DMSO Instills vs. Elmiron Instills

[Melissa82]

Hi there!
I was just wondering if anyone could help me clear up a little confusion or share experiences with me.

A little over 6 months ago, my uro tried the DMSO instills. I made it through 4 of the 6 weeks, but it just caused my symptoms to get worse and I was in pain all the time when normally I don't have any pain.

My new uro-gyn recommended Elmiron instills. I had heard before that DMSO can bother a lot of people, but the Doc said that she never had any complaints or reports of pain from the Elmiron instills.

Now, I'm fully aware that there can and will be some discomfort from the catheder (sp?) but the thing I'm wondering is if the Elmiron instills can cause the aching burn and constant pain that the DMSO instills can? Has anyone had both, and how did they compare?

Also, with the Elmiron instills: I don't really have pain with the IC, but I have bad freq/urg. Does the Elmiron instill help with that?

(My doc did give me some info, but I figured I would ask people that had gone through it. The doc might not have heard complaints, but then again, maybe people just didn't complain...)

Thank you!

[L. Thomas]

I guess I am not goinng to answer your question in the way you need. I have been doing home instills for several years but not with Elmiron. I have used heparin. I will be substituting Elmiron for heparin after my current supply of heparin is used. My urogyne told me I should get the same results, only more $$$.

The lidocaine, heparin, sodium bicarbonate instills have helped me with the frequency, urge and retention. I have not had DMSO but from what I understand there are a lot of ICers that have discomfort from those instills. There are a few that have posted that have had some problems with the lidocaine instills, but normally the results are positive.

[Melissa82]

Thanks :)

Any information on instills is very helpful! I'm kind of bouncing between two docs that have different views/treatments for IC, and so I've had to become my own researcher and advocate (as most of us do!) so the more information I have on any kind of therapy, the better!

I'm trying to avoid doing home instills, mostly because I'm a hopeless klutz and am convinced I will do more harm than good... but I will bring this (any any more) info to my doc and see what she thinks, or if she'll be willing to mix me a custom cocktail.

Thanks again for your help!

[Claredale]

Hi Melissa, I went through 3 six week treatments of DMSO years ago. I certainly wish I would have known what I know now and I would have said no more as well. I definitely believe that they did more damage than good for me. Plus it was back when they used the 50% mixture. I have had IC for 20 years so back then I didn't have anyone to go to for their experience. Yes, there was info on the internet, but not this great site yet that we could actually post actual stories.

My urethra can't handle caths at all anymore. I don't know if that is due to the DMSOs or what. I used to be cathed alot in the beginning since I had so much retention and my doctor's office was right around the corner from my work. When I started going to the uro/gyno that I am being treated by now, he suggested the instills for my pain. I had already had the interstim which was very successful, but I was trying to drop some of my meds. When the nurse originally started the instill, which was heparin, it felt pretty good, but within minutes, the cath became my enemy, so I never got to actually give it a full try. I do know several people on here that swear by their instills. I hate that it didn't work for me because I did learn to cath myself, which I never in my life thought I would be able to do. L. Thomas has some very informative info on cathing on here. So if you do decide to give it a try, just read back at some of her posts, or I am sure she would be glad to give you some hints.

Hugs, Tracey

[L. Thomas]

L. Thomas has some very informative info on cathing on here. So if you do decide to give it a try, just read back at some of her posts, or I am sure she would be glad to give you some hints.

Hugs, Tracey


I will be happy to share my experiences with anyone. Feel free to pm me or post. I subscribe to the Rescue Instillations for IC and DMSO, Cystistat, Heparin-Interstitial cystitis bladder instillations boards.

Louann

[Melissa82]

Thanks again for the advice.
Tracey, I'm sorry to hear about how badly the cath treatments went for you :( but thank you for sharing your experience. I hope that nowadays you're doing well.

I definately will consider talking to my urogyn about learning to cath myself (even though it makes my hands shake just thinking about it! lol). If not, her office is litterally a mile from my apartment, so hopefully things will work out.

I'm going to put off the treatments for a few months, I've got a contract job that I am nervous if the instills are as bad as the DMSO ones, I'll not do so well... Anyway, thanks again for the advice!

[Claredale]

Yes, I have mainly good days now. I have a day every so often that gives me a little glimpse of how bad it used to be, which makes me all the more thankful! Watching my stress level and taking care of myself has also been helpful. Which is easier since my sons are now grown and gone.

I know what you mean trying to schedule around your life. Just be careful and not push yourself too much, avoid stress as much as possible and watch your diet if you are diet sensitive.

T83