DMSO and Rescue Installs

[Kellie]

My Doctor thinks that I will be helped by DMSO treatments but after reading some of the stories about them I am I afraid to try them, he wants to use the 50% solution and I heard that can permanantly damage your bladder. My IC is mild but it still causes me quite a bit of grief and I don't want to do anything to make it any worse. Can anyone explain to me what the difference is between DMSO Installs and rescue installs, is there also a risk of damage to your bladder/bladder muscle with the rescue installs? I would really appreciate any information you can give me on the subject.

Thanks,
Kellie

[ICNDonna]

The solution used in DMSO instillations is usually Rimso 50, which is a 50% solution. However, it is usually diluted with an equal amount of a sterile water solution, which brings it down to the recommended 25%.

Donna

[GriffsMommy]

Donna is right that the solution comes in 50% straight out of the bottle. I am not sure how many dr's dilute it with sterile water to 25%. I told my uro at the time that was the only way I would do it but you could tell I was the only patient in their practice that had ever asked for it to be done that way. There is info under this section of the boards, should be a sticky so it stays at the top about research done about DMSO. It says anything 30% or stronger has the potential to cause damage to the bladder muscle. I demanded 25% and got it. If you think you want to try it I would let your dr know you don't feel comfortable doing anything stronger than 25% and if he won't do it that way then you'll have to pass on the DMSO. I did six weekly instills of it and it hurt each and every time for me and never gave me any relief. There are others on the boards that swear by it as their main treatment. The only way you are going to know if it works for you is if you try it.
The rescue instills should not damage your bladder. They use more soothing meds that help to numb and heal your bladder. I do them currently and though I don't know if I'm actually getting better from them or not they sure feel nice when they are in because it really does a good job of numbing the bladder. Hope this helps.

[bunnykinb]

I didn't know if lidocaine gel came in a stronger percentage since 2% just isn't helping me. I see that you have 5%. Is this the one that you put inside your urethra at the tip? Also, what symptoms did the more frequent heparin instills help with?

I had asked the chief of urology if my DMSO were 25%, he said he thought so. But, when a claim went to my house, I saw it was 50%.

[Kellie]

Thank you for your reply. I told my Doctor that I didn't feel comfortable doing DMSO at 50% and would only do 25%, he suggested doing an installation of Marcaine, Heparin and Kenalog instead. I feel more comfortable with that so I am going to start that tommorrow. Thank you again for the information, I hope you are doing well.

Thanks,
Kellie

[bunnykinb]

Is marcaine a numbing liquid and Kenalog a steroid?

[GriffsMommy]

Bunny,
The 5% lidocaine that I have is an ointment that I use for my VV and put it on at night before bed. It's different than the gel that is in the urojet that I actually put in my urethra which is the 2% gel I believe.

[Kellie]

I'm pretty sure that kenalog is a steroid and marcaine is an anesthetic.

[ICNDonna]

You are correct --- kenalog is a steroid and marcaine a surface analgesic.

Donna

[snowgirl]

marcaine is also longer acting then a lidocaine gel. Vicky

[born2swim]

You are correct --- kenalog is a steroid and marcaine a surface analgesic.

Donna

Donna... I am thinking about trying DMSO and wondered if you have any advice. I know you have tried many things and DMSO did help you. What would you suggest for someone that is starting off with DMSO instillations? How often should it be done? How long should it be held in the bladder? Is 25% effective and is 50% too "damaging"? Is it painful (should I take an Ultram before or dip into my Darvocet script)? How long does the garlic smell last? If it is irritating, how long does that last? What makes the instillations easier on the patient?

Thank you (always) for your valuable advice!

[Claredale]

Donna... I am thinking about trying DMSO and wondered if you have any advice. I know you have tried many things and DMSO did help you. What would you suggest for someone that is starting off with DMSO instillations? How often should it be done? How long should it be held in the bladder? Is 25% effective and is 50% too "damaging"? Is it painful (should I take an Ultram before or dip into my Darvocet script)? How long does the garlic smell last? If it is irritating, how long does that last? What makes the instillations easier on the patient?

Thank you (always) for your valuable advice!


I truly wouldn't let the doctor start out with 50% DMSO. I went through it, and even though I don't have any proof except for my pain level and time of recovery getting worse instead of better. I believe that those treatments damaged my bladder. I originally had mild to moderate IC, went into remission and when I came out of it, I had pain. It was pretty intense and sudden, so my doctor started DMSO. 3 sets of 6 week treatments over a several month, maybe a year period. By my third set, I was in excrutiating pain during the entire procedure, I didn't have any relief trying to get it out and I was in pain for several days afterwards even on strong pain meds. Plus I stunk the house up big time over the weekend at least. I had my treatments on alternating Thurs, then Fridays since my doctor didn't work every other Friday. I couldn't really smell it, but I could see the look on my kids's faces. They were teenagers and tried very hard to be supportive, but I know that the smell was awful, since I have since smelled it on someone else that had it done. I have heard 25% is easier to handle. This was well over 10 years ago, so I didn't know to ask anything different. My doctor did a 2nd hydro and I then was diagnosed with severe IC and my doctor referred me to Dr. Ragi Doggweiler who is a pelvic pain specialist. She doesn't even believe in DMSO treatments at all.

Please just research it more. I wish I would have had this forum to know that I had options. But I didn't know I did back then.

Hugs, T83

[jen74]

I have a friend who asked her uro to start out using a very small amount at first since she is sensitive to things. She did the DMSO a long time ago and said it was better, that they actually changed it, and now people are having more pain with it. Not sure how that all goes as I have personally never done the DMSO, I do the heperin,lidocaine, saline instills weekly. EVeryone is different, and will respond differently. The best thing you could do is research it as much as you can before you decide what to do. Good Luck.
Jen

[Paininthe*.*]

I've had 7 DMSO instills, some at 25% and some at 50%. I showed the medical article to my Uro and he agreed to do the 25%, but after 4 instills, he suggested trying the 50%...said it would give me better results. Honestly I don't feel a difference. I believe the difference is not holding the DMSO in very long...I go 15 minutes max regardless of what they say. I think it cuts down on the side effects. DMSO is one of those things you just have to try, but be aware that it can increase your symptoms, and you may not feel relief until after you've had a few...I felt a BIG difference after DMSO #3. I'm going next week for my last instill, and I'm happy to say they have made a BIG difference in how I feel. They aren't fun to get, but they aren't THAT bad. Some people have had very bad experiences, but maybe we all have different "types" of IC. Hope this helps, and good luck.

[bunnykinb]

I had 20 DMSO from 7/07 through just recently. I found out it was 50% instead of the 25% I asked for. I felt I am worse now than before.

[Heart]

Does anywone know of any Doctors in Southwestern Michigan or
Northwestern Indiana (South Bend) that use DMSO treatments?

[L. Thomas]

Have you had instills before or is this the first instillation you will have?

Please do not think DMSO and rescue instillations are the same. Some MD's do add DMSO to the standard rescue instillation.

Instills that contain sodium bircabonate, heparin, and ldoocaine are NOT the same as instillls with DMSO.

I have read enough about DMSO to decide my pain would have to be pretty bad for me to try it, but I have been doing home instillations since 2004 and have not had pain from the instill.

There is a sticky on DMSO on this forum. You might want to read it.
http://www.ic-network.com/forum/showthread.php?t=22386

There is another board for rescue instillations that may give you more information. You might try starting a new thread. This is a pretty old thread.

[Wolfe]

Thanks, everyone, for sharing so much info. The education I've been getting on this site for years is just invaluable. I think you've saved my life multiple times.

Does anyone get horrible headaches with DMSO instills? Last week's lasted for 2 days and bordered on a migraine. I'm really not looking forward to tomorrow's "last" treatment for this round. But since they help my bladder, I'm going in tomorrow asking LOTS of questions.

Also, if I'm on Elmiron, wouldn't heparin instills be redundant? It is my understanding that they're practically the same thing.

Thanks so much for your help! :bow:

[ICNDonna]

Elmiron and heparin are entirely different medications. Both, however, can help sooth the bladder lining.

Donna

[Wolfe]

Thanks, Donna.

Once again, I show that I have a lot more reading to do on this site. My URO told me that Elmiron is just a capsule form of heparin. And this was way back when we were participating in the study for FDA approval and trying to decide whether it was safe to volunteer as a human guinea pig or not. I sure am glad his apparent lack of info didn't result in my turning permenantly purple or something. Oh, well. He was a very sweet old man.

You rarely say how YOU are doing, but I hope you're doing very well and having a great summer.
HUGS from July

[Dolphjoy]

I have 5 % Lidocaine ointment that I use for external and internal for when I go to PT or have pain. Hope this helps. Someone asked about this when I was reading, but sorry, now I can't remember who.