Longing for the days of remission

[Kathleen Philli]

I have read some interesting stuff here on this topic and thought I would put in my two cents. In reading a lot of things on this site, I have learned quite a bit from others. Although everyone is different, and I believe that we may be dealing with more than one disease process here, some of these gals stories are amazingly familiar. I have had IC for at least 12 years. I am one of the lucky people for whom elmiron works. I was part of the original clinical trials and achieved complete remission on elmiron alone. Over the years, I have done so well that I have had years with virtually no symptoms. I eat and drink anything, and unfortunately, I get sloppy with taking my medication because I really don't like the thought of needing pills to survive for the rest of my life. Up until recently, I have had only one bad flare. This was after the birth of my daughter 10 years ago. I did not take elmiron during my pregnancy and had no IC symptoms at all. After the birth, I did have a very bad flare, but went back on elmiron and eventually it quieted down. In the past year or two, I have had a few minor flares that have lasted a few weeks and resolved with some minor diet changes and getting back on the medication. I am currently having the worst flare I can remember. It may be coincidence, but my flares can all be related to extreme stress and trauma. Does anone else have this experience? When my house was very damaged in a major hurricaine, I flared while living in a shelter for a month. Most recently, I had a very bad back injury and I have had unrelenting back pain for 5 months, and of course my IC has flared worse than ever. This time, it doesn't seem to want to budge. I'm back on elmiron plus vistaril, and for the first time I'm trying Aloe caps, quercitin, and glucosamine chondroitin MSM. I sure hope something works soon. My advice to anyone who goes into remission with elmiron is don't stop it unless your doctor tells you you can't take it for some reason. I have learned that eventually the IC always comes back. I guess I'm here because I do believe remission will come again, and I will never take it for granted.

[leelee88]

Hello Kathleen and :welcome:
I have not taken Elmiron yet but I am going to ask my Uro about it next time I go..As far as stress causing your flare.. I agree with that completly.. I to lost my home due to Katrina.. I was in a major depression and had to tones of stress.. I was dg with IC one year later, but was having the symptoms before the dg just didnt know what it was.. If Elmiron does help me with no problems I plan on staying on it..

I sure hope you get some relief soon.. Good luck ((((((((((hugs))))))))))

Ronda

[Roxie2007]

HI! Gosh sorry to hear about the dreadful pain you are in now! I hope you can get it back under control soon.
I'd posted an another thread tonight that my IC specialist/UROsurgeon told me that IF you go off IC it comes back and sometimes worse than you had it the first time. I sure wish scientists would get this whole thing figured out and find a cure for us. I feel like I'm on a roller coaster most of the time trying to juggle meds, food, vitamins and illnesses. It can drive ya nuts sometimes! Hope you feel better soon! Roxie

[Roxie2007]

I forgot to mention.......stress always makes me flare too......any emotional upheaval will do it for me. UGH!!!!!

[mom_in_ma]

Stress is my biggest trigger! In fact, I was under extreme stress when I developed this disease and it was extreme stress that pulled me out of my last remission. I've really been working on relaxation techniques lately.

[Prissymt]

I've had a number of symptoms over the past 6 weeks, but had to wait to see the urologist, so am now on Hydroxizine for a few weeks, then . . . I can manage the diet, but if the constant urethral burning comes back, I could barely stand it, and nothing works! You mentioned MSM gel. I ordered some from Dr.Jacobs. Is it really no problem to apply to that area with no problems? How many hours do you find it works?

[Roxie2007]

HI! In the beginning when I first got the MSM gel I used it 3 times a day for 5 weeks.....now I just use it once a day. It doesn't burn or anything like that. I hope it works for you as well as it has for me. Let me know....Roxie

[bpbennett]

I was in remission for about a year and a half. Then all of a sudden I am having an awful flare. :( I can't seem to figure out why...maybe mine is stress related too. My husband of 13 years and Ii had a very bad couple of weeks...you know the "I can't stand to be around you" pitfall that I think all marriages go through from time to time...ours just lasted longer than normal...lol Anyway, I am now considering the idea that since I was so stressed about a month ago this through me into a flare. I too am having to get reaquainted with my herbs and meds...AND Diet! :cussing:

[ABliske]

i got diagnosed during a really stressful time. My husband and I were living in a cottage on my mother-in-laws property and i hated it. We had a lot of fights during the time and my mother-in-law was always getting in our business. Things are much better now and we have a house of our own!
I have had a bad flare, it you can call it that, for almost a year. It's encouraging to hear you did well being pregnant. I want to have kids, but right now I can't go without my meds.
HOw long did it take the Elmiron to work for you? i'm not sure if it is for me.

[vm]

I'm sorry you are in a flare again, Kathleen. :( I hope being back on Elmiron and some of the other treatments you mentioned will help get you back to remission. :kissing:

Thanks for the reminder about Elmiron. I am one who's been helped by it and it's good to remember to never take it for granted or go off of it.

[mary124]

I'm another one that has been helped with Elmiron--been using it since 1997 I have had no problems. Pretty much follow the diet--(not as diet sensitive as others are). Was even in remission for almost 5 years up till I had my hyster. back in 2000 since then its been managable with medications and having hydros when it gets too much for me.

[Kathleen Philli]

This reply is really a question for Mary who has had a hysterectomy. Did you discuss any form of HRT after the hysterectomy and do you take estrogen in any form. I am currently taking the pill because it definitely helps my IC, and I don't get many periods a year (3-4) minimizing hormonal flares. My Gyn tells me I am going to have to get off the pill when it's time for menopause, and I am terrified that loosing my estrogen will throw my bladder into an uncontrollable flare. Any thoughts.

[kk928]

This is all very interesting about stress. I too came down w/ IC in February ( dx May 3, 2007) while I was in a high stress situation. I was in a year graduate program that was very demanding, driving 1 1/2 hours each way to classes, hardly sleeping because of the work load, and also student teaching. IC put the breaks on all this and still trying to get control of the situation. Did anyone read the post about cats getting IC when injected w/ something that will cause the cat to be stressed. It said that the adrenal gland was smaller than normal in cats that got IC and that the gland did not respond properly while under stress. Very interesting. I guess relaxation techniques are key. -Kathy

[Dewshine]

I am newly diagnosed with IC. I do believe that stress caused my IC. Otherwise I have lived a healthy life, excercise and eat well (vegetarian, tho I love good food...but am not overweight).
My stress history: 2,5 years of extremely bad nights taking care of my very allergic son who wakes up 3-30 per night every night. I've been a stay-at-home-mom for those 2,5 years now and my hubbie has not been very happy with the amount of money I bring to this household. He has been severely putting pressure on me on going to work or studying to get a degree at the univ. This is why -- even tho I am really deprived of sleep -- I decided to take new courses at the univ this year.
Before they started in january my husband suddenly announced in December that he was leaving me and my son. It was a huge emotional stress factor. I can't even tell you how it affected me. Being from a broken home I never wanted anything but a "normal" family for my children (it now seems I will only have one...).
Just after a few weeks after his announcement my studies started. Had I been wise I would have dropped them right then and there. But I'm very stubborn and like to finish what I've started.
I immediately noticed that the quality of my life started to wear down. I studied most of my freetime and the rest of the time was filled with chores and taking care of my son. And worrying about my family and how we would end up. (My husband eventually stayed with us but...I do not know for how long).
The situation got worse and worse while my studies took more and more of my freetime. I'd been telling my husband for 2 years now that the lack of sleep will make me sick again (I've already had an ulcer and IBS from stress). This year I told him that my body can not handle all of this.

A week after I turned 30 I was in pain all day and all night. And soon was diagnosed with IC.

I can not say how relieved I was to hear that with Elmiron one can eat anything. I want that med too! And I pray on my knees every day that they will find a cure for all of us. I don't want to live like this for the rest of my life.
I do not know if Elmiron can be bought in Finland. Must ask my doctor. But was it Elmiron that made one's hair fall off? Don't want none of that, no.

Miu

[Kathleen Philli]

Wow, I can't believe how many people here have had so much stress that is linked to flares of their disease. My guess would be that the constant stress causes a hormonal response ( adrenal gland) that in some way alters the immune system. I hope someone tries to figure out the mechanism and perhaps some day we could use this knowledge to prevent flares. I have come to learn that there will always be stress. I'm sure I could handle it better, but some things are just too big to meditate away. For instance, after I had been diagnosed with IC, a few years later, I suddenly became ill and was diagnosed with a very agressive form of Lymhoma. This was all the more horrifying since I was about 10 weeks pregnant. If you think IC is bad, I'm here to tell you there are worse things. My Mom died suddenly while I was getting radiation treatments and of course my IC went crazy. I give all you gals a lot of credit for going through so much and remaining positive.
A few people responding here have not tried Elmiron and have some questions. Elmiron went through FDA trials and took a long time to get approved. One of the reasons for this is that it does not work for even half of all IC patients, so the numbers going through the trials were far from convincing. About 30% of patients will respond positively, and right now no one can say for sure who will and who won't. It takes at least 3 months to work, and maybe even longer to reach its maximum benefit. For me, it was a slow but steady course and I think at about 4-5 months, I was 90% improved.
I have had very few side effects, but my uro tells me that many women complain of hair loss. Now that he mentiond it, I may notice a few extra hairs on the bathroom floor, but I am far from bald. I have already lost all my hair in order to save my life, and if I had a choice I would gladly give up my hair if I could be cured of IC. For anyone who has not done a full (6month) trial of elmiron, and is still out of control, it is probably worth a try. You may be one of the 30% who respond. For the gal who lives outside the US you would probably have to be seen here in the US to get a prescription, and unfortunately importing the drug could get costly. I am seeing here that many are responding well to the rescue instills. These are not too expensive, particularly if you can learn to do it yourself. This would seem to be the next step if you can't get, or don't respond to elmiron. Good luck to all.

[runningshoe]

I needed to add my thoughts...although I am far from clear about what actually took place in my body....but I am in my first flare in 12 years. It is the worst. It started in Feb. This was 3 months after the start of an autonomic dysfunction that cause my body to be in overdrive. So that speaks to the stress theory. Also found out that I am totally in menopause, very very low estrogen. Ovaries never woke up after hyster. So that speaks to the hormone connection. I wish I could find a dr that could help me piece it together....I have had some better days lately know that I am on the patch and auto dysfunction is controlled. If we stick together we will solve these mysteries!

[Kathleen Philli]

Wow, a 12 year remission, that's fabulous. Did you take any meds or follow a diet while you were in remission? What dose and brand of patch are you using. I need to find a gyn who at least knows what IC is so that we can decide if I should get off the pill and start HRT. All my uro's are men and will not address any estrogen issues at all. Many women on this site also had a bad flare after hysterectomy. You might start a thread where you ask them what got them quieted down. I went for a great massage today. I feel better than usual. Perhaps this is a way to lower my stress hormones. I think I will try a series of them.

[runningshoe]

me again - the 12 years of remission was after about 5 years of living with IC and taking elavil and being on the pill. I stopped both to have kids and have been completely ic free since I guess about 1994. I had three kids, 5 kidney stones and a hyster with no problems until this year. I ate everything, drank coffee and ran miles. I guess I got too used to being well....I would have occasional twinges or aches but nothing major. I am using the vivelle .05 patch. This reoccurence has rocked my world. I think I cried more in the past 3 months than in my whole life! Uro and gyno have been somewhat helpful but a great psychiatrist has helped cope with the two illness (auto dysfunction). He keeps track of my meds etc and helps me sift through the maze of medical craziness. I am taking 30 mg of elavil and trying to stick to the diet.

I hope everyone has a good night!

[Dewshine]

I am very sad to hear that after such a long time of remission you are in a flare now! It must feel awful.
I was just diagnosed with IC and I am trying to do the upsetting diet (I am also lactose-intolerant and vegetarian). And I'm still in pain every day and night. I wish I would go into remission. I have had to stop running and swimming but have refused to stop biking because I love it so (and we don't have a car).
I also bought the book "Solving your IC puzzle" (or something like that). I am quite discouraged with all the advice and the even smaller diet suggested. Plus all the examinations for parasites etc that I do not know where to get them here in Finland. But I am also couraged in some ways because the book made me understand how I have made myself sick. My lifestyle, the things I eat (altho I thought I was being healthier than most with the vegetarian diet) etc.
I had IBS before IC but it totally disappeared after my pregnancy and has not come since (3 years without symptoms). Do you think your pregnancies might have actually been a good thing for your body?
I know I should've understood after I got IBS that I should change something. But the doctors just said "it comes and goes". Now I understand that it comes and goes and the body gets worse if you do not change the way you live.

Hope you'll get over this flare soon and go into another good remission for the rest of your life! This syndrome really is a stinker.

Miu

[mary124]

Katherine- i just saw that you were asking me a question (I think it was dated back on the 22nd)- Yes at first the doctor put me on Premarin(?) but he took me off of it because of all the uproar on it with breast cancer (I think that was it-can't remember now). So now I'm taking Effexor-XR. Helps with hot flashes and IC pain.

[ABliske]

Mary,
You're the only person I've really seen mention Effexor. I have been on it for almost a year and it seems to help. Did you get really sick from it at first?

[mary124]

Katherine: No - can't say that I did, the doctor started me on a low dosage of it I think it was 37.5mg now I on 75mg. It has really helped me in the long run. I know my friends doctor put her on Prozac; I don't know what dosage. But they are finding that an anti depressant works for hot flashes and post-menopausal symptoms. Might ask your doctor.

[glassd18]

I'm sorry you are flaring. I have not had a pain free day except for 3 days at the very beginning of this nightmare that started back in Jan 06. My husband thinks that this disease is very stress related after witnessing my symptoms go up and down he has noticed a pattern in me that when I'm stressed it gets worse. I was under a ton of stress when this disease showed up. Funny enough when I take Ativan I feel much better. I also think it has a hormonal link too. I hope you (and all of us) get back to your remission.

Di

[marsi4]

My heart goes out to you and pray you can get into another remission. I have had ic all my life, over 35 years and would like to say that in my case it wasn't brought on by poor eating habits or a bad diet. Stress can cause many illnesses and breakdown the immune system but I don't think that stress alone can cause IC. I know many people who are over stressed who didn't get afflicted by ic, but then again not all bodies are the same or have strong immune systems. I have endured a lot of stress in my life, and if I didn't suffer with this condition since my childhood I would be inclined to believe that it was brought on by stress. I don't think this is true in my case. The point I'm trying to make here is to not stress so much over what you are eating because it will cause you a lot of frustration and discontent. Just avoid fruit and juices whatever is very acidic and anything else you know makes you flare. If you are suffering with Ibs as well, as I am, there is very little we can eat which would render us very unhealthy and weak. I was terrified to eat at all when I had a severe 2 year flare and it really affected me psychologically and emotionally along with all the pain and suffering from all my symptoms. I practically starved myself, and watched everything I ate and it still took a very long time to get better. Today, I eat most foods and I do not fuss so much about what I eat. Flares will happen no matter what. If you have IC you are going to have flares. Diet does help to control this disease and make it more bearable and manageable, and perhaps prevents you from having severe flare-ups, but it didn't keep me in remission.
IC is a complex disease to understand and treat. It is very stubborn, and persistent. I pray for better treatments. I am at my wits end and are considering surgery, because pain meds do not work anymore. I pray that everyone afflicted with this condition can find something that will ease their pain and suffering.

Marsi4

[Dia]

I was on Elmiron since late 2006 and was feeling very good. It took awhile for it to work but it did relieve my symptoms. It also made me lose nearly all my hair! So I decided (on my own) to stop taking it since I was feeling so good, I could eat again and had no pain. That was on May 22,2007 Not even a month ago. Yesterday I started having severe symptoms again, needless to say I started the Elmiron again. I was reading all about Cystoprotek and I wonder if it can take the place of Elmiron. I want to take both until I feel well again, then give up the Elmiron and just keep the Cystoprotek. Does anyone have any experience doing this?

Good luck to everyone.
Dia

[Kathleen Philli]

I am also trying both elmiron and cystoprotek. They say to just take 4 cystoprotek when you are on elmiron. How much elmiron were you taking? if it was more than 3 a day, then the first thing to do is to cut back on elmiron to 3. Dr. Parsons in San Diego knows the most about elmiron and has had patients who have been on it the longest. He claims that in some patients, the hair will actually come back after a while. He also now adds hydroxyzine to most patients, and you should ask your uro to try this. I have seen one post from a gal on this sight who quit elmiron for the same reason as you, and claims that she went into remission after one dose of cystoprotek. If she did, it was not from the cystoprotek because this typically takes 3-4months to work. The studies I have seen on cystoprotek show that many patients improved on it , but I did not see any talk of total remission, like you had with elmiron. The only way you will know is to try, but you probably should take the cystoprotek for the recommended 3-4 months before trying to wean off elmiron. Another thing that you should consider is having elmiron instilled directly into the bladder. That way, no hair loss. But, the majority of people who are controlled with instillations must do them several times per week, and some every day. This would mean that you would need to learn to insert a catheter into your bladder. Lots of people here do it. Losing your hair is a very traumatic thing for a woman, but it is up to you if you feel the trade off is worth it. I have only heard of the one gal who does well on cystoprotek alone, so if it were really so great, I think there would be many more. Good luck to you.

[Dia]

Kathleen,
Thanks so much for that complete and helpful reply. So it doesn't look like the Cystoprotek is a miracle cure. I didn't know that Elmiron by instillation doesn't cause the fallout either. I don't know if I could do the catheter thing, but I never thought I could give myself insulin shots at one time and I'm a pro at that now. Thanks so much for the advice. I will discuss it with my not so helpful urologist. The hair loss is such a cruel add on. I was only taking one Elmiron a day at the end after starting with 3 a day. So other options may help.
Thanks again.
Dia