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Had my Uro appt today and he started DMSO

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  • mary124
    replied
    I have had DMSO treatments about 4 times since 1992 (like someone mentioned before Elmiron was even around) they did help me for the first 3 times around--but the last time around unfortuntely they didn't) I also remember that the nurse told me to hold it for 45 minutes to an hour! Here I see people say only hold it for 15minutes. When I did have them done I would schedule them on Friday afternoons this way I could go home and have the weekend to recover, as yes it did hurt a little, having the cath. put in, but it also depended on the nurse as well, I remember one nurse who just jammed it in(ouch!!) but the others they gently guided it in). Good luck as I really hope they help you as much as they helped me at first.

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  • GriffsMommy
    replied
    I think because they started them last Tuesday they want to keep them a week apart. I got my next one scheduled for the end of the day on Tuesday and then Wednesday is the 4th of July so I don't have to work that day. I was fine the day after, it was the day of that I felt crappy last time and now I don't feel so hot today either.

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  • girl
    replied
    My uro used to set aside Friday afternoons strictly for DMSO patients; many (including me) couldn't go to work for a couple of days because the smell was so strong and lasted 2-3 days. Maybe if you continue, you could schedule for Fridays?

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  • GriffsMommy
    replied
    Oh thanks Girl, I know that not everybody has had bladder damage because of the DMSO. I just don't think that I'm willing to take that chance with the 50% solution when there is research showing that it can happen.
    I feel like I have to baby my bladder. I have had surgery preformed on it and then the IC, I don't want to risk anything worse going wrong. I guess we'll see what happens when I go in for my 9:20 appt tomorrow morning. I almost home that we decide not to continue them because I am NOT looking forward to going back to work if I have it done but I really can't financially afford to miss work because I've missed alot lately. Guess I'll just make sure to take plenty of water with me and my AZO and have heating pad ready.

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  • girl
    replied
    I had the DMSO treatments back in '95. Now, keep in mind that that was a very long time ago (Elmiron wasn't even around then), but they used a 50 to 60% solution and had me hold it for 45 minutes to an hour. It was mind numbing pain and it didn't help. At all. BUT here it is all these years later, and I don't have any damage from it. (Maybe because I only did the one six week series?).
    Hope you feel better soon!!

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  • GriffsMommy
    replied
    They told me to hold it for 15 minutes. I think I made it to 14 minutes but it was really hard to hold it that long. As soon as I got up and got dressed I wanted to go pee but I made it for 14 minutes.

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  • kadi
    replied
    Hi Christine,
    I just looked at a bottle of the DMSO I had left over from when I did the treatments. It was 50% that I used also. When I did the instills we used 5 meds total (Rimso-50, SoluCortef, Heparin, Marcaine, Sodium Bicarbonate).

    I wonder if adding those things lessens the risk? Also, how long did your doctor have you hold the solution? My doctor said 20 minutes only, said you get the benefits that way without as many side effects as you get if you hold it longer.

    Anyway, a few more things to talk with your doctor about...

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  • GriffsMommy
    replied
    I think that's my fear Jen, that he's using the 50% and it might actually be helping me. I just don't feel that the 50% is safe after reading all of the info about it last night. I guess I'm afraid it's going to help but will want the 25% and he won't want to do that or something.
    The only way I'm going to know is to wait and ask on Monday when I go back. It did scare me though to read the info about the bladder damage with the DMSO if it's too high of a dose.

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  • jen74
    replied
    Hi Christine.
    I hope the DMSO treatments help you. I personally did not do them, I did research also and did not feel I wanted to go that route right away. I am doing the heperin, lidocaie,saline instills. They help me alot, but lately I am having alot more pain.
    I would make sure he is using a low dose of the DMSO, I believe no more that 25% or something like that. Some doctors use 50% and I think that is insane. I would play it by ear. See how you feel by the next visit. If you are feeling ok, then maybe try it again and just see how it goes. Your body will usually tell you if it is not happy. I am keeping my fingers crossed for you.
    Jen

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  • GriffsMommy
    replied
    Oh Thanks Kadi!
    I'm just kinda freaked out once I read the info stating that a 30% solution can cause permanant damage to the bladder muscle and that they shouldn't use anything stronger than 25% solution. I think they used it straight from the bottle which would have been 50% from what I'm reading.
    I do seem to feel better today, don't feel my bladder as much but I'm going to ask next week what percentage they are using and if he is willing to do it at 25% instead of the 50%.
    I asked about rescue instillations and he said that this would be his next step and then there would be other things to try if this didn't work for me.

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  • kadi
    replied
    Hi Christine,
    I had a series of 6 once a week instillations in the summer of 2004. The first couple of treatments were rough, but after that they got easier & I did have significant symptom reduction from them. I did once a month "maintenance" treatments for a year after that. They reduced my symptoms a lot, but...

    In summer of 2005, I did decide to try home heparin instillations to see if I could feel even better & I did.

    BUT I didn't regret trying the DMSO because the instillations are less frequent than the home heparin & the insurance company paid for them without hassle (the home instills took extra paperwork & time spent hassling about "medical necessity".)

    I hope that you get good results from them & they bring about better days for you soon!

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  • lan
    replied
    Christine - Just wanted to say that I am sorry that you are not feeling well and hope that you will be feeling better soon...Linda

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  • GriffsMommy
    replied
    Oh thanks Beth, it's good to hear from someone who has had good results. I'm not sure what I'm going to do from here, I guess it depends on how my bladder feels the rest of this week. It's not very happy with me now but that may change after today.

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  • Bethrlk
    replied
    Hi Christine and Gals,

    I have been treated with 6-8 week cycles of DMSO at least twice a year with wonderful results overall.....Christine, if you can tolerate the first few, you may notice a dramatic increase in feeling better after the 4th or 5th instill. I know there are some people here who have had bad experiences with the dmso - but I believe if the dosage is kept where it should be, that there is little chance of bladder damage....talk to your docs if you have any great concerns, and feel free to PM me if you have any questions!

    Good luck - I'll have a good thought for you!!

    Beth

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  • leelee88
    replied
    Good luck Christine,
    I am not one that can not do the instills do to the fact that what happened to my bladder during the hyrdo/cysto.. I sure hope it helps you

    Oh what did he say about the swelling?


    Ronda
    Last edited by leelee88; 06-20-2007, 02:57 AM.

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