Elmiron and saw my Urogyne today

[cmclien]

Hi all,
Saw my urogyne today. This is my 3rd time seeing him since last spring and I have to say I feel lucky as he was just an HMO referral from my doctor but has worked out well. He is calm, soft spoken and open to different treatment options. He has had the most success with instillations of marcaine, heparin and kenalog. He said its a very soothing instillation and is super successful in treating his patients with it. He mentioned DMSO but said it is quite irritating to some people but can be successful. He likes to start with the soothing ones first.

I told him I'd like to try oral meds first and he was totally fine with that so I am starting elmiron 2x a day 100mg each. Is this what most of you are taking? He said generally if he was to treat 10 patients with it, 4 of them would have success. Some swear by it so its worth trying. Because I'm a mild case I am hoping I will be one of them and not have hair loss. He also said in 10 years he has probably only had 2 patients who had hair loss and had to discontinue use because of it. He thinks if I don't feel a change in 3 months it probably won't work. Is that true for most of you? or did it take longer?He thinks in addition to mild IC I also have oab so we're trying the newer drug toviaz. I've been using vesicare and it works for me but is so drying to my eyes I can't take it every day. He does not think they are of the same diagnosis but I know some doctors do. I personally think they go together but only time and research will correct me on that one.

[sailawaygrl]

I have said this many times, Elmiron took a full year to work for me. I would think that with a mild case of IC that it will work faster. It does stand to reason that it wouldn't take as long to repair the GAG layer, hopefully it will help soon. What it helps me with the most is pain, not sure how it does for urgency and frequency. Good luck, hope you see results fast.

[cmclien]

Wow, a whole year huh? I'll definitely give it 3-6 months especially if it doesn't make me feel sick or anything. Do you know if they recommend taking it without food, like right when you wake up and before bed? I am taking this in the hopes of getting rid of the tenderness I feel in my bladder, its like its sore but not painful if that makes any sense. Its like a rawness I guess is the best way to describe it. My frequency isn't too bad especially if I take the OAB meds but maybe if they are connected (the tenderness and the frequency, which I think they are) it will help that too!

[sailawaygrl]

You are not supposed to eat for one hour after taking it and for two hours before you take your Elmiron. I wake up early and take my meds and then watch the news for an hour. At night I take them all at 8, that way I get sleepy from the one's that are supposed to help me sleep but can wake up ok.

[Goldfinch]

Be patient and be positive with Elmiron. It's interesting to hear that your doctor thinks it has a 40% success rate. Last time I checked most sources claimed it was 50 to 60% effective.

So far I am having great results with Elmiron, and no side effects. I started feeling better inside of three months, and have been feeling pretty much like my old self for the last year, with no flares. I've been on it more than 2 years. I started on 3 pills a day, and continue with that, although I sometimes forget about the mid-day dose and it doesn't seem to be a problem. If you find you are getting good results after a few months of stability, you might talk to your doctor about reducing the dosage down to 300 mg instead of 400. 300 may work equally well for you, you never know.

I was paranoid about side effects, and after a few months I thought I was bruising more than usual, and then I had some nosebleeds. It turned out that I had a burst blood vessel in my nose. Once it was cauterized I had no further problems, and I stopped bruising as well, so that may have been a coincidence too. Follow any direx about stopping meds for dental or other procedures, but truthfully, I've never had any issues with dental appnts, and I am guessing that Elmiron builds up the system slowly, and it probably would not have much effect on any bleeding issue in the short term. I have had absolutely no hair loss. I hope it works for all of you who are just starting it.

[cmclien]

Goldfinch- Thanks for the positive comments! So far the only effects I am noticing is stomach upset, while I slept last night I kept getting woken up by these pangs in my gut. I think if I increase the omeprazole that will go away. A tiny bit dizzy too but hopefully that will go away. My doc actually started me on 100mg twice a day. Do you think thats enough? I hope so. My IC is mild but I want it to go away as even with mild IC some days its not fun (not that it ever is ha ha) and I get tired of being aware of my bladder. Do you find you can eat more foods?
I am feeling hopeful. My doc just said from his experience if he has 10 patients who start it, 4 of them will have great improvement and the rest will need instillations which he has great success with.

[Goldfinch]

Sounds like you have a good doctor who is willing to listen to you and have you participate in your own treatment, and that's major, believe me.

The manufacturer's recommended starting dose for Elmiron is 300mg per day, taken on an empty stomach. You might just ask your doctor why he only prescribed 200mg. Perhaps he wants to see if you have any negative responses right away, which is prudent. There's no telling if 200mg is enough for you; everyone responds differently, and I have no idea if doctors adjust the dose according to a patient's weight. A person who weighs 200 lbs may need more of a given drug than one weighing 100 lbs. So I would say query your doctor about this--no harm ever came of asking.

The only reason to bump up to 300mg sooner rather than later is that Elmiron can take so long to start working, and you don't want to waste several months if a higher dose might be better for you. Of course you want to use the minimum that works for you, but you can always reduce the dose if 300mg works well for you and see if you can maintain on 200mg after you have stabilized. That's just my own reasoning, however, and I worked with my doctor carefully to make decisions about my treatment that felt right for me.

Yes, after two years I have slowly and carefully added more and more foods to my diet. I can cheat once in a while and have a slice of pizza with tomato sauce, but I try to stay away from tomatoes, and anything with serious amounts of citrus or vinegar, and I don't touch red wine or soda. I limit my coffee drinking to a few sips of my husband's cup once in a while. I can eat chocolate and most berries, stone fruits, and mayo. You couldn't get me to eat one cranberry if you held a gun to my head.

One thing that helped me mentally with my diet was to make a decision to stop looking for substitutes for products I was used to. Let's face it, there is no substitute for lemon juice or mustard or dill pickles. So I started looking for new foods with new tastes that didn't require traditional condiments. I still find that a green lettuce salad is pretty deficient without the vinegar component, but there are plenty of other kinds of veggies that can be eaten raw or as cooked salads that are terrific with nothing more than good olive oil and salt. Raw fennel, roasted beets, avocado, green beans, cauliflower--anything with distinctive flavor often needs less of a dressing. Who would eat lettuce plain? Save it for a turkey and butter sandwich. Take care! You are on the right track.

[vanilla]

Hi,

I only take 200 mg a day because my hair falls out at 300 mg. My doctor said studies had been done and 200 mg was found to be as effective as 300 mg. I am only repeating what my doctor told me, so please no angry responses. I hope this helps.

[cmclien]

Vanilla Thats good to hear. I emailed my doctor and just put the question out there innocently like the pharmacy did it wrong or something and asked if I should be taking 300/mg a day instead. I'll let you know his response when I get it. The middle dose would be tough because its hard to find that time during the day (an hr before and 2 hrs after) to take it.

[cmclien]

I heard back from him, he just said they have better compliance with twice a day, I suppose meaning people will actually take it twice a day and not 3, and maybe less side effects that way. He also said they've had good results with the twice a day. He said he would call me in more if I wanted to do it that way but I think I'll just keep it the way its prescribed at 2x/day.

[vanilla]

Oh, good. I'm glad to hear your doctor thinks 200 mg is okay, too. I insisted on the elmiron instills as well, and my doctor agreed because I was in so much pain. It's nice to have all of my hair again.

[Goldfinch]

Just to clarify: these are two different issues, whether you take your meds twice a day vs mgs per day. Many people have a hard time taking 300mg divided into 3 doses of 1 pill each time, so often their doctors recommend they try taking 1 pill in the morning, and the other 2 pills together for the evening dose. Often those who take 400 mg per day take 2 pills twice a day.

If 200mg per day works for you, that's fabulous. No one should be taking more than they need, of course.

[vanilla]

oops. I misread the initial post.