Thread: Elmiron Instills and Hair Loss
12-08-2008, 04:14 AM #1
Elmiron Instills and Hair Loss
I have been getting elmiron instills for a few months not - series of 6 one a week for six weeks. They were helping a lot but the pain just hasn't seemed to get any better with this series - on top of it I have had 2 infections in 3 weeks so they have me scheduled for a dialation next week. Anyway I have notice my hair getting thinner but on saturday I took a shower and had so much hair in the tub when I got out I was concerned so I cleaned out my hair brush and when I brushed it I had a huge amount of hair. I have really thick hair to the middle of my back and have never experienced such a large amount of hair loss. I showed my b/f and even he was shocked. So now I don't know if it is worth continuing. I am at my wits end with trying to get releif. The only thing that seems to help s pain medicine and I just don't want to live drugged up all the time. I am hoping the dialation helps because I can't keep living with the pain and getting up 5 times a night to go to the bathroom. If I am going to lose my hair at least I should be pain free....June, 2011 - In remission for exactly one year to the day - what a difference life is without IC...but I am back
"Sick and tired of being sick and tired..."
Diagnosed with IC May 2008. Had UTI's (or what I thought were uti's) since I was 10, and terrible menstrual pain, so glad I was finally diagnosed with something.
Started with Urethral Dilations when I was 21. Since I didn't have a bladder infection when I felt like I did that was their answer - torcher! Had several over the next 15 years...I am now supposed to have one every 6 months because of scar tissue
Tofranil (imipramine) 25 mg at night
Vicodin periodically when my dr. letís me have it
Klonopin for restless legs
Nuvaring - constant birth control
Heparin Rescue instills - series of 6 1 x per week at drs. office. When needed. Series of 12 2 x per week if really bad.
Transcutaneous posterior tibial nerve stimulation - WORKED however insurance doesn't cover and it ended up costing me a lot of $
Elavil - helped with pain and frequency but made me so tired I couldn't function - also made me gain weight.
Elmiron - Sick to my stomach every day for a month tried 3 different times every which way....I can't take it - oh and my hair started to fall out
Cystoprotek - gave it a try didn't seem to help
Elmiron Rescue instills - didn't help
Sanctura - helped for a bit then had hard time emptying bladder
Cimetidine - took for 6 months never seemed to make a difference
Hydro distention - put me into the worst flair ever!
Use all the time - Hugs from my bulldog
12-09-2008, 01:17 PM #2
- Join Date
- Apr 2008
Sorry about your hairloss....I take the Elmiron orally and have noticed my hair is thinning.....I use to have thick hair too.....the Elmiron is helping me so I have decided to continue taking it.....I have noticed that my hair loss has begun to taper abit so I don`t see as much as I was in the bathroom sink when I do my hair......I have been on Elmiron for about 5 1/2 months.....
My best to you.....
12-10-2008, 06:38 AM #3
FBD, we are all different with Elmiron and please mention that you are noticing hairloss to your doctor. There are other causes for hairloss to look at as well. I had hairloss, but I don't believe it was solely due to the Elmiron. I took it orally for 7 months, but I had already had IC for 10 years prior to Elmiron being approved for the use on IC. Anyway, I found through going to a number of doctors that I was also anemic. I too had very thick hair and I noticed the thinning and bald spots shortly after I stopped taking the Elmiron. We lose hair all the time, but that is when I noticed a huge difference. Actually my mom saw me lean over one time and she is who noticed that I had a bald spot at the very back of my head at the neckline.
Anyway, I went through lots of tests to see what was going on. At that time, I didn't have this site to refer to, so I had to do alot of research on my own. My doctor and I came to the agreement that it was a combination of things since my hairloss was off and on for a number of years. I even ended up requiring a wig due to the bald and very thin spots. I had lost all the hair around my face and ears. I had been through so much pain, treatments with meds and very tough chemicals like DMSO for a number of years. My dermatologist believed that it wasn't alopecia, but that my hair follicles were stunted due to what all was going on in my life with IC symptoms, especially the pain and being extremely anemic. I was already taking Fish Oil. He increased my iron and gave me an ointment (the ointment did nothing). I also believe when I started wearing the wig, that took alot of stress off of me. I started using Nioxin treatment which I found out about on here. It can be purchased at salons. I went 3 years without getting my hair cut because I was so embarrassed about my hairloss. After a number of months on my supplements and the Nioxin, I finally started noticing that my hair was coming in. When it was long enough that I felt comfortable going to a stylist again, I was so fortunate that a friend recommended someone that had clients that had gone through chemo and Alopecia. She styled my hair so that I could stop wearing the wig and also suggested Flaxseed capsules. I also heard on Oprah the need for Magnesium to help our bodies absorb vitamins, so I tried that too. Anyway, within a couple of months, I could tell such a difference in my hair. It's still not as thick as it used to be and even a year later that I no longer need a wig, I still take my supplements and when I wash my hair, I massage my scalp for at least 5 minutes and never brush it wet or blow dry it. I just "finger comb" it. I style it after it's dry.
Regarding the pain meds. I know we are all different, but my doctor and I have worked very well together to make sure I was on pain meds that really didn't effect me that much. I take Lortab and have been on it a number of years. Much of the time in the recent years, I haven't needed as much, but I know that I can function quite normally on it whether I take it at night or during the day. Like I said earlier, we are all different and I know some people can't take Loratab without being tired or loopy. I am fortunate that I can take it and it has continued to manage my pain even when I am having the occasional flares.
Sorry for the novel!
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