

Or are all of them something most IC sufferers will need for the rest of their lives (provided they got initial relief from them in their first year or so)?

[ICLori]

As far as I know, all medicines must be continued. The reason for that is because there is no cure for IC.

That means there is no treatment or medicine (aside from bladder removal, perhaps) which permanently stops the IC.

All we have are treatments that alleviate the symptoms.

As long as you take the treatments/pills, you get the temporary relief (if you are lucky.) As soon as you stop taking the pills, since none of them are a cure for IC, the IC is right there again.

Blessings,
Lori

[hoping4acure]

I was on the Elmiron, atarax combo with hydro's when my IC was active. I have been in remission now for almost 9 months. I do get small flares but nothing like what I went through for 3-1/2 years!

I am currently taking algonot plus, flaxseed oil, and the IC diet.

[jaime15]

I know of a couple of ladies who found relief in Elmiron. Once on it for years they found great relief of their symptoms.

So eventually were weaned off. It is far from over even in their cases. Proper diet should still be maintained even if we get lucky enough to have diminished symptoms.

I sure hope your combo of meds, whatever they may be, finds you having better relief in the future.........and who knows.........this could be the year for a cure..... :)

Take care.

[ICLori]

One of the things that makes evaluation of treatments difficult is that there are many IC'ers whose symptoms wax and wane. So they naturally, even without any treatment, would get better, get worse, go into periods of remission, go out of periods of remission. In fact that is a more common form of IC than the form of those of us whose symptoms are bad every single day.

Generally, though, I think we will all agree that there currently is no cure for IC.

Because that is really what the poster is asking - if there is some pill or procedure that you can do for a time or once or whatever and then be IC-free the rest of your life.

The answer to that is still pretty much "no."

Blessings,
Lori

[ICLori]

P.S. Even "just" taking Algonot and flaxseed oil is not the same thing as taking nothing at all....Algonot is reported to have much the same effect in the bladder as Elmiron.

[Baba Yaga]

Thank you all so much!!!

[hoping4acure]

IClori:

I agree with you that there is no CURE for IC...I didn't say "just" algonot and flaxseed, I said "I am only on the algonot plus and flaxseed oil, and the IC diet." When my IC was active, I was on 6 different synthetic drugs, so to go from that to "only algonot plus and flaxseed oil, is a giant step, in most people's eye's" Not to mention the HOPE it brings to any one new with this disease.

I am a firm believer of natural supplement (alternative medications :) )
VS. synthetic drugs...that's just me.

What worked for me was the algonot and the hydro's....mostly the hydro's. I am not saying that I was "cured" in any way, shape or form. I know I am in remission, but...I have a possitive attitude, great support around me, and a firm believer of FAITH & HOPE and I am very strong minded. ;)


-Louann

[Pac168r]

Amen :angel:

You've been a great support to me!

Thanks,
Paula

[kjones1]

Right on! I am a newbie and am right now on lots of medications which iI hate. Before this I was extremely healthy and only took my birth control. After some antibiotics and other meds for a skin infection I came down with the IC. I think the meds brought on my IC, the original medications my doctors gave me made it worse and now the only way to treat it effectively are to keep taking meds. But when you see people like Need2Heal here in remission and only taking natural supplements thats inspirational.

If I have to be on these medications the rest of my life so be it but here's hoping to weaning off of them or substituting them with more natural forms of healing once the IC is more managable.

Wishing everyone well and relief--KJ



I agree with you that there is no CURE for IC...I didn't say "just" algonot and flaxseed, I said "I am only on the algonot plus and flaxseed oil, and the IC diet." When my IC was active, I was on 6 different synthetic drugs, so to go from that to "only algonot plus and flaxseed oil, is a giant step, in most people's eye's" Not to mention the HOPE it brings to any one new with this disease.

I am a firm believer of natural supplement (alternative medications :) )
VS. synthetic drugs...that's just me.

What worked for me was the algonot and the hydro's....mostly the hydro's. I am not saying that I was "cured" in any way, shape or form. I know I am in remission, but...I have a possitive attitude, great support around me, and a firm believer of FAITH & HOPE and I am very strong minded. ;)


-Louann[/QUOTE]

[ICLori]

For those who are leery of traditional medicine, Algonot is a good substitute for Elmiron. Actually both are natural substances. In fact you wouldn't believe how many modern medicines got their start from natural substances and herbs (aspirin, for instance.)

There is a mindset today among many that all traditional medicine is bad and all non-traditional, herbal medicine is good. The only caution I would like to add to this thought is that even herbal medicines can have side effects, you can be allergic to them just like regular medicines, and you can overdose on some of them too (especially the fat-soluble vitamins, for instance, or natural licorice which when taken in excess can raise blood pressure.)

I am in remission now, but because of a traditional med. I do not consider it a bad medicine just because it is traditional, and I am not looking to try to replace it with anything herbal at this time.

Many people believe that they are not "on" anything if they are just taking supplements...I was just trying to say, hey, guess what, you are still taking a pill, even if it's a morally superior natural pill as opposed to a medicine pill.

I'm a big believer in giving people hope too - that's why I always say, keep trying things until you find your miracle.

The original poster wasn't asking if it's possible to go into remission. Or to go into remission with only natural meds and no modern medicine.

She was asking if you could take a pill or get a procedure and then boom your bladder is fixed and healed.

My answer to that was and still is, not as far as we know today.

Blessings,
Lori

[kjones1]

True! I did not mean to suggest that one type of medicine is better than another. We are all different. Our bodies respond differently and some people's bodies are more comfortable to different types of medicine. I personally am not thrilled with having to take so many medications (whether they be traditional or non traditional) and hope to one day find the right combo of these medicines to live the happy life we all deserve. I am sorry if I insulted anyone and I encourage everyone to look for treatment options that work for you and that you feel safe taking. I think that these different options can be confusing in the beginning but ultimately they also can give us hope that there is something out there for everyone- we just need to be patient (hard to do of course when we are in so much pain) and have faith that each person will find the treatment that is right for them.

But as Lori said there is no cure for this condition. :(

Just remission.

Everyone please take care of yourself on your journey of healing.

:grouphug: --KJ

[hoping4acure]

There is no cure (for now).

No, there is no "miracle" pill or procedure that will "fix" or "heal" your bladder.

I try to keep a possitive attitude...which, I think I have accomplished very well.

I hope you are having a better day.

-Louann

[ICLori]

I keep a positive attitude too. That's the best attitude we can have as IC'ers! That's why I haven't given up over the last five years even when all the standard treatments for my IC failed and when a bunch of herbal remedies that I ordered also didn't work.

Because I kept trying, and kept positive, I finally found a doctor willing to prescribe a drug that only one study has been done on, for use in IC, but it worked for me.

That's what I urge all the newbies (and oldies, LOL) on the boards to keep trying - keep the faith - there will be SOMETHING that will help you if you just keep looking and keep trying. It might be herbal, it might be allopathic (traditional) medicine, it might be a procedure or just about anything. If it works for you, that's all that matters!

If one thing doesn't work for you, please don't lose hope - just move on to trying the next doctor,the next herbal healer, the next medicine!

There are some new medicines appearing on the horizon all the time - Cytotec and Cyclosporine-A are examples of two medicines that have not traditionally been used for IC but which are showing some promise in preliminary studies - and there is every reason to believe that we are moving closer to good remedies or maybe even a cure someday.

Blessings,
Lori

[Baba Yaga]

I'm sorry if I instigated a disagreement or misunderstanding between anybody.

Every post in this thread has been very interesting and helpful to me. I definitely understand a preference for natural supplements, but agree also that there isn't always a clear distinction bewtween a pharmaceutical drug and a "natural" substance. There are even a lot of pharm drugs that end up OTC and we think of them differently as a result.


Thank you all for your information.

[ICLori]

Baba Yaga, you didn't start anything.

I am just reacting to what I feel is a strong movement over the past six months or so on these boards to condemn allopathic (traditional) medicine and to favor herbal or non-traditional remedies, and I am trying to say that both types of medicine have great usefulness from what I have seen. One type of pill does not have moral superiority over another, IMO. If it works for you, great.

What I would hate to see happen is for all the newbies to be influenced by the idea that all allopathic medicine is bad and harmful. I think that many have been helped by allopathic medicine, many ICers even, and I think it would be a shame if peer pressure caused newbies to refuse to try any allopathic medicine for IC.

Blessings,
Lori

[hoping4acure]

Baba Yaga: You did nothing wrong. I hope you didn't get the wrong impression from me.

I too, learned something about a drug that I knew nothing about. I am glad that it has helped someone into remission :)

Yes, I do agree...keep trying until something does work for you.

[Baba Yaga]

I didn't get a bad impression of anybody -- This is the nicest community I have ever seen on line!!! Or maybe tied with ONE other.

I will have my first conversation about with my doc about meds this coming Wednesday. I will probably bring print-outs of various article abstracts regarding things that concern me. My main concerns are to stop hurting, and my own extreme sensitivity to a lot of drugs.

This board, in the one week I have been reading it has been an amazing resource. And I appreciate reading all the varying perspectives.

Wendy

[kjones1]

Wendy,

Isn't it crazy how much you can learn here? I don't think I could have accepted my IC without the help and tips from others here. Its a great place to learn and get support. It will make you more prepared for your doctors visits and will make you aware of what to expect. I say the more info the better. Although everyone is individual and responds differently there is so much to learn about IC from who better than other ICers. Just remember to check info with your doctor and yourself. You will be the only person to know if something is really hurting or helping you. I wish you luck and keep us posted on your progress.

Much Love--Kelly

[Sleeper Service]

Interesting topic.

I think ICLori is absolutely right to point out that modern medical treatments have just as much - and often more - validity as traditional herbs. It is very important to remember that a lot of our modern medicines are actually derived from more traditional remedies, however the key focii in developing and refining these drugs are a) to improve the efficacy of the drug and b) to remove side effects.

For example, St John's Wort is hailed as an anti-anxiety drug and it is a reasonably effective one, however it has the side effect of causing some other medications to metabolise too quickly and not be absorbed by the body - and one of those drugs is Cyclosporine. In addition, although it has been seen to be effective as a mild anti-depressant, it has never been compared against Prozac or Zoloft which are the two mainstays used at the moment and both are believed to be more effective.

The bottom line is that just because a medicine is seen as traditional does not mean that it doesn't have side effects. You have to be clear as to what is going to be most effective for you and to understand the possible interactions that any given remedy may have with other drugs you take.

That said, if it works for you then go for it! :)

[louise]

Hi Lori,

It Sounds Like You Are Doing Very Well On Your Medication.
Do You Mind Sharing What Drug You Are Taking That Is Helping Your Ic? For The Past Few Days I Have Been Taking Cytotec And Hoping In Time That It Will Relieve My Severe Pain As So Far Nothing Else Has And After Thirty Years Of This Pain I Am Not Doing Very Well. Many Thanks For Sharing.

Louise

[ICLori]

Hi, Louise, well, I had a remission on Cytotec, but it stopped working for me. Unfortunately, in a minority of patients, once their body adjusts to the new medicine, it stops working. I was one of those unfortunate minorities.

I'm now trying Cyclosporine-A and it's been touch and go. Not sure if it's going to help me yet, but it's too soon to really tell. In another 3-4 months I should be able to say whether it's helping me or not - it's one of those long-term drugs rather than short-term solutions.

I hope so much the Cytotec will work for you, and not stop working ever.

Blessings,
Lori

[waterflow]

Any pill that is "natural" or "man made" has risks. I learned a long time ago just because it says natural does not mean it is safe to take. (it was for something else then the IC). The person has to read information on whatever pill they decide to try and decide on the pros and cons. I do have one little problem with the boards here. I am going to try and write this the best way I can but don't think that I am judging. I think the word "cured" should not be used. Some people will post with a heading that "they are cured" or they "found a cure" when they have not. Being cured means you do not have to take another pill or have another medical procedure done again for the IC to be gone. They could post "They feel 100% better" or something like that but I think cured should not be used. Diabetics take insulin so they can live. It does not cure them. I know there are a lot of desperate people who come here (including myself at times) and when they see a post like that and then read what it really means it can be very very hard to handle. I am new to this web site so I don't want to sound like I am a pushy person or something it's just...it is hard to deal with the reality of having IC and sometimes wording needs to be careful. Hope I explained it ok and did not offend anyone.

[Ascending]

Hi All:

Very interesting reading. I too am a newbie and have found the site to be overwhelming with helpful information which I'm printing - with JO's permission - and giving to my dr's.

On the other side there is so much that works - or doesn't for so many people - that - as a newbie - it is quite confusing.

Because I am in 24/7 pain which escalates (flares) to the point of incapacitating me - I look at the various recommendations - an have to ask -

Of the med's/procedures - western med or otherwise - how long did it take for whatever worked to work??

I'm also not clear on what is meant by "remission" - does that mean no symptoms?? - or a drastic reduction of symptons??

I also would like to share something that I tried and continue to do which very much worked for me as a temporary - 2 to 3 days - immediate relief of all my pain from both IC & IBS. If only it was sustainable :**

Someone suggested contacting a spiritualist centre. I hesitated for some time then finally was brave enough to try. My hesitation was due to confusing spiritualism with religion. Once there I was happy to learn the centre's are open to all denominations - no matter what your religious belief's.

The one I contacted had healers - most of whom perform healing's - either for free or for a small donation to help with the costs of operating the centre. As I haven't been able to work for well over a year - in my case - they have given me healings for free. One day I'll make it up :**

When I first get a healing - I come home and go to bed as it really tires me out - but is very relaxing. The next day I get up feeling absolutely awesome!!

Just like the old me :**

I hope this info helps others on here who just need some relief while trying to gain more sustainable relief from the pain through other methods.

[hoping4acure]

Hi!

"Remission for ME" means I have NO pain at ALL, and I can eat just about anything (except for black pepper and onions..weird hah?)

I got there by taking the elmiron for about a year along witht the atarax, and using the IC diet like a "bible" I hardly ever strayed from it.

I went off all my meds and I started with the algonot,faxseed, and marshmallow root tea. I just had another Hydro done recently and I believe with ME it is more nerve endings than anything else. My doctor told me my bladder is round with NO rips, tears, or ulcers. I do have pin point bleeding and for whatever reason...the HYDRO's help.

I hear you about being in pain 24/7...that was me! I believe you should do what works best for you and keep the faith. You can live a normal life with IC once you find the right combination.

Good luck!

:)

[green_the_fish]

I agree with you, Waterflow. When it comes to IC, the term "cured" also bothers me. There is no cure for IC. I wish people would see it like they do in AA... you are always a recovering alcoholic, but you are never "cured" of alcoholism. That's how I think of IC. You can be "recovering", but until there is an actual cure, you are never going to be "cured". Maybe certain people don't want to think of it that way because they find it discouraging, but I think people have to stay grounded, or they risk falling into denial. I mean, I do believe that some ICers have gone into permanent remission, and I think that's wonderful. I'm very happy for them... but they are still not "cured".

Anyway, I think it's interesting to read about how different people interpret remission. To me, remission means no symptoms. Right now, I have very low-level symptoms, but I will not say I'm in remission until I have no symptoms. This is probably one of the strictest definitions of remission, but I think it is obtainable. I know I am going to keep trying new treatments until I am in completely asymptomatic remission, and if I never get there, then at least I tried my best. Even if we can't have a "cure" yet, I think we can still aim high.

Most of the time, I think that that completely asymptomatic remission can only be achieved by staying on meds, herbs, or having some kind of other IC treatment on a regular basis. Some people claim that their remission has continued despite the fact that they are no longer using any treatments, and I definetely believe them, but I think that this will not be the case for the majority of us.

[lauriejwas]

Hi y'all. I've been away from the message boards for months -- from being very busy and maybe because I'm lucky enough to have my IC under control most of the time at the moment.

In fact, that's why I'm on here again -- I seem to be going through some kind of remissive stage. :woohoo: How long it will last, I'm not sure, :pray: but I'm happy to get the break for awhile and I'm as eager as anyone to find any common thread that might help a few more people if we find something in common. Here's my question:

Has there ever been done a survey about IC remission? I'd like to know: 1. What people were on (including diet) when they went into remission; 2. HOw long they had the IC; 3. How bad the IC was; 4. How long they've been or were in remission; 5. Did they change their medications or diets while in remission? 6. What season of the year was there remission and do they notice a cycle that's related to seasonal allergies? 7. If the IC has come back, is it the same, worse, or better? 8. How many remissive cycles have they been through?

I was just hoping there'd be some common thread in the remission stories (I assume that researchers have already studdied this, but I was just curious).

Here's my remission story: Diagnosed about a year ago. Symptoms very bad at first while I tried various meds. Finally found a "winning" combo for me that has kept it under control most of the time with occasional flares: In the a.m., 1 Claritin and Extra-Strength Tylenol and Urised throughout the day; in the p.m., 1 Enablex, 1 Extra-Str Tylenol PM, and 40-70 mg. (depending on how the IC's doing) of Hydroxyzine (which I believe is Atarax?), a VERY strict and consistent IC diet, and tons of water.

My IC seemed to flare up in the spring and early summer during "allergy season," then has calmed down so much that I have been able to cheat quite a bit on my diet (I actually had 3 pieces of pizza yesterday -- I was in HEAVEN -- and so far so good but I'm not going to cheat for another few days now). I've gotten the hydroxyzine down to 40 mg. again, and I'm drinking about 6 water bottles a day. I'll let you know when I go out of my remission -- wondering if it will be in the fall when allergy season is back and when my work schedule picks up again.

I guess I do notice a connection with allergy seasons, and the fact that hydroxyzine works so well for me tells me that I'm one who has a lot of histamines in my system. I'm also menopausal (I'm 46) as of two years so I'm guessing hormones may have a place too.

Anyway, can anyone else give a detailed account of what was happening before, during, and after remissive episodes?

Laurie

[purpleviolet]

What happens if you don't have tylenol and urised? How is this remission? My definition of remission is that one doesn't need pain pills to cover symptoms, but some meds to conteract the underlying causitve factors, like histamines, etc. I understand everyone remission is relative and personal. Thanks for posting. PV.

[massagedoula]

My definition of remission was always the same as Green the Fish's. No symptoms whatsoever. So I have not considered myself in remission. But if I was to take PV's defintion, then I guess I would be! I have low level symptoms, and at times don't think about my bladder, though other times it still drives me crazy, though I can work through it, unlike before....I still take Elmiron but have dropped to 2 pills a day and am still doing quite well. I do plan to one day drop to one, then every other day...then see if I can get through life on diet and physical therapy and self care alone! I'll keep you all posted on my journey. Sorry I don't post much anymore, I am really busy with school. I just went to my 15th birth!

[ihurttoo]

When I think of remission, I think that it means that you have no symptoms at all at that time, although I do agree that doesnt mean one is cured! I also think it is possible to take meds during remission, such as Elmiron, or other "repairing meds", but I dont think I would consider myself in remission while taking pain meds of any kind, or Pyridium or anything else that would mask the symptoms. I do think you can be in remission while still following the diet for IC. But that is just my opinion, and I am not sure about it.


FOR MASSAGEDOULA:
This is off-topic, but I just wantedto say to Massagedoula that I sure have been missing you around here, on the boards! I am so happy for you that you are finally attending births, as you have wanted to do for so long! How exiting that must be to be there for the most important and special moments in a person's life! We are all so proud of you! However, I do have to say that I sure do miss you here, although I totally understand that you are busy these days, and I am so happy that you are feeling well enough to be out there pursuing your dreams. I hope that we all get there at some point. I think it is wonderful what you are doing with your life! Glad you stopped by today, but dont be such a stranger!!! We sure do miss you!!!! I know I do!!!! Lots of love and hugs, Amy

[ICLori]

Amy, a big second from me regarding Massagedoula! I sure do miss her. I'm so glad to know she's doing well, though! I hope that her IC isn't bugging her or anything - I hope that she's healthy.

Blessings,
Lori

[massagedoula]

Hi!

I miss you all too...I still look at the boards quite a bit, I just don't post very often. I just follow the stories of the people that I have gotten to know over the year plus that I have been on the boards. I will try to post more too, I promise! It is REALLY hot here, like 101 (which is hot for Washington) and I may have a tooth abcess. So even if my IC isn't too bad...I still am not living the good life yet! Also, I still get flares. My IC flared up last night (from being uncomfortable in the heat) and I had gone a whole day without Elmiron. So I took one in the middle of the night and woke up back to my baseline. Not totally symptom-free, but good enough, that's my baseline!

Just plodding along in life but not feeling too bad (in regards to IC),
Your friend,
Emily (Massagedoula)

[ICLori]

Thanks for posting, Emily! I'm sorry about the tooth abcess (ouch!) I hope the dentist can help you soon! Sounds like you are doing pretty well IC-wise...I'm doing pretty well these days too (knock on wood) on the Cyclosporine-A.

Hope this heat wave breaks soon, too, for all of us...

Blessings,
Lori

[lili]

I feel that I am in remission because I am relatively pain free and I can do so many things that I couldn't before. It's about taking back my life instead of suffering alone and in pain.

My condition seems directly related to how much water I can drink. It is harder in the summer heat because I sweat more so I have to drink more to compensate. I follow the diet and take prelief only. I think that maybe the water flushes out the toxins to my bladder (acid). If I live this lifestyle I can have a normal sex life (with a post-coital glass of water).

What I cannot do is wear tight pants (never again jeans) and I cannot sit (like a long car ride) for more than 3 hours straight. Anyone else have a problem sitting? That and the pants seem to press my bladder in a way it does not like. I believe that information will set us free! Lili

[ihurttoo]

Emily, (massagedoula) It so good to hear from you!!! Sorry about your absess. Those can be SOOO painful! I hope that it goes away soon and you start feeling better. Good to hear from you! Hugs, Amy

[presley]

I am confused about how one can be in remission... Does this mean that there is no more pain or does this mean that the pain has subsided?

Thanks
:elvis:

[hoping4acure]

Hi Presley.

I can only speak for myself. I was dx'd about 5 years ago, although think that I have had it most of my life (I'm 44.)

I went through hell and back when I was first dx'd. I was in pain 24/7. I had a doctor treating me that didn't know that much about IC (surprise, surprise) I found a spealist in Boston who put me on the Elmiron and Atarax right away. Then we started doing installations of elmiron, bicarb, and lidocaine. When the treatments stopped working, I started doing HYDRO'S. The HYDRO'S are what works for ME. I have a round bladder, with no rips, tears, or ulcers. I do have pin point bleeding though, and a lot of my pain comes from the nerve endings. My NP suggested valium when my pelvice feels tight, so I do take 2-1/2 mg of that when I feel the tightness coming on. I think I was lucky I found my doctor in Boston and she knew all about IC. I read on these boards about people going through hell trying to convince their doctor that something is wrong and they don't listen. That just has to be a horrible feeling. That's how I felt about my first URO.:

I still stick to the IC diet (most of the time :wink: ) and I am currently on the algonot, Hyaluronic Acid, and colostrom. I am no longer on the elmiron or atarax...that's just a personal choice though. The colostrom helps boost my immune system and "cleans me out" I cycle that. I think the marshmallow root tea helped a GREAT deal along with a few others that I tried...you can find my story under I'm in remission.

I CAN eat a lot of things that I wouldn't dream of trying 4 years ago. I am hardly ever in pain and I am back to running and weight lifting. I basically live a some what normal life. I have a wonderful husband that supports me and has given me some very tuff love along the way. I think possitive & say my prayers every day that they will come up with a cure for this diesease, but I always look at the glass as half full :wink:

I do have to go in and do a HYDRO once a year, but, so be it. I don't mind. I can go out now and enjoy myself with my husband and not worry about where the bathroom is and I don't have that pressure or urgency anymore.

I think it's just finding the right combination for you, and I am confident you will get there. Don't ever give up.

:)

[Tura]

Im very happy for you that you went in remission. I have heard horror storys of hydros causing lots of pain so one was enough for me and my doc hasnt suggested more. My doc is a uro gyn and works with ic patients. elmiron did nothing for me so i stopped it and am now on oxytrol patch and imipramine. Both help but im not 100% over or in control of this. I dont think everyone that gets this can go in remission. I have mostly urgency frequenc and if i dont go when i have dire urge the urge just gets worse. Oh im done pelvic muscle excersizes too thats how im up to 1 hour between opotty breaks cause of those. I can go no longer than 1 hour between bathroom visits though. Thats up from 10min to 30 but that is still very tough and thats with following the diet. I sure hope they come up with a cure someday for this. Gigi

[Tura]

I read you have ibs. What are the suymptoms. Currently im haveing pal colred stools that have bright blood in them. Im going to urgent care tomarrow to see whats wrong but what could this be? ibs possible? thanks Gigi