Oral vs Instillation form

[born2swim]

Does the bladder instillation cause hair loss too, or is it just the oral Elmiron causing alopecia?

I have noticed some hair loss last week and today it was really noticeable (even my hair stylist said, "dang girl, you have lost some hair").

So... I don't want to have bald patches at 24 y/o.

I will see the PA tomorrow for my second instillation and ask her about it. I'm not happy about seeing the hair loss. It's been 3 weeks tomorrow since I started the oral Elmiron.

Anyone lose some at first then stop losing it... or does it just keep on losing (and stopping the meds sooner rather than later is best)?

Thanks!

[amartaingirl]

re

I was on Elmiron for 2 months before I saw hair loss.
At the first strand..i dropped from 3xday to 1xday
still more fell

i quit elmiron completely 42 days ago today. (thats close to 6 weeks)
and its still falling out.
i cried all night last night and didn't sleep a wink.

my advise
ask about hair loss with instills...if its the same side effect, i would quit both oral & instills.

check ALL your other meds..for possible hair loss.
all i am on is elavil (works well, by the way)

the uro says it wont cause hair loss
the dermatogolist says it wont cause hairloss
the pharmtech at walgreens..say it wont cause hair loss
yet the www...says maybe

so i dont know..if the elavil is keeping my hair loss going or not.
but..as soon as my hair loss stops
i will let you know...exactly how many days it took

i am not bald. noone at work even notices
i can still hide it.

[littlemyrn]

I do the instills with Elimiron. I do not notice any unnormal hair loss. I mean I lose some when washing hair, normal. Good Luck.

[born2swim]

Hey amartaingirl! I am going to ask the PA tomorrow about the Elmiron oral vs instill. I was curious if any of you were told anything. Unfortunately, I cannot take Elavil (it caused gastroparesis and I couldn't even keep water down... on a baby dose). The PA said that it is not likely to give me the problem, but I talked with the best GI doctor in town and he said stop it immediately. They give it to people with IBS to slow down their GI tract, so he can see why it stopped all motility. I'm doing better today after having major issues yesterday.

With my hair loss... it's right at the parting line. I saw some last week and asked my best friend if she could tell. She couldn't see anything. I did. I got my hair cut today and the hair stylist could tell. Boy was it noticeable wet. I could even feel, texture wise, the difference. So, I'm not going to go through my 20's bald. I'll see about alternative meds (like aloe or something).

Thanks for your input. I'm sorry to hear you are STILL losing hair... 6 weeks out! That's terrible! I hope it stops or they do say the Elavil is doing it to you. So far, I'm getting results from the Atarax and Ultram, so I'll stick with that! I'm also trying to ID diet triggers right now. I OD'd on chocolate yesterday and had issues (but small amounts are ok). I wanted to see if I had chocolate cake if it would give me trouble, but some peanut m&m's are fine for example.

Boy this IC sucks!

[born2swim]

Thanks littlemyrn. I know that alopecia is not very common... but it seems like I hear about it a lot online (maybe because the ones having issues stick around here). I hope it stops or that the instils are good enough.

[amartaingirl]

ive never inquired about the instills myself...but..from all my private messaging to people about this hair loss...i think instills does cause it too


my hair loss is the same as yours..part line
i call it a reverse mohawk
(but it really hasnt gotten that far yet...lol)
the part line..till the back of my head..kinds of thins out..all around there..

i am 32..so i know i am freaking out..you gonna too..but everyone tells me it will stop...and its NOT the elavil...and dont freak out..but i cant help it.

i had blood work to check for throid issues..and all is well there..

i am totally ok with milk chocolate
but peanuts are a no no for me...and i am too afraid to try them in m&m's
lol


i was taking 4 medications...all with a side effect of hair loss
atenonol for high blood pressure...hair loss 1%
elmiron ..hair loss 4%
elavil...hair loss RARE
BCP..unknown percentage

i quit atenonl, elmiron..and i have been cutting the elavil in halfs
i am still on the BCP...as i can barely take care of myself over here...yet alone a baby!
mothers with IC,,have got to be super moms.

anyway, i hope all this med-adjustment stops it
well see on thursday...i only wash once a week..,.because i have a nervous breakdown when i do.


feel free to private message me whenever

and a little FYI...most health insurance companies..reimburse for the wig
we are not going to need it girl!!

[born2swim]

Reversible mohawk! Unfortunately, that is the case! I noice right in the front and right in the back (how men would bald) is worse. Yikes. I just got Nioxin to help in the mean time. I know that Zinc and Biotin can help hair and since I get plenty of protein I think my hair is healthy. I usually take Centrum chewable... but I'm laying off that to see if I notice an improvement with my bladder. I won't do that for long. I'm a vegetarian and this restrictive diet is really jeopardizing my nutrient stores!

I'll talk with the PA tomorrow. I don't think I'll forget. I am going to get another hair cut (it's not quite the right cut, so they will touch it up for free if I'm not happy). I am no happy about this! I have pin straight hair, that is thin (each strand is thin)... and now my volume is thinning (not that I had volume in the first place).

The hair stylist told me not to freak out because stress makes hair loss worse... but how can I not freak out! Yikes!

I have been on BCP for 7 years (and recently switched to Seasonique). I didn't notice the hair loss until 2 weeks into the oral Elmiron...

I don't know how healthy moms do it, let alone someone with IC or other severe diseases like Endometriosis. I'm 24 and can't imagine being a mom! I still have 5 years of professional school!

Don't even mention wigs! Yikes! I know someone that lost a ton of weight and hit menopause at the same time. She was healthy and eating well... she just went almost bald. She had to get a wig. She's now doing better and its growing in (now that she's at a healthy weight). Anyways... I don't want that wig scenario... but good to know insurance will cover it! LOL!

I do have another question. I posted it in the Alternative therapy section....

What about MSM, glucosamine, chondroitin, aloe vera pills or liquid, marshmellow root? Do any of those things help? I'm tempted to try aloe vera because it does have other health benefits and isn't harmful... but is it necessary and is it helpful. Thank you for any input!

[amartaingirl]

re

i am taking the aloe vera pills..in place of the emliron...currently
i was doing ok...using it with elavil too

i am no so good right this second..but i think the hair loss stress,,,caused me a small flare..yesterday/today

funny you mention seasonique...it was at the precise time i switched from monthly bpc..to seasonal...that my IC symptoms began
it was also a very stressful time in my life...and i thought i had a uti...and drank a ton on cranberry juice..so i think all 3 of those things caused mine.

[born2swim]

Well, they put me on the Seasonique because I was having issues peeing wise and my periods were getting more and more painful. They were wondering about Endometriosis but also IC flares with my periods (even though ortho-tri-cyclin worked for 7 years at keeping my horrendous periods at bay). Anyways... I was put on that when I was at my worst. I'm trying to get used to it still. I have 2 weeks left before I start the placebo row (well, it's actually estrogen and not a sugar pill). I started having issues right after taking Omnicef for tonsillitis. I started with some symptoms and "peaks" in symptoms at my periods, but that was in Nov. In January of this year, I was in hell. It was terrible.