elmeron do or don't

[skinny29]

yes i was on elmeron for a while but i went off of it because it made me forget short term things like my childrens names! my husband said that on the news that elmeron was causing severe memory loss so i went off. so what will happen with my i.c.?  plus its345 dollars a month. any suggestions

[Toomanyadvil]

Thats what the heprin treatments did to me...not the odor part. But the first one was so great and then they became intolerable for me. I wasnt able to even make it home before I had to let it go and when I did the licocaine had worn off in my urethra and it felt really awful. By the time I got home I was miderable. They never got any better for me or really helped anything. But that is just my experience I've heard other people have had some awsome effects.
Not to mention doing them at home is so expensive.

TMA

[melo1224]

Be aware that DMSO treatment will cause an odor. When I took the treatment I smelled from my pours for 24-48 hours and it's embarassing. It leaves a very weird taste in your mouth. For me the DMSO made things worse. The first treatment felt great, but the 2nd and 3rd were not a good experience. I went back to rescue treatments solutions of Heprin, Lidocaine, Saline

[Toomanyadvil]

Thank you so much.
I'm going to post a question in an actual thread.

TMA

[David A Burks, MD]

DMSO is the other FDA approved treatment for IC.  It is instilled into the bladder thru a catheter, usually along with heparin and solumedrol as a coctail.  DMSO is an antiinflammatory agent (among other things) and I use it when patients fail oral  therapy.  Another new option is bladder instillations of lidocaine, a local anesthetic to treat acute exacerbations of IC symptoms.  Its a daily treatment for 5 days and was reported to work relieving symptoms for at least a month after treatment.  There are other research options given in clinical trials. Check the ICA website for a list of trials and locations.  

[Toomanyadvil]

Sorry, it Posted before I was finished.
I have been looking to try a new treatment because my main symptom is pain that has not responded to any that have been tried thus far.
I know there is a clinical trial being done for a new IC medication. But wasnt aware that theer was another FDA approved treatment. Maybe I have missed out on trying something.

Thank you

TMA

[Toomanyadvil]

Hi DR

Whats the other FDA approved treatment for IC besides Elmiron?

[David A Burks, MD]

Hi,  Elmiron is one of 2 FDA approved treatments for Interstitial Cystitis.  I have never heard of memory problems related to Elmiron.  I've seen nothing to date that shows elmiron has an effect on the nervous system. The other question is--is it helping your IC symptoms?  Elmiron doesn't help everyone who takes it (50-60%) and it could take 6-12 month for maximum effectiveness. There are other treatments for IC that are covered by insurance or cost a lot less, if the elmiron is not working.  Ask your Urologist or seek a second opinion from someone who specializes in IC about your treatment options.  There is a los of basic info on the Interstitial Cystitis Association website--  ichelp.org.  If your husband can remember the source of his elmiron and memory news I would like to have it.  I'll do some investigating as well.    Good Luck
Good Luck.