Up and down on Elmiron

[danii26]

Hi All

Just wondering if anyone has experienced this with Elmiron?

I have been on Elmiron for nearly 4 months now and just last week I was feeling about 85% better and now over the past 2 days my symptoms have worsened. Does this happen in the early stages of taking Elmiron. Hopefully the ups will become more and the downs will become less.

I'm just hoping and praying that it was the Elmiron that was working for me last week and not just something else. I hate this!! I'm so sick of being let down with this disease! :bonk:

[bjt]

Hi Danii
Yes, I've had flares while on Elmiron. Elmiron really works for me (I've been on it a year) but I've had a couple of flares... though they are generally more mild than they were before I took Elmiron. I can usually trace them to foods that I've been adding back but that I've been eating too much of (like lots of soy, or drinking too much black tea flavored with vanilla)
Hang in there! Are you still following the IC diet?

[tjm0852]

I can relate to what bjt is saying there are good days and bad. I have been taking Elmiron for close to three years. Most of my bad days or in the most recent case bad, last, night I can correlate to my diet. I had two glasses of iced tea, I usually only drink water. I had to get up to pee at least 4 times last night in a 7 hour period.

Stick to the IC diet. The Elmiron seems to be working for me as it does for you.

[ICNDonna]

The others are right. It could be something you ate or drank that is causing your symptoms over the past few days. My suggestion would be to stick closely to the diet until you feel better.

Hugs,
Donna

[vm]

That absolutely happened to me in the early times of Elmiron. Scared me every time b/c I worried it meant it stopped working. The longer I have been on it the more infrequent the flares are (can't remember my last one, in fact) and when I do flare it's very mild.

[ICB]

As previously mentioned, diet could be a factor. However, there are many other reasons that could possibly be the cause of your flare-up. Below are some of the possible causes:



Mast Cell Degranulation
Menstrual Cycle
Exercise
Sexual/Intimate Activity
Pelvic Floor Dysfunction
Tight Clothing
Standing or Sitting Forward for too long


There may be many other triggers that could have caused your flare. However, if you have already started feeling better - chances are that the Elmiron has already started to help your bladder and it's just finding other treatment options to control the remaining symptoms.

Only your healthcare provider can determine if the above suggestions are appropriate treatment options for you; these are just some suggestions that you can discuss with him/her.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB :flower:

[Tracey5399]

Hi,

Just wanted to say i have had great success since i started the Elmiron about 10 months ago & once i added the antihistamine it even got better, I have had relapses and such and still right now at about 50% but 9 months ago i was at 0% so hang in there, you have shown good results w/it, just takes time.

Good luck,
Tracey :)

[danii26]

Thanks everyone for responding! I feel much better now and realise that it is probably my diet that is causing the ups and downs. I haven't been very strict lately and have been having a few wines occasionally which I know I shouldn't. When I started to feel better a couple of weeks ago I straight away got excited and started eating and drinking things I shouldn't like chocolate, alcohol and spicy food. I hope that's all it was. I'm still going through a bad flare at the moment because i've just gotten back from my Easter break and have once again been bad. It's so hard sticking to the diet. I feel so left our not been able to eat the same foods as everyone else. But I just have to weight it all up and decide what's more important. Eating yumming things or having a happy bladder.

Thank again for all your support.

Danielle