hair going going gone?

[JessicainArkans]

I had a friend who has a wonderful IC doctor in Tulsa tell her that he went to a convention and (I hope I am quoting this right) that once on Elmiron and you notice the hair loss, some paitients will go off the Elmiron for 1 week then resume the med as directed, for some reason the hair quit falling out, I do not know if the doctors had an answer to this but it was working in the patients that had this problem when resuming their regular Med regimine the hair loss ceased!
Good luck to those who are searching!
I quite taking Elmiron at 10 months, I think it worked to my benifit, I had a horrible summer of 2003 but am feeling much better now since I had a series of Nerve blocks.
Good luck to all of you !
Much love and concern
Jessica
JessicainArkansas

[sleepyangel30]

i'm glad you are feeling better, My IC is getting better since I stop worrying about it. I can't take Elmiron it makes my bladder crazy! lol. :angel:

[tillysav]

:hi: Jessica,

Bet that is me you are quoting regarding doctor and hair loss from Elmiron?

Interesting that you brought this subject up today because I was just wondering WHAT TO DO? My hair started falling out again! The first time it fell out my doc said stop Elmiron completely for 2 weeks then resume dosage as normal and it will stop falling out. I was hurting so bad at the time, I was afraid to stop the Elmiron. I just waited it out and eventually (about 2 months) my hair grew back-thick. (I never went completely bald-just very thin). Ok, now it has started falling out again!!! I called the nurse who said that Elmiron can cause hair loss symtems like this "off and on." SO, now I don't know what to do, whether to stop and restart Elmiron or just wait it out like last time. :shake: Soooo afraid the bad PAIN will come back if I stop Elmiron for 2 weeks (but maybe it would not.)

I'm going to ask this question at the Patient Education Day in Houston on May 1st.

Stop Elmiron (2 weeks) then resume normal dosage. My doctor said this works! He promised if you do this it will it will stop falling out immediately.

Soooo confused. :confused: I want my hair back thick again but soooo afraid of PAIN. Common sense tells me "quit fretting about your hair! Follow your doctors advice! :thumbsup: After all ... he is the IC Specialist.

P.S. I should be ashamed soounding so superficial ... vanity is not a good thing ... SOOOOO much more important things in Life. :kiss:

[JessicainArkans]

Tilly,

Yes it was you that I qouted but I did incorrectly it was two weeks not one, so sorry out there (Tilly thanks for clearing this one up!)
We all have physical qulities that we would like to remain untouched as we go through these crisis, it is not vain to worry about things like this, look how many people have and will have plastic surgery in 2004, it probably avarages in the millions!!
Thanks for the good input Tilly!
XOXOXO
Jessica
:kiss:

[tillysav]

:hi: Jessica,

Wish you were going to Houston Patient Education Day on May 1st. I would love to see you again. We'd have fun, I just know it :dance: :biglaugh:

You're so articulate...good writer. :thumbsup:

[JessicainArkans]

Tilly,
I sure wish I were going with you, when you told me you would be going I was sad that I would not be there, I would so love to go!!
Maybe I could get a weekend pass from David (ha ha) and go!
It would be fun to see you again too, I miss you!!
Just think of the people who are just like all of us there in one place, WOW what a powerful and insightful experience that would be!
Tilly, e- mail me about some more info would you, I would love to go! Is your hubby going with you?
I hope that many will benifit from this event, it is great that they have this to offer.
Please let me know
Much love,
Jessica

[dawnfawn]

:toosh: I have been taking elmiron for 4 years. I have been taking it twice a day 1 pill for over a year. I notice no difference at all. I have also stopped for over a week twice during this time as once I experienced bruising while on elmiron and aspirin. I notice no difference at all. I do not know how long it takes to wear off your bladder. However, if you never get another infection it seems to me that it may be permanent replacement of the layer. Has anyone ever had another hydrodistention after being on elmiron for many years to check this out? I may cut myself down to one daily soon. Keep in mind that this is an orphan drug and little is really known about it.

[blue]

I couldn't take the Elmiron. It felt like I had the flu. I also, had purple spots on my neck and chest.