PDA

View Full Version : new member introduction/question


iyetlth
07-10-2006, 07:48 PM
Hello,

I'm a new member and diagnosed with IC March 06. My pain seems to be under control with strict diet, and meds. I noticed a difference within a few weeks of altering my diet to a IC safe diet. I know the Elmiron may or may not be working yet, but take it 3 x daily. Am also on Histex, Elevil, Zelnorm, and Ibuprofen. My question is that my hair is falling out ALOT. Not in clumps, but all over. Is this from the Elmiron or from lack of nutrition? Has anyone found a multivitamin they can tolerate? My Dr. said to look for a mulitvitamin for diabetic children with no added colors or flavors. Any ideas on where to find it?

I was diagnosed after several 'rule out' test. But finally did the Potassium Sensitivity Test...OUCH... but at least I finally knew what was causing my pain. The nurse instilled the rescue solution immediately, so the pain didn't last for too long. I cried in my husbands arms as we accepted what we had already figured out by doing our own research. Thankfully my husband is very supportive and helps me keep my diet strict. It's actually much healthier for my whole family to be eating fresh, organic foods.

I have the books "A Taste of the Good Life" and "Confident Choices, customizing the IC diet". They are both very helpful. I also have found that by taking Prelief, I can splurge and have some white wine or beer without a problem.

I'm glad to have found the IC network. My husband actually found it for me before i was even diagnosed as he was suspicious that I had IC. I've just been to shy to log into the network and chat.

dg2901
07-10-2006, 08:46 PM
Hello..:hi:

My guess would be that its the Elmiron causing the hair loss. I too am experiencing a bit of thinning since being put on Elmiron in May.

Re: the multivitamin--I would guess that any pharmacy would carry it. Since youre obviously already dealing with a particular pharmacist give him/her a call and ask if they have it, and if not, could they get it for you.

Take care, and hope to see you around the boards.
Diana :)

ICNDonna
07-11-2006, 03:45 AM
A very small percentage of people do lose some hair on elmiron; it's listed as a possible side effect. I always suggest to anyone who is going to start on it that they clean a hairbrush every day and carefully note the hair loss before starting the medication so they will have something to compare with the hair loss.

Donna

Sarojini
07-11-2006, 03:57 AM
Just wanted to give ya a little welcome :welcome:

And, wanted to add that if you feel your IC act up, you may want to switch pain relievers -- ibuprofen causes flares in a lot of ICers because it and its metabolites can cause the urine to become acidic. If you notice it's not working, you may want to try say, Tylenol... or ask your physician if there is something else for you.

iyetlth
07-11-2006, 05:16 AM
Hello,

thank you all for replying. It's nice to talk to others who know what i'm experiencing.

hoping4acure
07-11-2006, 05:27 AM
I just want to add my WELCOME. You have already gotten some great advise. I do agree about the ibuprofen. I found that out first hand. My hair did fall out, but not that much. You are very lucky to have such a supporting husband (as do I) it makes all the difference in the world!

Good luck and keep us updated.

:)

creatingkarma
07-11-2006, 05:29 AM
:hi: I just wanted to say welcome also! Glad that you came out of hiding & decided to chat with us!

graceimnot2096
07-11-2006, 09:03 AM
Just wanted to say hi, and glad you are here.
I also have trouble with ibuprophen, it causes bad flares for me.

Justalamp
07-11-2006, 10:06 AM
Welcome to the boards!

My Pharmacist gave me strict instructions not to take ibuprofen with the Elmiron. It makes my stomach burn worse than my bladder.

patricia1
07-11-2006, 10:15 AM
Hi wanted to add my welcome also.

Like the other said Elmiron can cause hair loss in some people. I was not able to take it because of this side effect for me. Also some find that after a while of being on it the hair loss subsides and if you do go off it the hair loss reverse itself right away. Just keep a look out and maybe do what Donna suggested about the hair brush, this way you can see what you are losing.

Also like the other's have suggested taking Ibuprofen can sometimes upset the IC bladder. It always seems to bother mine. And if you have ulcer's or a stomache prone to ulcer or that taking Elmiron and Ibuprofen can be a very bad mixture. Both can tend to upset the stomache.

theclownster
07-11-2006, 06:21 PM
Hi there! I just wanted to add my warm welcome to the ICN boards. It's a great place to find support from others who have IC. I'm glad to hear that you have your symptoms under control.

Wishing you all the best,
Jennifer

iyetlth
07-11-2006, 08:22 PM
Thank you for all of your advise. I've been under the medical of my GYNO since my diagnosis. She was very compassionate and she refused to stop until we found out what was causing my pain and discomfort. But, now I think I should go see a Urologist that has more experience with IC. You all seem to be on much different medications that me. I know we are all different. But the hair loss is driving me crazy. Not to mention the weight gain. (I"m guessing from the elavil). I did find a multivitamin for children with no artificial flavors or colors today at GNC. I'm gonna start on them tomorrow since I know i'm not getting enough nutrition eating rice, chicken, pears, and cottage cheese. I'm eating my veggies too though, but not enough I'm sure. I'll see you all around. Thanks again. Melissa