Dare I say the "R" word???

[Janie Miranda]

Hi everyone, at the risk of jinxing myself I wanted to share the good news with you ... I believe I am inching towards remission! Last December and for quite a few months after that, I was in constant pain, and seemed like every food and medicine I took made the pain much worse. In mid april I went on elmiron, and within a month or so I could tell a slight difference. A few months later I added daily dose of claritin and hydroxzine and that seemed to help too after I had a bit of a rocky start getting used to they hydroxyzine. Then just about 6 weeks ago I added vagifem (HRT) and it seems to be the icing on the cake for helping me get better! I'm post menopausal and I guess there must have been some hormonal component to my IC - as well as an allergic component since the antihistimines help too. Anyway, I just started realizing how much better I feel - how much less I think of my bladder and how I am able to eat things that I couldn't tolerate even a couple of months ago - like potatoes! For some reason I was one of the weird ICers that couldn' eat a plain old spud without increased frequency and urgency! I also found out it is true what they say here on the boards, people who feel better often don't frequent the boards as much. Since I started feeling better I've been out participating more in my favorite hobby, photography.Anyway, keep up the hope and faith and i'll pray that each of you begin to feel better too, really soon.

PS. I will still be around the ICN because I love the people here and found it to be a very important part of my recovery. Thank you Jill and all the moderators and nice foks from the ICN boards who have helped me and been so supportive. You guys are all the greatest!

[Sarojini]

WOW... I am so so happy for you!! :) I am so glad that your meds have helped so significantly and that you now find yourself in re******* (I won't say it either, so you won't be jinxed from me ;) )... LOL...

[emilyrose197377]

Janie, I am glad your feeling better . I am so happy for you.

:grouphug:

[vm]

That's wonderful and I am so happy to hear that you will be sticking around. It is so important for newbies to read about people who are doing well. :)

[diane57]

Janie girl (my Elmiron buddy), congratulations! It's so true that people who feel better don't post as much. I still visit the ICN almost every day, love the people here, but I haven't posted much lately. I started Elmiron in April just like you, and I take Elmiron and quercetin only. Like you, I started noticing an improvement within about a month, had a couple of discouraging bumps along the way, and now at the 6-month mark I'm so drastically improved I barely think about my bladder and am also adding in more and more foods. We should do a commercial for Elmiron! I hope our the-word-that-dare-not-speak-its-name continues for both of us. Please keep coming to the ICN, though, you're such a great person and I love reading your posts! Take care.

Diane

[massagedoula]

Janie,
First off I feel like you are MY Elmiron buddy too...even though I started way after you. You always replied to my posts, and gave me something special....hope.

I am SOOOO glad to have signed on this morning and read this post from you....
I hope that you feel better and better until you feel like your normal pre-IC self.

I have been on Elmiron for about 5 weeks and can say that I have definite improvement too...I just need to get over these side effects!

I do hope that you stick around...I will miss you otherwise!

PS, Your photos are AMAZING!
-Emily

[SharonA]

This is fantastic news, Janie...and Diane, too. Emily...you're included in this, also. It is always good to hear good news. :dance:

I, like you, feel pretty good most of the time, but continue to come here to catch up with everyone and lend an arm or a shoulder when they are needed. I don't know what I would have done without the people here when I first began this journey. I am very happy to return the help whenever I can. :)

[massagedoula]

Hi Sharon,
Thanks! What are you doing/taking to feel good most of the time!

Diane, I forgot to include you in my last email. It was you that gave me the courage to try Elmiron in the first place, if you remember the emails I used to send you asking you questions about it.

Thanks alot! :)

[tigger_gal]

yeah.. I am so happy for you.. I really hope that things keep going in the "R" direction...

[ICLori]

That's wonderful news! I am so happy for you and I pray the remission lasts forever!

Blessings, Lori

[SharonA]

Emily...to answer your question about what I am taking or doing. I have been on Elavil 25mg since January 2002. It is responsible for my turn around toward to feeling better.

I also have learned that I have to avoid most everything in the citrus department. I can get away with drinking a tiny bit of orange juice every once in a while.

Another major trigger for me is stress. I try to stay as clam as I can. Doesn't always work. Like when my hubby needs me to drive by myself somewhere new and in heavy traffic. Watch out...Sharon's on the road. Keep your children off the streets. :D

[diane57]

Massagedoula, thanks! We have had sort of parallel experiences, trying the alternatives, then bringing out the big guns. I'm hoping so fervently that your headaches go away and Elmiron continues to help you, or that you find a really great alternative.

[Britgal]

Hi Janie, so glad the r...... word is in your vocabulary, I know the feeling, I also believe the same has happened to me. I have not been posting as much as I used to, in fact I find I am listed now as Britgal, I was orignally Iris, so have posted a lot more than is listed. Once again congrats, and superb photography, thoroughly enjoyed seeing your work. Congrats to you, and may you enjoy your wonderful r......... Hugs to you, Iris. :woohoo: :grouphug: :flower:

[Janie Miranda]

Thanks again everyone for you kindness, support and friendship! :-)

[massagedoula]

Janie and Diane,

Since you both are my "Elmiron idols", I wanted to quickly ask what the dosage of Elmiron you both are taking is....

Also, do you both have NO symptoms and feel like normal people, or has your symptoms just gone down so much that you can deal easily with the feelings...

With Questions for my idols,
Emily (Your biggest fan)

[Janie Miranda]

Emily,
My doctor has me on six pills a day. The dose is divided into three in the morning and three at night.
As far as my symptoms, I have no frequency and urgency now -- but that wasn't my worst symptom anyway unless I was having a UTI or UTI like flare (then I had terrible urgency/frequency/pain).
Pain was my worst symptom and for months I had really bad burning pain. I spent hours under a heating pad or in a hot shower trying to alleviate my pain. If I took meds like urogesic blue/ or pyridium my pain became excrutiating. When I was at my absolute worst I would lay in bed and tremble uncontrollably from the pain. Now I have virtually no pain unless I sit for prolonged periods and then I have a little lower back pain. It just doesn't feel like bladder pain anymore and it is very mild and infrequent.
I don't remember if your main symptoms were frequency/urgency or pain but I remember reading something Dr. Parson's wrote about how Elmiron works - he said that with IC, that pain is often the last symptom in (after years of frequency/urgency) and the first symptom out (to go) with Elmiron. To me that meant that it takes longer to work on the frequency/urgency symptoms. maybe someone can correct me if I'm wrong.
Good luck with elmiron and keep us posted on how you are doing! I would love to read that six months from now you are feeling great!

[mags]

Congrats on your remission! i too have been feeling better since going on amytriptiline. i only take 5 mg but can feel a difference, i rarely ever hurt, unless i over do it with coke! I still have some freguency, so i'm not in remission, but feeling better.

[diane57]

Emily, I take 4 Elmiron pills a day - 2 in a.m., 2 in p.m. I try to take them on an empty stomach but my uro is one of those who thinks the empty stomach rule is not so important, so I don't always totally follow that rule. With my worst IC attack, I had very little frequency (maybe 8-10 a day, never at night) and just slight urgency, but I did have moderate to almost-severe pelvic pain and pressure, burning and a sort of bladder-nausea after urinating, abdominal tenderness, some vaginal/perineal discomfort. The pelvic pain was the worst symptom, I felt like my bladder was swollen, every movement hurt it, many foods made it worse. Now I'd say that 80% of the time I have no bladder symptoms whatsoever, my bladder feels totally normal; the other 20% of the time I have just slight twinges after urinating, a slight feeling of pelvic pressure when the bladder is full or with the wrong food, but these symptoms are pretty easy to ignore. My frequency has gone down too, to maybe 6-8 a day. I'm being more and more wicked with the diet and not noticing much of an effect, which to me is the greatest indication of progress. I still have slight abdominal tenderness, I think that symptom will be with me for quite awhile, but I can work around it.

I have also heard that frequency/urgency typically appears before pain (in my case that wasn't so, but I guess I'm atypical), and so I'd guess that pain would be the first symptom to go away, and frequency/urgency the last to leave.

Hope this helps, and hope the Elmiron works for you!

Diane

[marsi4]

Great news Miranda. I wish nyou can feel well forever. You have given all of us hope and I'M going to continue on the Elmiron and hopefully feel better soon too. Go out there and enjoy life and do all the things that you could not do for a while. I guess there is life after ic. I hope everyone suffering from this disease will find something that will give them relief and be able to regain their lives.


Hugs,

Marsi4

[Oxana]

It's wonderful, Miranda!!! :woohoo:
I wish you feel well all the time!

[icsonja]

:woohoo: :woohoo: :woohoo:
ALLRIGHT MIRANDA
Love to hear good news, makes me keep on fighting to post here too!!
This post made my day. :love:
Sonja

[corena]

Imipramine: Anyone have fast heart rate and palpatations on imipramine. I am only taking less than 5 mg. Also, do any of my IC sisters have lower back pain or shoulder pain with IC. I do have as well as pelvic pain and pressure, urgency and some burning.
Forgot to say that I feel some type of ticking, spasam at the top of my urthrea...a feeling of being unwell all over my body. WOW...this really sucks, girlfriends! But, I do pray a lot.
Please respond.
Prayers from Boston

[Janie Miranda]

Hi Marsi, sonja, corena, and oxana,
glad my little story has given some of you hope! Definitely don't give up!

[corena]

My prayers are with you from Boston,
hugs, Corena

[Annie2]

Janie,

I'm so thrilled to hear you are doing so well! Thank you for posting your good news. It is so important for those newly diagnosed to read success stories and see for themselves that most of us do find treatments that work for us. Giving hope to those just beginning an IC journey is the greatest gift any of us can give.

Hope this improvement is permanent for you!

[ladybug23]

So glad to hear people are doing well on Elmiron. I've been on it about 2.5 weeks now. I had been noticing a difference, but I recently had a flare up the past 2 days, which could have been because I was being more liberal with my diet since I was feeling better. If anyone has any diet suggestions I'd be so greatful because since this started I've lost 12-15 pounds (not necessarily a bad thing hehe) cuz I'm so afraid to eat almost everything. Thanks.

[Plush]

How wonderful for you!!!!! Enjoy each and every day....
Hugs,
Plush

[sami4]

So very happy for your remission and for what its worth; it I dont use estrogen cream vaginally every night, I get urethral and burning symptoms the next day. Sometimes people are allergic to the proponyl in Estrace and have to get compounded Estrogen cream from the pharmacy. Estrace works great for me.
Another weird thing; the last two urethral soreness and redness, burning, I took a Diflucan and it cleared up the urethral symptoms. What was odd is the doctor said my vaginal smear did not show yeast or anything. Yet when I went home and took the Diflucan everything cleared up. I wonder if some of the urethral problems might be due to low count yeast which I am sensitive to? The estrogen keeps the vaginal PH in a good acid range which keeps this yeast in check. Makes sense to me.
Sammie

[Janie Miranda]

Hi Sammie,
I tried the Estrace early on when I was in a lot of pain and it seemed to make my symptoms worse but at that time it was hard to tell if it was the Estrace or something else. Since I wasn't sure the doctor put me on vagifem. I only use it twice a week. I would actually like to try the estrace again though because I would like to do the hormones every day! I really think they help a lot!

Hope everyone had a great thanksgiving and nobody flared tooooo badly from all the holiday goodies.

[ellienor]

I have been much better now too. Only peeing 4 - 6 times per day.
I think it is the natural stuff and my estrogen - estrodile cream i am using in the vagina.
I was taking progesterone cream for 2 years to make me sleep, then i went thru menopause 1 1/2 years ago. Well i think i had too much prog and not enough est. This can irritate the bladder they say.

my gyn gave me some testoserone cream to put on the pereostium at night. She said this helps the bladder too. Plus helps my sex drive.

So I cut my prog dose in half and added the Estrodile. over the past 2 months i have slowly gotten better than ever.
I still feel my bladder just a bit in between, but I can live with this easily!!

NOwI am able to eat a fresh orange from my tree and drink carob tea in the morning with soy coffee creamer,, so I am very happy.
I take 2 mg of elavil, got off the atarax a month ago. Taking 2 proteck per day and lots of L-arginine and quersitine still. Plus colostrum and omega 3 fish oils.
Hope this helps someone.
Ellie

[Oxana]

ellienor, I am very, very happy for you!!! :woohoo:
I wish you feel well all the time!

I think that hormone level is very important in IC. I noticed that I feel myself much better during period and days before ovulation.

Two quiestion, please, did you check your hormone level before taking the medicine?
I'm 36 and not premenopause yet, but want to check the hormone level just in case.

You void 4 - 6 times per day or it's including night too?

[sami4]

Be careful with the progesterone after menopause as it can really stir up IC problems. Estradiol is soothing and helpful and the bladder is full of estrogen receptors.
I know some of you are still in the Dr. Lee thing, but his theories have been largely disproved by systemic studies which he never did. The thinking today for menopausal women is the less progesterone the better, just enough if you have a uterus to keep you from getting too thick an endometrial stripe and preferably vaginal administration. Medicated IUD are currently in the wings so systemic P will not have to be used unless you want to cycle every month.
Sammie

[massagedoula]

My IC really is not related to hormones at all. I got tested twice for hormone levels/thyroid and all is fine. Plus I am far from menopause (only 25) and have no history of flares corresponding to my cycle. Am I strange here? Does everyone else feel that their IC is related to hormones?

[diane57]

Massagedoula, that would be an excellent question for a survey - how many feel their IC is hormone related? For me I definitely feel that way - I get a flare around ovulation and during the PMS week, but after my period starts, and for the FEW days between the ovulation flare and the PMS week, I feel relatively normal. I'm cautiously looking forward to menopause (I'm 48 now, which probably exaggerates all hormonal activity) and hoping that my IC will improve when my system is not being buffeted around with estrogen and progesterone...

[Janie Miranda]

diane,
I hate to dash your hopes about menopause helping . . . that is when my IC went into overdrive. I've been put on Vagifem HRT and that has helped my IC along with the elmiron and hydroxyxine.

[ellienor]

Oxana:
4 times today - it is 10:00.pm.
I will go again now, then at 2 am, then sometimes at 5 am,, sometimes not.
When i go it is a normal feeling and I pee 2 cups.
I remember how it was before ic and this really feels normal.
When I go 2 cups +, I dont even realize that my bladder was that full!

I dont know if this is hormone related or not.
all i know is I was ok with the progesterone cream for over a year.
Then I stopped my period in may of 04. I kept taking prog, but no estrogen.
my ic started in may of 05. My symptoms really improved in october 05 when i started the estrogen. It may be a co-incedence.
Yes, I did have my levels checked and i was low on estrogen, ( bottom of the normal range ) and prog. level was normal. Now my estrogen level is:

Total estrogens 117
Progesterone: 2.6

I tried to look on the internet to see what these levels mean, but no luck. Does anyone know?
It says i am in range... but I dont know high or low range.
thanks

[Oxana]

Thank you, ellienor.

I had meeting today with support group in my area with pharmacologist and urologist. We were talking about hormones too. Low level of estrogen and high level of progesteron can cause symptoms for IC patient. It was exactly happens after ovulation before period. When progesteron level is up higer as estrogen.

[purpleviolet]

Hi - I'm like Massagedoula - I really didn't see a correlation with periods. I don't know why. I didn't feel great during pregnancy though like some do. But I did get through it. Afterwards during breastfeeding I felt sort of OK. PV

[sanctuary]

I saw that word...and at after 1Am, hope I can spell it, but great news for you. I tried Elmiron many years ago and the side effects bothered me too much, increased migraine unset stomach, really bad urinary retention so bad it felt like I would burst..Is this the side effect you all mean? Long story short, all I have now is pain meds which are hard on everything else, like drive, and feeling much, when they work. I could understand the burning and the frequency, I still had bad days before the Insurance company made my life hell again by making me switch meds. I haven't been in here for about a year perhaps or more... I felt better with the Duragesic patches, but now the Insurance company has made me use the generic, and it's night and day. I am in hell here. I wish I had tried the Elmiron longer. How long did you all have "side effects" on elmiron? I couldn't stand the pain, which has always been my biggest problem. I still have 50+ times a day to go and can't sleep more then 2 hours at any given time. I'm so happy to hear someone is better. You must be celebrating big time. I would be. I wish I didn't have to take pain meds all the time, and not this strong, but we've tried everything else and every pain med right now. This is scary to know if I can't take the generic they will make me figure out myself what else we could use? Even my MD doesn't know whatelse to use. I feel so happy for you, but no doubt you do too..Good luck, you really are blessed. sanctuary

[massagedoula]

Sanctuary,
Other than mild hair loss, I really have not experienced any side effects from Elmiron. My uro told me that it is generally well tolerated, with most common side effects loose stools and GI upset. That can be helped by taking the medicine out of the capsule. Maybe you could give it another try? Perhaps the side effects could have been transient or related to another medicine or something environmental? It may be worth a try. If you have side effects again, you can always stop. Just my 2 cents because Elmiron has been almost like a magic pill for me. If someone else may be able to feel good from the medicine too, I would hope they have a chance as well.

[sanctuary]

I was diagnosed in 1993..and have not tried anything besides pain meds since then..They took 5 years to figure it out, and at that time I tried pages of meds to help myself, as well as Chinese medicine, Chiropractor, Accupuncture and Hypnoses...too many unusual way to recall now 10 years later...:-)
but when I finaly got to a Urologist she helped and knew right away after a distention it was IC.....I'm afraid of the pain the most. Did I hear someone say that was better after the elmiron worked? How long do you have to suffer hair loss...Goodness, mine is down to my butt :-) and it's what my granddaughter knows me by. I'd hate hair loss, whatelse? I recall migraines. and except for the L'Argeneine (spelling) that they had me using as an experiment with Yale, nothing but pain meds were in the mix at that time. I wonder if my Insurance would pay for it again given it failed before..I hate Insurance companies. I've heard of people on welfare getting better treatment then I've had with two Insurances...thanks for writing back,,can't sleep either? take care and thanks sanctuary

[massagedoula]

Its still early on the West coast....
So, the hair loss in Elmiron is mild. I notice that I am losing more in the shower and when I brush my hair, but no-one else can notice. I have my husband looking at my head all the time and he says that my hair looks exactly the same as before I started the Elmiron. So don't worry about the hair loss. It is very mild. For all that it had helped me, it is a fine tradeoff, a few hairs for an (almost) normal life...hoping for a totally normal life in the future....

[Janie Miranda]

Sanctuary,
I hope and pray you'll find something to help you and that will ease your pain. I've been on elmiron for 8 months and it has helped me tremendously. My main symptom was pain . . . a constant burning pain. After a few months on elmiron the pain had dropped considerably and I now have no pain at all after being on it for 8 months. I know it doesn't work for everyone but it would be worth giving it another try if you can. My doctor put me on a pretty high dose. 3 pills in the morning and 3 pills in the evening. I don't know if that is what made it help me so much and so quickly. Good luck.

[sanctuary]

Thanks, last night the generic patch caused me to pass out cold again and I must have banged my head pretty badly. My Urologist in on vacation, my PCP is on maternity leave, (going on two years w/no back up) and short of going to an ER, I am as they say "on my own here".
I've never been so scared or so much in hell since when I first got out of surgery and they "forgot" to give me post op pain meds. The hospital at the time was, "very sorry, and tore up the bill"....but this didn't change what I went threw. The headache I have today with this black eye hurts a lot and so does the effects of this generic patch on me. My skin has developed a bloody rash. The bladder is shut down cold andI can't empty it until I take this off and wait 8-12 hours! My Urologist claims, It's Ok?????
I went through child birth and not one mark, now my tummy is a bloody cut up mess, and so my body fee;ls like this too. The patches don't work as well on me elsewhere, I've tried in the past. The brand name Duragesic never gave me this trouble. I just put the generic patch on again last night, and short of going "cold turkey" what can I do? If it weren't for this board and all of you to know how IC is, I don't know what I would do. The saddest part is that before this happened I had a life! I wasn't in here for almost two years and I just got married! How can I expect this to last or be fair? For Insurance compnaies to be able to just force this change on me when I was fine before should be illegal, but their bottom line is not life, it's money. They could care less if we live or die as long as they save money. I'm going to call my old Therapist for some back up here. I haven't felt this bad in 10 years. I'm not sure if I have a concussion or not, but an ER is for "Life threatening injuries", not a banged head, right? Plus the co pay is a killer. Thanks to all of you for being there. This site is about all I have right now for support. hanging in there, sanctuary

[ibtracy]

I hope you keep inching towards remission. You're an inspiration to the rest of us. :grouphug: :woohoo:

Tracy K.

[Portia17]

I am so happy for you that you are in remission. I, as well have been in remission since May 2005 thanks to dmso and pain meds

Great news for you

[Janie Miranda]

Well, when I started this thread I said I thought I was inching towards remission . . what I realize now is that I was just in a very carefully controlled state. I've figured out the reason i feel so much better is that I have some good meds that help a lot and that I am careful about the diet and not to do any thing that makes me worse. I realized today though that this technically isn't a remission . . . I went for a walk and the light exercise made me have a minor flare up. Just an increase in minor pain not an increase in frequency/urgency. I get some other little flare ups when I eat the wrong thing or get stressed too.. . and we won't even talk about the flare ups from sex. But anyway, what ever I want to call this . . . I am soooooooooooooooooo much better than I was last year. If things stay the way they are now, I can lead a very happy and mostly comfortable life. I hope that even though I'm not technically in remission . . . the fact that I am still feeling so much better can still give some of you who are suffering out there some hope that the right combination of meds and treatments will help you too. Hang in there, my IC friends. You guys are always in my thoughts and prayers.

[diane57]

Oh Janie me too me too. (Does it drive you crazy the way I always piggy-back on your posts and never start my own???) I got so sort of cocky about how good I was feeling, I really felt so close to normal, and then about a month ago my symptoms got a little bit worse again and I'm stuck in that little-bit-worse mode now - every day my bladder bothers me a little. I realize how lucky I am to not be in the pain I was in about 18 months ago, but I really thought that with Elmiron I would keep improving and improving until I was totally normal. Now I'm a little discouraged. Of course, I've been more and more free and easy with the diet, so that probably has a lot to do with it. I was so hoping that I wouldn't have any dietary restrictions at all, but I can see that's not gonna happen any time soon. BIG SIGH. The last time I saw my doctor he said not to hope for perfection, the goal is just to decrease the symptoms slowly, inch by inch, over a long period of time, and to expect flare-ups from time to time. Anyhow, I hope these set-backs are temporary for both of us, and that the Elmiron will keep on improving us for a long time to come. Happy holidays to you!

[massagedoula]

As the self-declaired 3rd member of the Elmiron triad, I have to chime in here too. I was getting better and better over the last month (month #2 of Elmiron therapy) and hoped that eventually after being on it for a long time I would get where you two (Janie and Diane) are. Then this month (month #3 of Elmiron) my frequency has slowly crept back up and so has the nocturia. The pain is still manageable though, so I know that things are much better than they were, I truly do.

I have been wondering if maybe the stress of the holidays (I have ALOT of family staying at my house) or the Vitamin D suppliment I started taking (for a Vit. D deficiency in my last bloodwork) has started things rolling uphill. I still don't know, but after reading your posts I am guessing that there is a natural ebb and flow to IC and even with Elmiron we will still experience that. But it is muted, and not as severe as it was for all of us when we were not on the drug.

Here's a wish for us to all get to the ebb phase again soon,
Emily

[sami4]

How much did the Elmiron help the nocturia? How many times a night were you going and how many times now that it is creeping back?
I pee 3-4 times a night regardless of when I cut off fluids and it is a big pain. I go about every 2-3 hours so I only sleep about 3 hours at a time. I swear I can get up and pee in my sleep.
I was started on Enablex which I hoped would help with this, it does with daytime (which wasnt a huge problem anyway) but not nighttime.
I took some of my sisters anti anxiety a few nights to see what that would do and it cut the peeing down to 2 times a night.
I am going to see a urologist this January for a consult, but if they want to put me through a whole bunch of miserable tests to tell me I have mild IC, then I wont go back. They can only control symptoms anyway, so if your case isnt that bad I just cant see upsetting my already cranky urethra, bladder with a bunch of tests. I have already had cancer tests, ultra sound and so on to rule out stones or cancer. That urologist said I probably had mild IC and he didnt recommend any more tests. Unfortunatley he is not in this state. He put me on Enablex. I had trace blood in urine but no growth on numerous smears.
Sammie

[Janie Miranda]

Hi Sammie,
I go 0 times per night. The hydroxyzine is what has made the most difference for that. Hope you find something that works to help you sleep and not get up at night.

[PlainJane]

How much did the Elmiron help the nocturia? How many times a night were you going and how many times now that it is creeping back?
I pee 3-4 times a night regardless of when I cut off fluids and it is a big pain. I go about every 2-3 hours so I only sleep about 3 hours at a time. I swear I can get up and pee in my sleep.
I was started on Enablex which I hoped would help with this, it does with daytime (which wasnt a huge problem anyway) but not nighttime.
I took some of my sisters anti anxiety a few nights to see what that would do and it cut the peeing down to 2 times a night.
I am going to see a urologist this January for a consult, but if they want to put me through a whole bunch of miserable tests to tell me I have mild IC, then I wont go back. They can only control symptoms anyway, so if your case isnt that bad I just cant see upsetting my already cranky urethra, bladder with a bunch of tests. I have already had cancer tests, ultra sound and so on to rule out stones or cancer. That urologist said I probably had mild IC and he didnt recommend any more tests. Unfortunatley he is not in this state. He put me on Enablex. I had trace blood in urine but no growth on numerous smears.
Sammie

Hi Sammie!

I can relate to the nocturia. I usually get up 6-8 times/night to pee. I am so fatigued during the day. I haven't found anything that has helped it yet.

Erica

[ICLori]

I hope so much you guys continue to get better and better, and that if you do have small flareups, they won't be nearly as bad as what you once had.

Blessings,
Lori

[sanctuary]

I just wanted to wish everyone a Happy New Year, and share some (rare for me lately good News:-) The Insurance company finally gave in and now they will allow me to go back to my (brand name) Duragesic patches, instead of those awful Santos generic brand which over dosed me and made me sick. The Insurance company had said I had to try the generic patches for those who didn't know, and I suffered a lot until I got mad enough to appealed and so I wrote the Insurance company a letter and appealed t the MD in those who reviewed the letter.

I explained IC and how some generics had FILLERS, BINDER, COLORINGS, PRESERVATIVES ETC. ETC....and that we people with IC have issues with this JUNK and I explained how sick it made me. They will now let me use what had previously worked for 2+ years perfectly until I changed Insurance companies.

However, my doc is gone......yup, you guessed it VACATION!!!!.......
and when I called to get the precription refilled for the new patches....They told me, "Well, you've been on them a few weeks and what's a few more days...."

Can you believe these people?????? I went over "her" head and asked to speak to: "Someone who actually CARED about us"....and got another Nurse...who got the 2nd MD in that Office ( on call) to write the RX for the Duragesic for me, and she said I could pick it right up...

The lesson here is, stand up for yourself, don't take no for an answer when they are not qualified to give you what you want anyway:-) Nurses can't write a prescription like that one anyway...Happy New Year, may you all have a flare free holiday. Hugs and best wish sanctuary

[Janie Miranda]

good for you sanctuary! I hope you'll be able to start feeling better again really soon.

[Janie Miranda]

Hi everyone - sometime back I started this thread saying I was "inching towards remission". I thought I would post an update.
After being on elmiron almost a year, adding hydroxyzine, vagifem (HRT) and acidpohilus capsules - at the risk of jinxing myself - I think I have "made it" to remission. I now feel like the really awful time I had with IC a year and a half ago is like a bad dream. My symptoms are virtually gone and I've been able to go back to a far more normal diet. In fact, I've been trying new things just to see what I can really eat . . . things like peach pie, chocolate, pecans, bananas, and low acid coffee. These were all things I either couldn't tolerate even six months ago or I wouldn't have dreamed of trying. I'm not going to make a habit of eating such no-no foods but I am no longer going to live in mortal fear of accidentally trying a bite of something I shouldn't eat. I have to tell you it is a big relief. There are some other, more personal aspects of my life that have become pain free again too. I won't go in to those but I'm sure you can guess. So anyway, I'm writing this only to show the new folks that things can turn around. Don't lose hope! A year and a half ago I lived in constant burning pain and my life was spent on a sofa huddled up under a heating pad. Ever so slowly, it seemed, I began to feel better on these medications and now I am back to doing every thing I did before . . . walking 3 miles, playing with my 4 year old daughter, spending hours enjoying my hobby photography. Hang in there everyone. To everyone who is still suffering I send you a :grouphug:

[Plush]

I'm so THRILLED FOR YOU!!! I too have been in remission for quite a few months. I really feel the adding Estrace cream to my urethral area really helped. Every so often, I will feel the familiar burning, etc. I dab a bit of cream directly onto the urethra and within a day, I feel better!

Enjoy each and every day!
Hugs,
Plush

[massagedoula]

Janie, you and Diane57 were my people that I looked up to, because I saw that you were getting better and better, and I wanted to follow. I am 6 months behind you on Elmiron and doing very well. I can only hope that in a year I too will be in remission. Best of luck to you and hopefully you will stay in permanent remission. Can I ask a question? You were on a pretty high Elmiron dosage. Do you still take 600mg a day or have you decreased it?

[SharonA]

Janie and everyone else who is following her foot steps toward the remission goal...I am so happy for all of you. :woohoo:

[Janie Miranda]

massagedoula,
Within the last month I've dropped myself down to 2 pills twice a day of the elmiron. My goal is to get down to a maintenance level of just the three a day that most people take. I really hope you continue to get better and better!

Plush, so happy that you are doing so well. I too feel the HRT has been a key component for my improvement.

Diane57 - sorry I didn't see your last post sooner. I sure hope youare feeling much better and getting better every day.

Sharon, thanks for your good wishes! I do appreciate it! :-)

[Briza]

Hi Janie
I'm happy to hear that you continue to improve! Thanks for the update...it will surely give many hope that they will, too.

[swarr]

I have also been following Janie and Massagedoula. I appreciate you all posting and letting us know your results with medication and time frame. I began elmiron about when Massagedoula did (9/11) I feel much better but I have times that my bladder reminds me I have IC ( but not like pre-elmiron,diet etc.). I'm hoping for remission also. I wish you continued good health.

[icsonja]

My congrats to you both!! It is wonderful to hear positive stories, even when I may not be doing well. I am so happy for you and hope someday to post my owm remission story here!!
Sonja

[ithurts]

What foods have you cut out that you feel have made the most difference in symptoms?