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  • Re: DMSO - Research Shows Possible Damage to Bladder

    They do not use DMSO very much anymore. It obviously was not very effective in treating IC otherwise it would be used more than it is today. It is a chemical and can be caustic to the sensitive lining of the bladder. DMSO was originally used as a muscle pain reliever( though it was used on the skin, Not the mucus membranes). I have heard a few stories of people who did get some help from it but many say it was very painful and did not help. Some got worse afterwards as well. This is why they do not use it very much anymore I believe.

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    • Re: My 2 cents

      hi was reading your letter here it's 2016 and my euro in Canada wanted to give me the DMSO instillation, it was torture as soon as it was in my bladder I was crying and running down the hallway. Both the doc an nurse didn't listen to me whin i told them it would be too painful. I'm thinking of making a complaint about them at the Board of Physicians and surgeons...I don't know what i'll do now I have the inserts, it's only helping a little. I've tried quite a few things and they haven't been working...

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      • Re: DMSO - Research Shows Possible Damage to Bladder

        I brought this up here maybe 10 years ago when my Dr. had said "promise me that no matter what, even if you see another Dr., you won't use DMSO". That was Dr. Brookoff. A few people disagreed because it helped them. If it's the only thing that helps you, if you don't have to use it weekly, then I can see that there's no other choice. I think it (and any help) should be an option if it does help alleviate some patient's pain.
        I'm now studying for med school and don't know a lot but know that DMSO is caustic and thats why it works. (college chemistry, microbio, anatomy are really interesting if you have time to grab a few used textbooks. The tissues in the bladder are........well if you can imagine that as we are formed as a fetus, we are formed around a hollow tube (for simplicity's sake. Look up a youtube video on the fetal development and "cell differentiation" to see and that tube is exposed to the outside or even considered by some to be so similar to what is external to our internal tissues, nutrients, blood supply etc. And all of my teachers say "nature is lazy" so our body is composed largely of very similar tissues and cells that make those tissues into organs, and only deviate when they really specialize (like a cell that creates mucus in the bladder). DMSO causes burns. if one lets it sit on the skin it will burn. DMSO may damage the nerves enough to stun them from relaying pain temporarily. It will also cause permanent damage to the nerves as nerve cells cannot regenerate which is why the Dr. and I both thought of it as a last resort option. It can also scar up the bladder more. But again, I really feel like people should have the option to do what they need to in order to cope and address their own disease.
        DMSO never worked for me anyhow. And knowing what I do about what Dr's learn I'm surprised it's used and cheaper than higher doses of Elmiron. A bit higher dose of Elmiron than insurance would approve is what has helped me largely over 10 yrs.
        I am REALLY curious about it being bacterial or microbial by something that has not been identified. the Stomach is also made up of a mucosal lining to protect it from the acid inside (Hydrochloric). Only in 1982 did they discover that H. Pylori bacteria are the main cause of ulcers. The bacteria adapt themselves to the caustic environment, they bury themselves in the stomach lining where its very difficult to kill them with antibiotics and it looks like they are fairly resistant. I think no one knew it existed before 1982. And now they can do a blood test for antibodies, urine, or breath test over a weekend. Remarkable!!! I pray for this for IC.
        It just sounds so similar to what we have. Tissue damage, tiny ulcerations, pain, *maybe an undetectable bacteria. I'm hoping to soon we can prompt enough interest and research into fining a CAUSE for IC. Whether it's autoimmune or nano microbes that we don't know to look for yet.....I hope we can find a cause and treatment, as well as alleviating symptoms, so that no one else has to go through this.
        -Diagnosed 2003
        -Currently taking: 3 elmiron in morning and 3 at night on empty stomach, Percocet as needed, valium as needed for spasms, a TENS unit around the clock during flares.

        Tried instillations of elmiron, DMSO, prelief, antidepressants, pygidium, raw vegan, juice cleanse, every diet one can name, hot baths (make me worse), and all the cranberry juice in town but none of these worked for me. For me, diet only impacts my pain if I'm having a bad flare or off of Elmiron, much like drinking alcohol while having a stomach ulcer would hurt.

        love, light, health -Shelley

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        • Re: DMSO - Research Shows Possible Damage to Bladder

          I see nothing has been posted here in over 2 years. When I go to the AUA guidelines, it still shows DMSO as the only approved instillation medication. I had 8 weekly treatments back in 2013 with straight 50% solution. I'm wondering if my pain tolerance is good bc my bladder was hemorrhagic noted on cysto and hydrodistention the day before. So I know it was severe when I received the instil the following day. While painful, it was not intolerable. I went into remission for years. I guess I am wondering why they have not changed the guidelines if it is so dangerous?

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          • Re: DMSO - Research Shows Possible Damage to Bladder

            Originally posted by DopeyRN View Post
            I see nothing has been posted here in over 2 years. When I go to the AUA guidelines, it still shows DMSO as the only approved instillation medication. I had 8 weekly treatments back in 2013 with straight 50% solution. I'm wondering if my pain tolerance is good bc my bladder was hemorrhagic noted on cysto and hydrodistention the day before. So I know it was severe when I received the instil the following day. While painful, it was not intolerable. I went into remission for years. I guess I am wondering why they have not changed the guidelines if it is so dangerous?
            DMSO is still helping some people with IC. The damage to some bladders was with long term use at high concentrations. The very first post in this thread suggests that if DMSO is used, it should be no more than 25% of the total solution --- so Rimso 50, which is 50%, needs to be further diluted according to the study described in post #1 in this thread.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

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            • Re: DMSO - Research Shows Possible Damage to Bladder

              I went through 5 weekly Rimso instillation. I am 10 times worse than I started. I think dmso damage my baldder. Hope it is not permanent.

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              • Re: DMSO - Research Shows Possible Damage to Bladder

                Originally posted by DopeyRN View Post
                I see nothing has been posted here in over 2 years. When I go to the AUA guidelines, it still shows DMSO as the only approved instillation medication. I had 8 weekly treatments back in 2013 with straight 50% solution. I'm wondering if my pain tolerance is good bc my bladder was hemorrhagic noted on cysto and hydrodistention the day before. So I know it was severe when I received the instil the following day. While painful, it was not intolerable. I went into remission for years. I guess I am wondering why they have not changed the guidelines if it is so dangerous?
                I should check this site more often but have been fortunate enough to have some really good weeks & months & then Rx on bad days. I know at UCSD Dr Parsons was instilling Elmiron solutions. EVERY Dr tries to tell me to go see him. I did. He wasn’t my cup of tea, nor helpful at all for me personally otherwise I’d have gone back. BUT he does help some people because he’s busy. It might be that his instillations were a trial 10yrs ago.
                I still wouldn’t use DMSO personally because it didn’t work for me. But that’s amazing it helped you! There could be many reasons why it works for some but I don’t know if anyone is researching why. & I assume there’s not a lot of funding for new meds?
                I read a histology report on a IC bladder showed excessive cells.....either histomines or WBCs & I cant find it this moment but I’ll look.
                With hemorrhagic tissue I think it wouldn’t necessarily be more painful than the most painful you already had (which is A LOT I’m sure). I think the sensory neurons would be more superficial and it looks like hemorrhagic goes into deeper, vascular tissue layers where more motor neurons would be (I am only assuming based on limited info). Sort of like what “they say” about burns on skin. The bladder is really multiple layers of tissue. But that’s just my guess based on little research.
                TMI warning: I do know from looking & from urinalysis that I often have a TON of sloughed off epithelial tissue in my urine. No infection, no blood, just shedding of cells because the lining isn’t protected from urine I think. & always when I’m hurting more.
                Hopefully there’s new info to research. I just googled & a whole bunch of new info popped up. If I see anything dmso related I’ll post it. ❤️
                -Diagnosed 2003
                -Currently taking: 3 elmiron in morning and 3 at night on empty stomach, Percocet as needed, valium as needed for spasms, a TENS unit around the clock during flares.

                Tried instillations of elmiron, DMSO, prelief, antidepressants, pygidium, raw vegan, juice cleanse, every diet one can name, hot baths (make me worse), and all the cranberry juice in town but none of these worked for me. For me, diet only impacts my pain if I'm having a bad flare or off of Elmiron, much like drinking alcohol while having a stomach ulcer would hurt.

                love, light, health -Shelley

                Comment


                • Re: DMSO - Research Shows Possible Damage to Bladder

                  Thank you Donna! You are just the sweetest and most helpful person out there!

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                  • Re: DMSO - Research Shows Possible Damage to Bladder

                    I have heard some have had success with the dmso......so it continues......it is a brutal medication....there's always 2 sides to these things and they don't have much else to offer

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                    • Re: DMSO - Research Shows Possible Damage to Bladder

                      So I went to the doctor today and he said he no longer uses DMSO, but it's because of cost. He said the cost to his office is $400 and they average return from insurance is $30. Crazy

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                      • Re: DMSO - Research Shows Possible Damage to Bladder

                        DMSO/RIMSO-50 is definitely an outdated bladder instillation that has been replaced in most clinics with the heparin/lidocaine rescue instillation. As we said years ago, two research studies presented at the AUA conference found that DMSO at the 50% concentration could cause irreversible muscle spasm. I was there at that meeting and asked every major IC researcher/clinician what they thought of that study. Almost all said that they never use it at the 50% concentration and, instead, used it in a cocktail with other medications such that the final dosage was about 25%.

                        However, even years ago, some doctors absolutely refused to use DMSO. Ray Rackley of the Cleveland Clinic stood up during that AUA poster session and said that they no longer used it in their clinic because they believed that it did cause long term damage to the bladder. However, Chris Payne at Stanford said that he felt that it did have a place in IC care though the heparin instills were usually tried first.

                        I did six DMSO treatments at the 50% dosage back in 1993 and can tell you that they were very VERY uncomfortable. I made the mistake of trying to drive home with an instillation in my bladder and got caught in traffic. Terrible experience and mistake. After six treatments we determined that it did not help me at all... and now that we know about the IC subtypes, that makes total sense. I do not believe that DMSO would be helpful for patients with Hunner's lesions, pelvic floor dysfunction, pudendal neuralgia or central sensitization IMHO.

                        http://www.ic-network.com/videos/

                        Jill
                        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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                        • Re: DMSO - Research Shows Possible Damage to Bladder

                          So I"m on the best 10 days I think since this IC ordeal started over 1 year ago, and I think it is from dmso. I've had 23 total instillations. All were heparin/lidocaine except for 2 dmso. This last dmso instillation I held in for probably 3.5 hours. It didn't burn at all. When it was in it felt good but not as good as when I had heparin/lidocaine. Then after a week i started feeling really good compared to what I have been.
                          I've been reading about chronic cystitis, and hidden infections in bio-film, I think dmso might be useful in those cases of IC. I know I was feeling pretty good back in August when I was on anti-biotics and I believe my IC is related to an infection. I'm getting another dmso instill in about 1 week. That will be 4 weeks since the last. The provider who is doing these to me says she has had patients where she would do a dmso instillation once every 6 weeks and eventually they stopped coming for instillations. It is too soon for me to post a success story yet but I feel like I'm really doing good. I have been drinking alot of d-mannose the last 4 weeks and I have been taking NAC and monolaurin the past 4 weeks but I really believe it was the last dmso instillation. I wish I would have tried this sooner. Maybe I would have been on the road to recovery sooner.

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                          • Re: DMSO - Research Shows Possible Damage to Bladder

                            Originally posted by neohioic View Post
                            So I"m on the best 10 days I think since this IC ordeal started over 1 year ago, and I think it is from dmso. I've had 23 total instillations. All were heparin/lidocaine except for 2 dmso. This last dmso instillation I held in for probably 3.5 hours. It didn't burn at all. When it was in it felt good but not as good as when I had heparin/lidocaine. Then after a week i started feeling really good compared to what I have been.
                            I've been reading about chronic cystitis, and hidden infections in bio-film, I think dmso might be useful in those cases of IC. I know I was feeling pretty good back in August when I was on anti-biotics and I believe my IC is related to an infection. I'm getting another dmso instill in about 1 week. That will be 4 weeks since the last. The provider who is doing these to me says she has had patients where she would do a dmso instillation once every 6 weeks and eventually they stopped coming for instillations. It is too soon for me to post a success story yet but I feel like I'm really doing good. I have been drinking alot of d-mannose the last 4 weeks and I have been taking NAC and monolaurin the past 4 weeks but I really believe it was the last dmso instillation. I wish I would have tried this sooner. Maybe I would have been on the road to recovery sooner.
                            I'm glad it seems to be an answer for you; I know you've had a tough time. I do suggest you be sure the solution is no more than 25% DMSO.

                            Warm hugs,
                            Donna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                            Have you checked the ICN Shop?
                            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                            Patient Help: http://www.ic-network.com/patientlinks.html

                            Sub-types https://www.ic-network.com/five-pote...markably-well/

                            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            [3MG]

                            Anyone who says something is foolproof hasn't met a determined fool

                            Comment

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