DMSO painful treatments

[i3luebyrd]

I have Kaiser health insurance and my assigned urologist has recommended DMSO after I told him I have had a positive response from Heparin instills.

I've had two instills of the DMSO (Rimso) and each time it has been incredibly hard to "hold it" and is incredibly painful until I urinate. The nurse has instructed me to hold it for 20 minutes, but the Kaiser paperwork says to hold it for 2 hours. Also, she pours lidocaine over the opening, but I don't think the Rimso is diluted with Lidocaine or saline.

Anyone who has had experience with DMSO, does this get easier? When am I supposed to see results? Also, I have just read the article about possible bladder damage from DMSO. I'm surprised that Kaiser would be offering a treatment that is so outdated/damaging. Does anyone know if this theory has been supported with evidence?

[bubbe1]

Dmso

HI,
I haven't had a DMSO instill, but I do belong to Kaiser, in Va.

When I got my IC DX, my urologist said I need DMSO instills. I had already read some info. on DMSO and was hesitant to use it so I mentioned some of the IC rescue instills. My uro. poo pooed those other treatments, as well as Elmiron and said that DMSO was the only thing that really works.

I switched uros. and the new one, though unfamiliar with the newer instills was willing to let me try, so I've been using the Heprin/Bicarb/Lido combination. So far, not much change, but I did have some problems keeping the last three from leaking out,(supposed to hold it for 30 minutes), so it's hard to say whether that will eventually help.

I did discuss DMSO with new uro and told him that I read that it can cause bladder problems. He said that you can find problems with any drug if you read enough, and he seems to still feel the DMSO is best.

It seems to me, after all that I've learned here, that the docs at Kaiser, though nice, are not up on the latest treatments. They have their protocol and that's it, so you need to be your own advocate and go to the doctor armed with knowledge and don't be afraid to ask for what you want. BTW, you can change specialists within Kaiser.

I should add that I am not a doctor, so I'm not suggesting one treatment over another. Perhaps DMSO would work well for you, and cause no problems at all, but you should feel like you have choices if you want to try something else.

Also, re the difference in info on dwell time for the instills, the nurse who does my instills said the docs used to have patients hold the medicine for two hours, but new reaserch that she found says 20 minutes is sufficient so she lobbied the doctors to change their protocol and they did.

I hope you find what works best for you,(we're all different).

Let us know what happens.

[ICNDonna]

I was treated with DMSO for several years before it stopped helping. The first few treatments were very painful, and I was ready to say "no more" when I woke up one morning and realized I had slept through the night with no bathroom trips.

Twenty minutes is usually the time recommended before emptying your bladder after a DMSO instillation.

One word of caution: DMSO should not be more than 25% of the solution instilled. DMSO comes as Rimso 50, which is 50% DMSO --- so it needs to be diluted with at least an equal amount.

Donna

[kadi]

About a year after I got IC, I was horrified by the medical costs I'd run up in one year (with Blue Cross insurance) and talked with a friend of mine about switching to Kaiser, which is less expensive. He is a doctor at Kaiser and he advised me against it, saying that Kaiser is fine if you're healthy or if you have a well-known and common condition, but not if you have something rare or if you've needed less common treatments. He told me that Kaiser would be likely to make me go through DMSO, Elmiron, and Atarax again (even though 2 of those were intolerable and the DMSO just wasn't effective enough) as those were the front-line treatments at the time - and less costly than home instillations and pelvic floor physical therapy. I had hoped that times would have changed since that advice in 2004, but it appears not from your post.

I have heard that some Kaiser urologists are good, but have also heard stories like yours. The only things I can suggest are to try a different local Kaiser (we have lots in our area) and/or to go to the patient advocate and talk with them about what you need.

All that said, I also had the DMSO treatments for a year. They did reduce my symptoms, but not enough, which is why I switched to the heparin instillations. But the DMSO treatments were much less expensive and didn't involve doing the treatments twice a day, which is what I need to control my severe IC.

Hoping you find relief soon,

[kadi]

PS. Two hours is too long to hold DMSO! My doctor at Stanford told me that 20 minutes provides maximum benefit with less side effects, said that more time than that is just irritating. Also, Donna is correct, the DMSO should not be used straight - it needs dilution.

I didn't have any benefits until 2 weeks after I finished the series of 6 (once a week) instillations. Then my symptom levels dropped by about 40%.

The home instillations work better for me - I can have hours without pain or pressure.
My IC is pretty bad though, started out with voiding 60x a day, and has taken a long time to improve. Most IC patients do not have IC at the level I've had it.

[i3luebyrd]

Thank you all for your responses and advice.

Kadi, I had also heard these things about Kaiser and also ran up a ton of medical bills with Blue Cross. Thanks for the feedback on DMSO. Do you feel that it permanently damaged your bladder muscles as some others feel? How did it reduce your symptoms? Urgency or pain? I have severe pain and don't really mind the urgency (hey, as long as I can live a normal life, I don't mind going to the bathroom a lot).

ICNDonna, it is really encouraging to hear that the relief "snuck up" on you like that. At what point would you say you first noticed relief? I sent an email to my urologist (a Kaiser thing that I totally love) and told him about the dosage being possibly dangerous. They were using 50% DMSO straight out of the Rimso bottle on me with no lidocaine. His nurse called me back and said they could add lidocaine/saline and dilute down to 25% if I liked. When I went in for this new treatment the pain was SO much better! Thank you for this advice! I was able to hold it for 40 minutes, although I may not do that next time. When the nurse instilled it, she told me it doesn't work as well if you use the diluted dosage. Well, I'd rather risk that than risk the damage of my internal tissues, thank you very much!

Bubbe1, it's good to hear that you've made the Kaiser experience "work for you" instead of conforming to it. That is a good lesson for me. When I had the Kaiser nurse on the phone, I asked her about Heparin and she said they would try it if DMSO did not work for me. Also, I didn't know I could request a different specialist. Cool!

Thanks for all your helpful responses!