Thread: Newbie here
12-07-2007, 11:31 AM #1
Just found out yesterday I have IC---tested positive. Boy was that uncomfortable!!! There is a lot to learn about this bladder condition....the diet,the medication,the self help measures.....It is a lot to take in!! I always thought my pain was because of my menstrual cycle(always had trouble with it)....that is up until about 3 months ago. When I started having so much pain that I was vomiting and unable to get out of bed for a week at a time. I have missed quite a bit of work lately...and made multiple trips to the doctor.Thank goodness I have a wonderful boss that is very understanding. My IC doctor has referred me to another doctor in the same clinic that specializes in endometriosis because they think I may have it along with the IC.
I can't believe how much the medication costs. Elmiron is soooo high!! I am a little bothered by the side effects that I read.....like the hair loss. How many of you have lost your hair???? And is it a lot or a little? Sounds scary...don't know what I'd do without my hair?!? I was also shocked to see how many people have IC. I had never even heard of it. But I am sure glad to see there are others that have IC that I can talk to .....even though I would not wish this illness on my worst enemy.
Anyways, just thought I would introduce myself and wish everyone a "PAIN FREE DAY!!!!"
12-07-2007, 12:22 PM #2
Welcome to the ICN. There are several postings on hair loss under the Elmiron section. I happen to be one that was effected and several people on here gave me some great advice. It's not common, but it does happen.
Hope that you find the treatment that works for you very quickly!
12-07-2007, 12:55 PM #3
Hello and to the ICN...
All the information can be a bit overwhelming at first, but it will become less so as time passes. Take your time and try not to overload at any one time.
Don't let people's posts scare you. Just because they are having problems does not necessarily mean that you will, also. IC presents itself differently for different people. Your symptoms may not be as difficult as another's or more so than someone else. In my opinion, that is the most frustrating part of this disease. We are not all alike with the same symptoms. If that were the case, it would be much easier.
Try to remember that we react differently to the same medications/treatments. What works for one may not work for you. What works for you may not work for others.
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
12-07-2007, 01:27 PM #4
Welcome!! You will find this site to be a wonderful source of information. Try to keep in mind that you are you and this disease will never change who you are as a person. If you can remember that you'll be o.k. It is true that you can loose your hair on Elmiron. I lost just a little and it was only over a short period of time. Elmiron saved my life. Give it a try if your doctor prescribes it, you won't know unless you try. I wish you the best of luck and if you have any questions at all please let me know. I'm 30 now but I was diagnosed at 22, I felll like an old pro
12-08-2007, 12:08 PM #5
Welcome! I have been on Elmiron for about 6 weeks now and I am not really noticing any excess hair loss. I lose hair all the time and have for as long as I can remember. I have a lot of hair so it is never noticeable. I did have some stomach upset in the beginning but that improved after about 2 weeks. My new doctor increased me from 300mg a day to 400 mg and made it twice a day instead of three times a day. It's worth a try. The worst that happens is that it doesn't work and maybe you lose a little hair. I don't think it happens to an extreme usually.[FONT="Comic Sans MS"Lisa[/FONT]
Matthew & Christopher-13 1/2 years old
Ryan-9 1/2 years old
Wife to John since May 4, 1996
DX with IC after PST 10/18/07
Lithotripsy for L Kidney stone-8/14/07
Cystoscopy & Biopsy-6/18/07 Mass in non-cancerous
CT Scan-6/5/07 F/U for bladder mass and kidney calc
Cystoscopy-5/30/07 Doctor found bladder mass
Pelvic and Renal U/S-5/15/07 Calcification of L kidney
Hypothyroidism DX 10/95
Possible SLE, currently diagnosed as Undifferentiated Connective Tissue Disease as of 4/10
Currently taking: Synthroid 88mcg, 1000iu Vitamin D3
12-09-2007, 02:48 AM #6
Hi, I have been on elmiron for about 3 months now, I have not noticed any hair loss at all and I didn't have any side effects and I am extremely sensitive to meds. It has really helped me along with my other meds. I get really bad pain every month with my period also, but thats when my IC acts up the most. This site is so helpful! I always read the side effects and was scared to try anything, but I am so glad I did start it because I have been fine with it, but everyone reacts differently to medications. Good luck to you! LisaLisa
Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca
Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).
Users Browsing this Thread
There are currently 1 users browsing this thread. (0 members and 1 guests)
By ms.underhill in forum Pain Management For Interstitial CystitisReplies: 8Last Post: 09-15-2008, 04:11 PM
By Kimcheck in forum Newly Diagnosed With Interstitial CystitisReplies: 6Last Post: 03-22-2007, 07:10 AM
By squirrelmonkey2 in forum Newly Diagnosed With Interstitial CystitisReplies: 2Last Post: 10-12-2006, 07:12 AM
By magmouth in forum Newly Diagnosed With Interstitial CystitisReplies: 16Last Post: 08-06-2006, 06:47 AM