Diagnosed recently, first DMSO yesterday...ICK

[kellyann]

Hi...I'm 34 and have been recently diagnosed. I had some idea several years ago that I had IC but with all the wrong doctors and such never dealt with it. So here I am now trying to gather any and all info on IC. I had a DMSO treatment yesterday and all I can say is OUCH!!!! My doctor told me that when I have a really bad day I can come in for a bladder installation of several medicines that provide immediate relief. Any one ever had this? Does it work? How soon after DMSO can you do this? They also started me on Elmiron, any concerns I should be aware of...other than the basic side effects? I am also looking for a site that can provide me with a detailed list of trigger foods. I know of some, but would like to see more. I'm sure all of you can help me with a lot of this and I hope that we can share stories and such. I need support...I need an ear. I have 4 small children and it's so hard to function some days. Sure wish I could snap my fingers and have it be gone :)
So anyway...any info is greatly appreciated! Thanks! Kelly

[Tunia]

Kellyanne,
This may be just what you're looking for regarding trigger foods:
http://www.ic-network.com/handbook/diet.html#topfive (Chart of Problematic Foods)

[Kathi]

DMSO usually gets better as time goes on. I would think he is talking about heparin, lidocaine mix for quick relief, but you have to get the bladder calmed down before this will work. When I get a bad flare that just won't seem to go away I go in for a series of heparin instills. DMSO is an anti inflammatory to get the "red" out of the bladder & usually is a series of about 6-8 & then some people do it monthly. Go to our Patient's Handbook & read all about the meds available. Welcome to your new IC family, Kathi

[kellyann]

Yes I was referring to the hep/lido...they also told me to bring in my Elmiron tablets and they dissolve those in the mix as well. So it doesn't work during a flare up? Is that what you meant by "calming the bladder down"? I am scheduled for 6 treatments...I hope they get easier...I'm still in a good amount of pain today :(
Thank you for the reply and welcome. Glad to have found you all.
Kelly

[kellyann]

Tunia....the link says unavailable??

[traceann]

Kellyann, try this one, see if it works! I saved it for myself, since I could never find the darned thing twice! But now, it's second nature to me anymore, and I have only been diagnosed and on the diet and Elmiron (plus ditropan and vistaril) since Nov of last year! Oh yeah, and WELOME!! ;)

http://www.ic-network.com/handbook/diet.html#list

Hugs,
Tracey :)

[kellyann]

:woohoo: Thanks a ton Tracey!!!! It came up fine and is now added to my favorites! Pretty sad that I'm excited about adding it, but I am!!
HUGGGZZZZ Kell

[Tunia]

Tracey, thanks for getting that link through to Kellyann. I have a copy of that chart attached to my fridge...a helpful guide.

Edited b/c it's nice to spell someone's name correctly!

[traceann]

Oh no worries! I know, I swear I carried around that darned list everywhere I went that might involve food, lol. I ended up saving that link for myself, because it was crazy, I never could find that list twice! Figured I make it easy on myself, lol. Glad I was able to help! :)

I know it sounds crazy but I sometimes seem to have a harder time remembering the "good" foods than the "bad" ones! I end up depriving myself of something I CAN eat safely, lmao. Go figure, only 36 and the brain already taking 'vacations' on me.....;)

Hugs,
Tracey :)

[SrMaggie]

The day of and the day after I was very uncomfortable after having DMSO. I sat in a tub of water for a long time and cried. I did get some otc pyridium which works in a pinch. It's not quite as strong asRX, but it helps me enough.

[Amelia14]

Kellyann, Hi My name is Kim. I was diagnosed with Ic about two months ago and have been miserable since with all these medications I am taking. I have three small children myself and somedays I just don't think I am going to make it. Isn't it good to know that there are others like us that are willing to help, even just writing that they know what you are going through? I just found this site today. I just have to figure out how to write to people. Ha, Ha

[Kiyoka]

hello, i had dmso/heprin treatments, and the helped me after the sixth time. but everyone is different. it worked sooo much better then all the oral meds, but then again everyone is different. i hope you get some relief soon

[Sarojini]

You can do both heparin/lidocaine "rescue" instills AND DMSO at the same time. In fact, some doctors even mix up a cocktail that includes all of the meds in one big mix!

I had a series of 10 DMSO treatments back when I was first diagnosed and they didn't work well for me -- I remained in pain and almost seemed to get worse. BUT, they help lots of people here, and make sure to give it a chance, as it often takes 4-6 treatments before many notice a real difference. It's a waiting game....like a lot of things with IC.

I now do heparin/lidocaine treatments myself at home when needed -- I use them as a rescue treatment. They work okay -- when I'm having a night where I just can't get to sleep because my bladder won't calm down, I can do the instill and take some pain medication if necessary, and that settles things down so I can go to sleep (usually). Usually the heparin/lidocaine instills are used to stop a flare like that because the mix is immediately soothing; in contrast, DMSO can actually be a little irritating to the lining of the bladder and you can experience increased symptoms for a while after a treatment sometimes (I know I used to -- although a previous uro didn't believe that and would try to use DMSO instills as rescue treatments, which obviously didn't work for me. I switched docs to one who was more understanding.)

[brighteyedsoul]

I had DMSO treatments and after the 5th one they finally decided they weren't for me. They they tried ditropan but that didn't work well and I am still on Elmiron and then I went to my doctor and got Larvcet and that works for the pain. I just hope the Elmiron works for me

Hope the DMSO continues to work for you. As they say you have to have patience

[kellyann]

I am scheduled for my third DMSO tomorrow, the second one was a bit easier than the first. Hopefully that means it will continue to get better. My doctor gave me ultram for the pain, it does nothing. WHat is Larvcet? Is it a narcotic? My uro is against narco for pain, says it will make it worse.

It's nice to have a place to come to for support. To be able to talk to people who are going through the same. I have so many questions and I appreciate the answers and information. The nurse at my uro's office told me of the instills I can have in a flare, thanks for letting me know that they can be done at the same time as DMSO. It may make it easier to handle. I just hope it starts working soon. I know Elmiron takes awhile, but I need some relief!