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  • DMSO - Research Shows Possible Damage to Bladder

    Because this comes up so often, I thought I'd reprint an article which appeared in our newsletter in 2002. Please note that DMSO, as a therapy for IC, is falling out of favor due to the success of the newly used "rescue instillations" which "numb" rather than irritate the bladder. DMSO can provoke intense pain and, for this reason alone, it is worth asking your doctor about using a "rescue" instillation with hep, lidocaine, sodium bicarb in lieu of a DMSO cocktail.

    AUA Annual Meeting 2002 - UPDATE ON DMSO
    Research now suggests that DMSO has the potential of causing damage to the muscle of the bladder when used in higher dosages. Lower dosages are recommended.

    Presented at the 2002 AUA conference "DMSO - Does it change functional properties in the bladder wall" (Diethild Melchior*, C Subah Packer, Tomalyn C Johnson, Martin Kaefer, Indianapolis, IN) tested various concentrations of DMSO on strips of bladder muscle to try to determine what, if anything, the DMSO did to muscle. They found that DMSO triggered intense muscle contractions and, at doses higher than a 30% solution, caused what appeared to be long-lasting contractions that could be irreversible. Since the normal dosage used for humans is 50%, researchers suggested that the dosage be reduced to, at most, 25% to avoid any possibility of muscle damage.

    This study, by far, elicited the most animated discussions of the IC research studies that day. One physician from the Cleveland Clinic said that his clinic no longer used DMSO and that they felt that of the patients who required bladder removal, many had DMSO induced damage to the bladder from long term use. This was a very bold statement for the conference. Yet, other doctors suggested that the study was "amateurish." They felt that testing bladder muscle was not an accurate assessment of how a whole bladder would respond to DMSO. They suggested that further studies were needed before they would stop using DMSO.

    If there was consensus in this discussion, it was that DMSO should only be used in one or two series of treatments and that further long term use, particularly if the patient had little response to prior treatments, would likely be ineffective as well as cause potential damage to the bladder muscle. With respect to the dosage of DMSO, many commented that they already used DMSO cocktails which reduced the overall dosage to around 35% rather than 50%. This new research suggests that a dosage of 25% seems to be prudent.
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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    So, my uro said at the last appointment that if Elmiron does not work for me after 6 months (which it seems to be....thank goodness). Then I will have to start DMSO cocktails or heparin (I have a choice but they suggest DMSO cocktails first.) How do I know what the concentration of DMSO in the cocktail solution is? I will have to do them at home since the hospital is 2 hours away, so can I look at the bottle?

    Hopefully I won't have to do any instills because the Elmiron will keep on working more and more....but I am doing all my research now, just in case.
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

    Comment


    • #3
      When I first read the report, I asked my uro about the concentration. In my case it was lower than the recommended 25%.

      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


      • #4
        It seems like maybe a massive overview of long term IC patients' histories would be really informative, with extra scrutiny given to the patients that ended up undergoing bladder removal, to see if DMSO had a stronger than average presence in their prior treatments.

        Perhaps also any information noting the condition of their bladders over time, though this data probably wouldn't exist as abundantly as instillation records and such.

        Comment


        • #5
          This thread seems kind of scary to me. I mean, you want a treatment to help you, not harm you! It frustrates me to no end that we don't know more than we do about IC and various treatments.

          I have noticed that all the uros I've been seeing lately have all been against DMSO...maybe there is a movement away from that as a treatment now.

          Blessings,
          Lori

          Comment


          • #6
            Where might their basis for this thing be compiled? My Doc is giving straight 50% dmso.


            If there is a source other than PubMed, please let me know -- thanks.

            Comment


            • #7
              I totally agree with this research! I have no idea what concentration the DMSO was when I received my 6 treatments, but before DMSO I had never had a bladder spasm - after DMSO I have them daily & still going 3 years later.
              ,
              Karma

              Dream with the feathers of angels stuffed beneath your head - Clutch

              IC, PFD, IBS, Fibromyalgia, MPS, Migraines, Allergies, Scoliosis, Bi-polar, Vulvodynia......

              Comment


              • #8
                I had 50% DMSO when I had them and it was the most painful thing anyone's done to me while awake. Since then, 2 other uros have told me they don't believe in DMSO and were shocked when I told them this concentration. One is even afraid that since my IC likely has been going on since childhood, and then 50% industrial solvent was dumped into my bladder, I might have nerve/muscle damage now. *sigh* I tend to think they may be right -- my hubby and I both notice my pain and retention symptoms got much worse after the DMSO series.

                At least I know I will never have to have it again!
                ****
                Jen

                *Diagnosed with severe IC in 2004
                *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                **I am not a medical authority nor do I offer definitive medical advice. 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.

                Comment


                • #9
                  I haven't been on DMSO since last summer, but when I did, the DMSO was Rimso 50, which is 50% DMSO, which was diluted with saline solution (10cc more saline than Rimso), then further diluted with lidocaine.

                  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


                  • #10
                    I remember a a couple years ago I posted that DMSO can cause bladder damage, and it is possible that it can affect your vision.. I knew this for many years, as my mom has ic. My uro dose not use them to the best of my knowledge. They did help my mother out greatly, but she was advised not to get them any more. After that she went in every 6 months to a year for a hydro, that helped her for a long time.
                    The sad thing is there are many treatments that help one but hurt another, and we all have different ic problems, and pains.. This is why IC is a very hard disease to treat.
                    'The will of God will never take you where the Grace of God will not protect you.'

                    Comment


                    • #11
                      It's so confusing! To be honest, I did feel that I got quite a bit worse with the DMSO treatments, but I always thought it was because I kept getting infections from the instillations themselves. I mean, naturally I felt worse each infection I got. But now that I see this I have to wonder if the DMSO wasn't also doing some harm to my bladder.

                      I don't know what concentration they used on me but I know they didn't use any lidocaine at all, not even to numb my urethra for the catheter, and it hurt intensely to have it in my bladder and I was in really bad pain for a couple of days after each instillation, and then by the next week I'd show up for the next one, I'd have a full-blown UTI going.

                      Blessings,
                      Lori

                      Comment


                      • #12
                        Donna, you're lucky yours was diluted. My first uro (I'm on my third now) used to just draw the stuff up from the stock solution bottle and instill it -- I suspected he was doing this for a while because when I urinated after it was somewhat "greasy" down there, and since I use DMSO as a solvent in the lab, I'm familiar with it and know it has a slightly "greasy" consistency. Then I actually saw the nurse do it once. ARRRRGH... absolutely no saline dilution, and definitely no lidocaine, even though I asked. He said, "Oh, it doesn't hurt, come on..." HA! I don't know, maybe it didn't hurt some others, but it sure hurt me.
                        ****
                        Jen

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. 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.

                        Comment


                        • #13
                          I had the DMSO treatments about 12 years ago and they never helped me. I have a concern about cathing everyday w/ the "rescue" treatments. I mean, what are the long term effects of the meds we use in those?
                          Was diagnosed with IC in 1993 after extensive endometriosis and total hysterectomy.
                          MEDS: Attarax, Zantac, Zanaflex, Oxycontin, Lortab, Urimax and daily instillations of Lidocaine, sodium bicarbinate and heparin (lifesavers)
                          Have used Elmiron & Elavil w/o any improvement

                          Now have a possible dx of fibromyalgia. Working on confirming that or hopefully ruling it out

                          Comment


                          • #14
                            DMSO how often?

                            Originally posted by ICNDonna
                            When I first read the report, I asked my uro about the concentration. In my case it was lower than the recommended 25%.

                            Donna
                            Donna how often to you have the DMSO treatments. I have been having them at 50 percent. Started off every week for 6 weeks, then monthly and more recently about every 6-7 weeks. I spoke to my uro this week and I am going back to 25% and trying monthly again for awhile. While the treatment is painful it does help me. Do you have a cocktail ? This is my first time on the chat room.
                            regards Gloria

                            Comment


                            • #15
                              DMSO was the only time I had white pieces of flesh looking things in my urine. It was a terrible experience I now wish I researched better before trying. Mine was 50 50 and I hated it...and I was only holding it 15 minutes which was a major struggle.
                              Faith, Hope, and Love,
                              Katrina


                              I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                              IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                              or find me on facebook http://www.facebook.com/kat671?ref=profile
                              Be the Miracle! & Pay it Forward!

                              [email protected] please contact me...I am here to help!

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