dosage, can it be 600 mg a day, who what why?

[Katrina]

I am thinking of trying new or more treatments to discuss with my doctor..Because ofcourse I want to be all better not just a little better.

I had success with 300 mg to a point. I do not believe I have suffered any side affects.

What does it take to qualify for 600 mg and what does it help? Can I get to the point of not having this sensation of having to go all the time?? Who qualifies for this dosage? Has anyone that has had lower dosage and than gone higher noticed new side affects?

Thank you for all of your help.

[vm]

There is differing opinion on this. There are people at this site who are on 600mg a day. The one research study that looked at different dosages of Elmiron concluded that increased amount didn't seem to make a difference. They felt length of time on the drug is what mattered - the longer the better. BUT, some doctors still feel more may be helpful. My doc wouldn't "up it" b/c he worries about liver toxicity.

[ICNJess]

Hi Katrina--

I don't know much about the 600mg. dosage, I'm on the 400mg. dose. Betsie around the boards here is on that doseage, maybe she'll chime in if she gets a chance. But like Kim said, with the possibility of liver damage, I don't think a lot of uros like to give that dosage out. Hmmm good question. Hope you get your answer.

Hugs and love,
Jess

[MissMary]

Hi Katrina. I have been on elmiron for about 3 yesrs now. I did 600 mg a day for about 6 months and then I went back to 400. I haven't had any side effects from the elmiron except for the daily headaches. I did go off it completely for about 3 months when I thought I might be in remission but the ic came back hard and now I'm afraid to stop taking it. Good Luck ! blink

[Katrina]

Thanks for your help guys. Liver dammage......will probably have difficulty convincing a doctor to give me that dossage than.....so very very drugged up already.

I greatly appreciate the info!!!!

[dawn217]

I take 800mg/day for the first 6 weeks (that's how long it's been), going down to 600mg/day now and they will test my liver soon.

Honestly, I've been on Elmiron 2x now and 800 doesn't feel much "quicker" or better than the 300 dose.

[vm]

Wanted to add that there are people on the higher dose and they have the liver panels done periodically and they are fine. My doc just wasn't comfortable.

[Katrina]

thank you very much everyone for your help. I truly appreciate it very much. I can tell I need to keep researching this and bring a lot of info with me if I want to say why not this to my doc.

Thanks so much.

[Katrina]

Does anyone know how long it should take the upped dose to help?


I went from 300 to 600 and so far can't be certain that it helped it anyway....I do know I slept through a few days because of it. If anyone knows how long it should take please let me know.

[ICLori]

Hi, Katrina, my uro upped me to two tablets 3 X a day for a month, when that didn't seem to help, he just recently upped me to 3 tablets 3 X a day (900 mg total per day) in the hopes that it will help. He is leaving me on that level until I experience a remission, then we can try backing down. But he has no problem with me staying on 900mg per day for several months or even up to a year if that's what it takes.

The only side effects I have noticed is a temporary diarhhea/gas situation each time I up my dose, for about a week until my body gets used to it. The same thing as when I first started the med. But, I react pretty mildly to Elmiron I think as opposed to some people who react very strongly to it with bad side effects.

I can't answer as to when it starts to help more because I'm still in a flare (even with hydrodistention, grrr!) and haven't been helped yet. I've been on a higher dosage (600mg per day) for almost a month, and just last week started the 900mg dosage.

Blessings, Lori

[Sarojini]

My uro has said that it is possible to prescribe 600-1000mg a day, and that if I wanted to try that, he'd certainly do it... I decided to research this option before agreeing to it.

What I came up with is this: there IS research out there citing the safety of such high doses, and some of it shows an increased benefit, while the rest shows no difference in out come whatsoever. HOWEVER, the caveat for me was that a lot of the research done on the higher dosages has been sponsored by the company that makes Elmiron.

Now, I'm not saying that it makes it BAD research, I'm just saying it may be more BIASED than an independent research study... a company, after all, has a vested interest in whether or not you take more of their product, if you get my drift. I think this is an important thing to consider.

There is the risk of liver toxicity. In addition, my opinion is that in a lot of us IC patients, the risk of liver toxicity may be even greater than the study groups -- as many of us are taking pain meds containing acetominophen and/or drugs like Diflucan for yeast on a regular basis, and both of these types of meds ALSO up the risk of liver toxicity.

I decided to just stick it out with 300 mg per day of Elmiron... I'm essentially waiting for more independent research to come out on safety and efficacy of higher doses.

BUT -- this is just my opinion.... I'm not giving anyone advice one way or the other, I'm simply explaining how I made my own personal decision not to go higher on the Elmiron....

[Katrina]

Thanks for the replies. I have been on the 600 for about 8 weeks now.....I have few side affects from elmiron...infact when I started the 300 I don't think I had any. Toxitity...well I am tested often....and if this doesn't help I will stop the higher dose....but right now since elmiron helped me so much ....but than I later got worse....I am really looking for more help. Thanks so much

[ICLori]

You know Katrina, that pretty much happened to me, too, and I think I read of one other case too where it worked at first then stopped working. And I read one blurb somewhere from one uro who said Elmiron becomes less effective in some individuals with time.

On the other hand, one of the topmost IC experts, Dr. Parsons, says it becomes MORE effective with time so I don't know quite what to think. I think sometimes that we are all so individual that I will never be able to think this or that is impossible with IC. That even if it works for 999 patients there will still be that one patient it doesn't work for.

I'm a little disappointed because my uro called me, my liver enzymes are up and I have too much calcium in my blood. So that means cutting way back on Prelief and TUMS for me, and also maybe stopping Elmiron because it's the only medicine I'm taking right now that I can think of that sometimes has an adverse impact on the liver. I am taking Percocet, but they say you can take up to 6 per day with no ill effect and generally I have been taking anywhere from 2-4 a day depending on how I'm feeling.

Anyway, I went to give more blood for labs today to double-check things but it looks like I might be having to give up Elmiron too. Seems like my choices for treating my IC are getting narrower and narrower all the time :(

Blessings, Lori

[Katrina]

So so sorry Lori. Really wish things were going better for you. So there are others that got worse with time while on Elmiron....scarry. Why is too much calcium in the blood bad?

Hope things improve.

[ICLori]

Hi, sweetie, thank you. It helps to just hear someone else say "I'm sorry for you" when you get disappointments like this, you know? I feel like I've just been beating my head against the wall trying to find something that works for me, for IC. It's like my body is just being so difficult.

Hypercalcemia is bad because (besides being a potential marker of cancer that has metastisized to the bones, LOL) oh another list showed fatigue as a symptom and I've been sooo tired and lacking energy lately...maybe partly due to my hypercalcemia:

What causes Hypercalcemia?

The most common causes of hypercalcemia are: poor kidney function, hyperparathyroidism, cancer, excessive intake of vitamin D, and therapy for peptic ulcers.

Hyperparathyroidism is the excessive secretion of parathyroid hormone by one or more of the parathyroid glands.

Cancer causes hypercalcemia by increasing calcium levels in the blood and destroying bony tissue.

What can happen when hypercalcemia occurs?

Dehydration, loss of body water
Loss of appetite
Weakness
Weight loss
Nausea and vomiting
Constipation
Frequent urination
Kidney stones
Mental status changes, confusion
Coma
Irregular heartbeat

[photomom]

When I started elmiron in October I was on 600mg a day then I went to 300mg, and now I am at 200mg.... I am having my first liver panel done next week. So far the only side effect I had was hairloss in the first 3 weeks, after that it went away. Good luck!

[rosealee]

:) Dear Katrina when I started taking elmiron I was on 600mg and over time my hair started falling out. I then went back to 300mg and it has been working great for me. My doctor told me that once I started taking it I would always have to take it. Im really lucky my husband is on a good insurance plan to pay for it. When I stopped taking it after my hair fell out, what a bad mistake!! When I went for my next treatment I was all inflamed. When I told him my hair started falling out he jokingly said you have more hair than me. It made me laugh a little at myself for quitting and I got back on Elmiron. It took a couple months to get back to where I was before I quit. I know that they were doing a study at higher levels (like 800mg ) but my urologist told me to go down because he felt it did cause hair loss. I really hope things work out for you. :)

[Sarojini]

Well, my new urologist is of the opinion that 600 mg Elmiron per day is fine, and she prescribes it that way (300 mg, once in the a.m. and once at night). She strongly encouraged me to try it that way, and I (a) think she seems very well informed and (b) will try just about anything right now... so despite my reservations about it that I posted earlier in this thread, I have started taking this higher dose. So far I have not noticed any real side effects except for if I bump into the table or something, it causes a slightly bigger bruise now compared to before.

I've been on the higher dose for a week and a half now; I'll let everyone know what the result is.

:)

[July]

What is a liver panel? How do you know when you need one? How frequently? Always a little troubled about taking any kind of prescription med. for an extended time.

[Daniel]

I am a male, 185 lbs, and I only take 300 mg. I talked to my doctor about it, and he told me that he would not usually perscribe any more than that.

[vm]

In very layperson's terms (b/c I am sure not a doctor LOL) a liver panel is a bloodtest they run to check your liver enzymes. Some docs with patients on Elmiron want it done every 6 months, some once a year. I don't think my doc would have even had me do it if I hadn't brought it up to him. Now I have either my GP or uro prescribe the bloodwork. Which reminds me, I am probably due for that again.......

[Katrina]

Thank you everyone for your replies....Jen I guess you and I will be letting everyong know how it goes! :) I too have noticed bruises bigger and sticking around longer....no big deal, and if your doc recommends this dose I have higher faith that it will help....right now since my body seems to be thicking worse is the direction to go for all my diseases it is definatly time to fight back with full forse.

hugs to all