Worse after first DMSO

[sorrelapp]

I have had IC for 10 years, came out of remission this summer. I tried instillations with Hep/lido/kenalog and had a bad flare after the second one. I did the hydro/distension and was worse after that. My MD suggested trying DMSO once a week for 4 weeks, I thought I had nothing to lose at this point. I did my first 4 days ago and have been flared up since. I also was light headed and little dizzy thie first few hours afterwards. I have used DMSO on my horses for years, so I know I am not sensitive to it topically. Does the bladder usually get worse after DMSO treatments? I am thinking of cancelling my appt this week, too scared to do it again.

[ICNDonna]

It's not unusual for the first few DMSO treatments to cause pain --- they did for me. But once I got past that the DMSO did help me for several years.

Donna

[kadi]

I felt like #&!^ for several weeks when I first did DMSO cocktail instillations. I'd barely recover from one, then go get another one & start over again. I did though, have symptom improvement about 10 days after my last of the 6 weekly instillations. So, for a year, I had them once a month for maintenance.

I found though, that the instillations helped, but not enough, so I changed to home instillations of heparin, marcaine & sodium bicarbonate. I do them twice a day. They help a lot.

I hope you find relief soon,

[sorrelapp]

I am going to try to get my MD's nurse to call me back this week. I am not sure yet if I will do the next instill.... I will see how my bladder feels the next few days. I have been surviving on UTA. As soon as my urine is not blue anymore, I flare back up again. Thanks for the info everyone :smile tee