elmiron and hair loss

[Donna L]

I have a question for those who have gone thru losing patches of hair. Could you share when, in the treatment time, the loss started? I've been on it since the middle of Jan. and went through a bit of stomach and bowel problems (I have IBS and GERD) but pushed through it. One more question, for those who have been treating this "condition" for a longer time period, does it get worse? I read so many different accounts of suffering, and while I have learned (painfully) diet and stress are HUGE and at least I feel like part of that is under my control...I wonder if it matters whether I treat this aggressively or not...it may get worse no matter what I do?...........Thanks for any input....Donna

[Katrina]

I didn't loose any hair on elmiron so can't help you there....but I will answer your other question. I feel that not working and having no children...but a wonderful husband that my life is pretty stress free all in all. I follow the diet about 85%. I have still gotten worse while being treated. slowly...very slowly...but it has happened.

I am now going to look into treating it more agressively myself...so it isn't like I have done everything and am still worse.

Best Wishes

[Alexa]

Hi there,

Sorry I can't help you with the hair loss question either...I didn't have any side effects from Elmiron. I'm not sure I understand your second question....are you asking if IC gets progressively worse with time? Although everyone is diffferent, most people do not become progressively worse because treatment generally begins with diagnosis. My urologist's approach was to treat my IC symptoms aggressively...and it worked for me. Good luck with the Elmiron!

:) Alexa

[Donna L]

Thanks for your answers. Yes my question was does this IC get progressivly worse? I'm doing pretty good. I take 2, 100 mg elmiron twice daily,6 urised, 4 cystoprotek and have added prelief when I get into foods that are spicy...........Not sure if this is aggressive or not, but I'm hitting it with all I can. Really do not want instillations!! I HATE the smell of garlic,so that would be my worst nighmare...........Thanks, you guys are the best!....Donna

[ICNDonna]

My IC was diagnosed 29 years ago in 1975. My IC has not progressed. In fact, I honestly think I am better than at the beginning because I have learned which treatment options work best for me and which foods and drinks to avoid.

Only a very tiny percentage of IC patients become progressively worse. The percentage is so small that IC is not considered to be a progressive disease.

It can take time to find exactly what works best for any individual case, but most of us do --- and most of us feel good most of the time.

Remember --- for every person posting here that they are in pain, there are hundreds out there who are not posting because they feel good and do not need the support of the boards.

Warm hugs,
Donna

[Donna L]

Thanks Donna. I REALLY needed to hear that! I've never acccepted what might be considered bad news without fighting with all I have. 29 years ago I had a daughter with mental and physical disabilities.Fought doctors and schools to get what she needed. We discovered she had a malagnant brain tumor at 7. Doctors said she'd live 3 years. She passed away 3 years ago at 26. In that time she had a great life,but we climbed many mountains. I guess what I'm saying is I don't accept Doctors telling me, there really isn't anything more to do, with much grace,and was feeling frustrated that this time I was fighting for me. It's a different kind of war, but it's still war........Thanks again....Donna L

[grace 2]

Donna, when you called this a war, I can sooo relate! My husband called from work this morning to see how I was doing. I told him I feel like I'm on a battle field. I'm dealing with hormone issues too. And to ICN Donna, I really appreciate the positive words:) I am trusting in God for my future, so it's gonna be good:angel: Grace

[Donna L]

Grace, I know that God doesn't walk us to it, without walking us throught it.and He has provided us with some pretty neat people to help us along the way,don't you agree? But it's still a battle. Never wanted to be Job...........Keep the faith..........Donna L

[grace 2]

Donna, Yes I agree, to all of what you said! Thanks so much for replying, it brought tears to my eyes ( in a good way!) I am praying for all of us in this IC battle, Grace

[Linda Harringto]

Dear Donna....My urologist just put me on Elmiron Friday. I just started taking it yesterday. (Three pills a day) I got a stomach ache a short time (about an hour) after taking the pills. Is this what you experienced? Also, he told me about hair loss...I was wondering if anyone had hair loss because of this and when it started. Did you get stomach aches or what other stomach disorders? Thanks for the info....Linda H

[Donna L]

Welcome Linda, Sorry we had to meet like this...but you'll find that everyone here tries to be very helpful. I had problems with my stomach just not feeling "right" for about 2 weeks. Figured my body needed to adjust to the new med.and it did. My problem is I also have IBS so anything new can throw that out of whack. I had some bowel problems but that also passed once my system got used to the new meds. I haven't had anyone tell me that they lost hair or when in the treatment time it happened. I know that's something I'd like assurance on too....I have had many respond they they never had problems while on elimiron...Hope this helps...........If you need anything, we are here for you......Donna L

[Kristi2]

Linda,

I have been on Elmiron along with other rx's since about September '03. I did not have any stomach problems with it. Actually the pain meds I was on at the time (no longer on any pain meds) made me so constipated, that I think the Elmiron helped give me a little looser stool at the beginning. But my system has since balanced out. I started at the 3 x a day dose, but found it difficult as far as timing. I know take 200mg in the AM, and 200MG in the PM.

As far as hair loss goes. I did notice it coming out a little more than usual. I was sure to check my brush, counter, and shower drain before I started the med so I could compare. That also has resolved itself. I still have all my hair.

Elmiron, along with a combo of other meds has really helped me alot. I am doing so much better than at diagnosis. Some days I still flare a little. I think it is more manageable now because I know what it is and how to deal with it. I wish you good luck!!!

Kristi

[Linda Harringto]

Thanks so much to all of you. I would love to be able to converse so much more with all of you because I just want to know all there is to know about IC from personal points of view. I do not have a computer at home so I try to ask as much as I can in a limited time from work. I love going on and reading your stories and feeling like I have kind of a family and that I'm not alone. I have been divorce for many years and only have my puppy at home to talk to so when I finally found out what was wrong with me it was so wonderful to find you....

[Linda Harringto]

Dear Donna....How long did your doctor say you would be on this before you saw a benefit if any? Mine said it would probably be 3-6 months before I saw any improvement. I forgot to ask how long after that I would probably be on it.

[tillysav]

:hi: Donna,

I started taking Elmiron in December 2003 - within 2 weeks my started falling out. :eek: It was scarry not knowing if it would stop falling out or get worse. My hair continued to fall out another month...then it stopped and started growing back in! :) I've been on Elmiron 4 months now and my hair is thick as ever and no longer falls out.

My doctor is an IC specialist and said the way to treat hair loss side effect is to "stop taking Elmiron for 2 weeks...then start it again".

Everyone has different reactions to meds. I would ask your doctor about it. Good Luck...Tilly

[SharonA]

Hello...

I was dxd in August 2001 and I am so much better than I was when I went running and screaming to a uro to find out what was causing so much pain. Over time, I found what treatment works for me (I do not take Elmiron) and I live a pretty normal life now. There are days when I actually forget I have IC. I hope the same for you... :)

[fireflicker285]

I think I am losing more hair since being on Elimiron. I sure find alot on my shirt and in the sink. Surprisingly though, there is still pleny on my head!
I figure, if it helps my bladder it is worth it....

It did upset my stomach in the beginning, but I think you get "over that" as your body adjusts.

I have heard it can take a year for some people to really improve. Others seem to respond in 3 to 6 months.

I am hopeful. I have only started back on it 3 months ago. Had to stop before to have my daughter.

I don't really think my IC has progressed. Have had it for 10 years now. I do have more muscle spasms than I used to, but I am just trying to get that calmed down now.......

Good Luck!:D

[Donna L]

Hi Linda, My Doctor said the same as yours.3 to 6 months. I've been on it for just about 3 months and have added prelief and cystroprotek to the mix. I also rely on urised for bladder pain. I'm doing pretty good.Seems like when I do have a flare,it's food related, and only lates about a day(even if it does seem like forever). Prelief, if I take enough, has allowed me to get into some of the IC No No foods, as long as I do it in moderation. Hope this helps....Donna L

[Donna L]

Fireflicker 285, Congradulations on your little girl!!! Donna L

[Angela boyer]

Donna
I was on elmorion for about a year when I started noticing my hair was falling out and I talked to my DR. about it and he lowered my dose from 100mg 3 times a day to twice a day and that worked for me and my hair grew back. maybe your dose is to strong? hope this helps

[Linda Harringto]

Originally posted by SharonA
Hello...

I was dxd in August 2001 and I am so much better than I was when I went running and screaming to a uro to find out what was causing so much pain. Over time, I found what treatment works for me (I do not take Elmiron) and I live a pretty normal life now. There are days when I actually forget I have IC. I hope the same for you... :)

Sharon...If you don't mind my asking, what medicine has worked for you? Thanks....Linda Harrington

[Linda Harringto]

Originally posted by SharonA
Hello...

I was dxd in August 2001 and I am so much better than I was when I went running and screaming to a uro to find out what was causing so much pain. Over time, I found what treatment works for me (I do not take Elmiron) and I live a pretty normal life now. There are days when I actually forget I have IC. I hope the same for you... :)

Sharon...If you don't mind my asking, what medicine has worked for you? Thanks....Linda Harrington

[Donna L]

Hi Tilly,Thanks for your response. Can I ask about the volume of hair loss? Are we talking, have the name of a good wig store, or hair thinning?? There's a BIG difference! :confused: ..Donna L

[crossfox]

I am losing hair too. I started on Elmiron in October. About mid December I started to get globs of hair in my hair brush, and comb. I changed shampoo's. Still more hair loss. I cut my hair as it was down to my waist. I cut about 6 inches off. In January I started noticing that there were spots, lots of spots on my head that were sore, and bumpy. Still more hair loss. I cut my hair again shorter in early March. The amount of hair loss has slowed down, but it is still falling out. My doctor says it will all grow back if I stop the Elmiron, but the help of the Elmiron has outweighed the hair loss until now. I am having a major flare, but without any "reason" such as I have no bacteria in my urine. I am in pain all the time, back to where I was when I was diagnosed. Now I have chin length hair, and people don't recognize me! :headbang: If you find something that helps please let me know. :confused: anyway your hair will probably grow back. Cutting my hair getting the weight off of it helped some. I do see tiny strands of hair sticking up, so some of it has already started to grow back, but it will be years before I am happy with my hair again. It is an identity thing I think. Shows my age...just an ole hippy chick I guess.

[Donna L]

Hi Crossfox. I'm so sorry that you are feeling so horrible. I think we all want to believe there is a "and she lived happily ever after " in our lives, and really do feel each others pain, when that doesn't seem to be the case.Has you Dr given you meds for the pain, or are they just not working? About hair loss, did you read Tillysav's post. She shared that when she started to lose hair her Dr said to go off elmiron for two weeks and then restart it. I keep my hair pretty short and am planning on a cross between a pixie and short shag. Hubby has a motorcycle, and I don't want to have to rip thru my "tresses" to pull the snarles out. I think we all stress about the "hair thing"........Vanity,Vanity What can ya do??? Here's hoping you are over your flare very soon
Donna L

[tillysav]

Hi Donna:hi:

hmmmmm. I have thick dark hair and I was beginning to be able to see my scelp in certain areas especially the hair line. It fell out in handfuls ... But, it all grew back within a month to 6 weeks. Happy! :thumbsup: Good luck!

You can always stop the Elmiron for 2 weeks and then start it again. My URO said this is how they treat hair loss. Sounds strange, but he said it works.