To try Dmso or something else?

[jlp]

I went to the "new" URO. today..he was really nice....they always are for the first visit!:lmao: He wants to start DMSO treatments in 10 days. I have only been dignosed(sp) since june 06..is this a common treatment to start with?? I started the enablex in july and elmiron in sept. I have read some of the post on here and it sounds kinda scary and painful. Any ideas on other options or meds i could try? I told him that 2 ultram work for about 3 hours, and lortab works for 4 , but that i always have to suffer in pain until time for the next dose. He is wanting to look at my other URO's reports, that is why he wants to wait,to start the DMSO treatments. :help:

[Katrina]

It is not an uncommon treatment to start with but it certainly wouldn't be my first choice. Experts these days are starting with rescue instillations and if I had my choice to do over I would rather do things that way. DMSO comes as Rimso 50....that is how it is FDA approved but at that percentage it can do dammage to the bladder. (I think it did mine) If you do choose to try DMSO now or at any time make sure that your doctor dilutes it to at least 25% or less and some other tips to make it easier are throughout this message board...but that one is a MUST! Many doctors still like DMSO since it is researched and FDA approved for IC. Rescue instillations are a bit newer to be used first but they have less risks to your bladder and are much easier to tollerate.

Other things besides rescue instillations:
antacids, antispasmodics, antihistmines, and many other ideas:
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.

Good luck with whatever you try!!! I hope it works out!

[Rita Rake]

I agree with Katrina. I had my first DMSO and couldn't go through with the next one. I am hoping that it didn't cause additional damage because I held it in for 2 hours (per dr. recommendation) and he used 50%. After 2 1/2 weeks I am finally getting back to where I was prior to the instillation. The Rescue sounds a lot safer.
RR

[kadi]

I've had both DMSO and rescue instillations. Both have advantages and disadvantages.

I had a series of 6 DMSO cocktail treatments (once a week) and then one treatment a month for a year. They definitely helped my IC, reduced my pain level considerably. The initial series of 6 was not fun, the first two treatments were not easy. But, I had the treatments on Fridays after work, so I could rest on Saturday & Sunday. Then I felt better for the rest of the month. I do want to say that I NEVER held the DMSO more than 20 minutes. My IC specialist at Stanford said that holding it longer just increases side effects, not benefits.

I had better results from rescue treatments (Marcaine/SodiumBicarbonate/Heparin) I do at home. But, the advantages to the DMSO cocktail (mixed with other meds) were for me:
1. Easier time getting insurance to cover them
2. Less chance of infection because of less frequent catheterization (once a month vs. 3-5x a week)
3. Convenience of not having to mix, measure medicines and self catheterizing at home.

The advantage of the rescue instillations:
1. Not having to make doctor appointments, being able to give myself a treatment as needed (this saved more than a few work days!)
2. Immediate relief from flares

Hope that gives you some things to think over.

You did not mention trying Atarax or Elavil. I would try those before any instillation medicines though! You can look them up in the Patient Handbook link at the top of the page.

[braykittie]

I am scheduled to start self instillations of DMSO October 5 (I live in a very small community far away from a Uro). So my question is: If I am presently in "NO" pain or discomfort why would I introduce something that can cause pain and discomfort? I am currently taking elmiron, cytotec, atarax. Since starting the cytotec I have flet so much better.
At what stage did you agree to DMSO or the idea was intorduced of instilling DMSO. Those who have tired it don't give a reference point as to where they were on what I think of as the "IC Curve", IC Mild, IC Moderate, IC severe and what was your pain or discomfort at the time of instillation. Was this an effort to escape current pain or were you looking to the future in hopes to avoid PAIN?
I just keep going back and forth "Do it--Don't do it--yes--NO. I have read the posts and am thoroughly scared at this point. Need Clarification--Please!
Braykittie

[kadi]

I was pretty sick when I did the DMSO treatments: constant discomfort, constantly feeling like I needed to void. My life was fairly restricted: was barely working, couldn't wear pants (only loose skirts), couldn't drive more than 1/2 hour, couldn't exercise.

I probably would not have had the DMSO treatments if I had had only occasional pain. I'd have made sure I was on optimal doses of oral medications (top 3: Elavil, Elmiron, Atarax) & following the diet very strictly. If that still didn't stop the occasional flareups, I'd look into the rescue instillations for those bad days...

That's just one patient's perspective...Hope that helps!

[Katrina]

I didn't know people were doing self instillations of DMSO. Self instillations are usually done with rescue instillations which are safer and easier to tollerate...infact many find them to relieve pain even while holding it.

I tried DMSO after years of treatment and than got worse after a hysterectommy....at that point I was interested in trying something that was too much of a hastle when I first got diagnosed. Instead of getting better I got worse. I would say at hat time I was moderate IC. I was hoping to go through the short term extra discomfort but long term much better. At this point in my life I could more easily handle the short term extra symptoms which I doubt I could have if I was working.

The good points of DMSO is that if your doctor knows his stuff....and you try it with full knowledge of what you are going into and what chance you have of success is that the discomfort of it is temporary but the relief (if it works for you) can be very long term.


I personally think that it is a treatment that has helped many and hurt quite a few. I suspect it may have a higher chance of helping you if for some reason you seem to have an undetectable infection that started your IC. I also think that there are other treatments that should be considered first. This is something you should discuss with your doctor.
Many doctors will lean towards DMSO first because it is FDA approved for IC and if that is the main reason your doctor wants to try it I would question him about the research on dammage to the bladder when used at 50% rimso. If he is aware of it and has a plan to prevent it that is a good sign! I would also question about rescue instillations since many of the experts these days see it as their most commonly used first line of treatment. If he is aware of this and has a reason why DMSO would be better for you...good, but if he isn't than I would ask him to look into that.

Good luck!!

[braykittie]

Thanks for the replies. I have decided to cancel my appointment and schedule one with the doc to discuss my options more thoroughly. I am unwilling to cause myself pain or any disconfort when I am feeling GREAT at this point and time.
I have learned so much on this site and appreciate all opinions and examples, then I can make my mind up.
Thanks again!
Braykittie

[StephanieS]

I did Dmso treatments and they did help but its only a month later and I am slowly starting to go to the bathroom a little more and sometimes the pain in my side comes back. I did feel better after the 5th and 6th one but I think I could have done a few more to make it last longer. They do hurt bad but get the freezing gel, the pain killer, pyridium, and make sure its a 25%mixture. The first 2-3 are really bad but if you do what I said it should be easier. I tried elmiron before DMSO but my uro wasn't happy with the results.

[ICNDonna]

I was on DMSO for several years and it really seemed to help. That said, if you're feeling great, I honestly don't see a reason for the DMSO. I was painful before the DMSO and far less painful after the initial irritation from the DMSO itself passed.

You might want to print out some information from the Patient Handbook to take to your appointment.

Donna

[lulu22]

Is DMSO supposed to be hold more after each treatment?
I had 4 instills, but I could hold it more in the first (almost 1.5 hrs) , and in the other, I could not hold it for more than 10 - 20 minutess, or is it normal to have more urge in the last instill? I did not had pain, just severy urgency, URGE INCONTINENCE. My bladder contractions where so strong, that I pee all the instill on my way home

[Katrina]

lulu, doctors say different things about how long to hold DMSO but I understand that 15 minutes has still gotten people good results with less problems.

Elmiron is a lot easier to hold so a very different instillation.
I don't know why it got harder for you to hold the Elmiron but if you were having spams sounds like something was irritating you...either your urethra hated the catheder, Elmiron, or something else about it. I don't think that is normal. Normally things get easier with rescue instillations which is what Elmiron is. You should discuss that with your doctor.

[lulu22]

Katrina:
I meant DMSO, that was what I could not hold!!!!!
I tried the Elmiron, for 8 months, and did not worked (but in pills)

[mary124]

About 6 weeks ago I finished a month of DMSO treatment, had some improvement, but I have noticed that in the last 2 weeks everything has started to go down hill again. Thought about calling the doctor, but since I go see him next week, I can wait it out.

[jlp]

Mary...how many DMSO treatments did you have? I go to the dr today at 230 to set up the appts for the DMSO treatments and/or to see what else is available.

[Imustpee]

I was treated with DMSO in 1976 and again in 1994....I had no relief from it at all, but some people do...

[mary124]

Jeannie-- I had 4 weekly treatments. This is the third time around. The first time was in 1992 which helped and the 2nd time was in 2000 which didn't. This time had a new doctor, he wanted to try this to see before we did anything drastic. Like I mentioned in an earlier post, I don't think it helped.

[**Angie**]

I did them for about a year--the series first then once a week. At first they seemed to be helping--I'd have a bad day on DMSO day then I'd have two good days--pain free days.(I'd have DMSO on Thurs. then the weekend would be a good one) Then they just weren't working anymore. In fact I started getting worse. Anything to do with DMSO?? Or it is just the way this stupid IC is going!!!

[Katrina]

When I helped with the surveys on DMSO it seemed that quite a few people that were helped by DMSO and originally very happy later on got a lot worse than had been before trying it. I don't know what the reason is for you.....but if it is DMSO you wouldn't be the only one. :grouphug: Hope you feel better!