Elmiron

[Grace]

I have been taking Elmiron for going on 3 years now. I have no problems. At first I lost some hair but that stopped after a while. I would be very scard to go off of it. I do not want to go back to the way things were.

Grace angel

[liz2]

My hair thinned some, but it is something that I can live with. Elmiron helps me a lot, so I will deal with hair that is a little thinner.

[Cali girl]

My hair is a little bit thinner too. But that's ok. I would much rather feel better than worry about my hair.

Cali :)

[dawn217]

Don't go off Elmiron unless you want a return in symptoms. Mine took 5+ years to come back, but it did!

[tillysav]

For those who experience major hair loss - What's the average amount of time for it to begin growing back? Thank for your replies. Tilly

[firewriter]

These side effects are nasty. I don't know which bothered me the most, the migraine or the nausea. And it just seemed to kick in at the same time, so I couldn't get anything done around the house :mad: . How long before these side effects wear off? banghead

[dyno]

I also have had no side effects from Elmiron. It won't help everyone,but the ones it does are very thankful.

Jolene

[vm]

Have you tried taking it out of the capsule, firestarter?

[Alexa]

Hi there,

I didn't have ANY side effects from Elmiron...and it helped me tremendously. I feel like it gave me my life back.

I was on Elmiron for 3 years, and eventually weaned myself off of it, and it's been 2 years now and I'm still doing great, maintaining my symptoms with a very strict diet.

Good luck :)

Alexa

[tillysav]

hi Alexa,

That's Great news! Happy for You! And, so glad to hear encouraging report on Elmiron.

I have been on Elmiron for about 2 and 1/2 months and I think it is helping me. I have not had severe IC burning bladder pain since mid December. Although, I do still have pressure, urgency, bloating, heaviness and back ache (feels like bladder is pulling me down). I'm not sure what causes that feeling. Does anyone know about the pressure, heaviness feeling? Does Elmiron help with that too, in time :rolleyes:

Also, what about IBS (constipation)? I have read that Elmiron contributes to gastro problems. Soooo CONFUSED. Everyone here is so helpful. I hope I am not wearing you out with too many qusetions. :) Thanks Tilly

[Aspencad]

Don't know if anyone has tried but for hair loss you may try Procerin or Avacor.

[firewriter]

lol@ firestarter, I haven't been called that since I was a kid. No, actually I haven't tried to take it out of the capsule, does that help any? These headaches are beating me up.

[usmcgowan]

Hi everyone

I hope you all are having a wonderful day. I am having a terrible day at work. I sometimes think that after the interstim disaster ,the unsuccessful medicines and all those doctors I do not feel like I can anymore. I have however not tried Elmiron and I am so frightened too. Can anyone advise me if I should, since all other medicines and therapies constantly fail. I also feel like I am down to eating nothing. I am 5'10 and only way 130 pounds now due to such a restictive diet. Does what one eat really matter. I really have become afraid of the flare ups, food ,medicine and I am even now scared of intamacy. I some days feel so strong and othe days like I want to jump off a bridge. Anyway I apprecaite all of you, and am sorry we all have to come together under these circumstances, but finally I do not feel so alone. I will pray for all of you. Oh by the way it was nice to see there is another Alexa among us. Thank you all for listening to me feel sorry for myself, I feel better already and maybe I can give some advise to anyone who needs more info about interstim and how it affects us women.

grouphug Alexa

[dyno]

Alexa,
First of all if you ever get feeling really depressed, make sure to contact your Dr. or go to the emergency room for help.

About the Elmiron, I was terrified of this medication. I waited 7 months before trying it. It is helping me and I have had no side effects at all. Diet does make a big difference for me. It might be helpful it you don't do it already to do a food diary, maybe there is more you tolerate than what you think you can. Also using Prelief with my food that I could have trouble with helps me.

I wish you well and hope you find something that works.

Jolene grouphug

[usmcgowan]

Jolene

Thank you so much for your reply and support. I apprecaite it and I think I will be brave and try Elmiron. I suppose I have tried everything else, what do I really have to loose. I do already have the perscription so I will take another brave step and go tomorrow to the pharmacy. I will post my findings and share it with everyone. God bless!

Alexa
kissing

[dyno]

Alexa,
A couple things to mention, some people experience a little nausea with Elmiron, one of the recommendations has been then to empty the contents of the capsule into a glass of water. The capsule shell is what was causing some of the problem. One more thing I did forget, I did experience some mild itching and I have heard others mention that also, my did go away after a few weeks.

There is a guest lecture at this link from our website.

http://www.ic-network.com/guestlectures/parsonstranscript.html

One of the things mentioned in this website mentions several other medications that are many times used with Elmiron. I do take one of these meds and the combination of these with watching my diet is what has helped me. We are all different but if you haven't read this lecture, you might like to.

I wish you well and hope you find something that helps. If you have any more questions, ask away, we will all try to help if we can.

Jolene grouphug