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  • malone
    replied
    understand

    Hi! I also had the DMSO thing done more times than I can count. They really seemed to help me a lot! As you have said it is uncharted territory so you never no when is too many and visa versa. I was in the midst of a group of 10 instills --1 every other week and this was probably my 70th all in all when all of a sudden I could not hold it even a minute! I made it to my car and just barely to the bathroom before the vomiting began! I thought I was having a stroke b/c my throat went numb from the lidocaine! It goes on and on and luckily no permanent damage but just wanted to let you know it can happen anytime! Good luck and feel good-Malone

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  • tigger_gal
    replied
    I have never had it, but, I know that it really helped my mother, many years ago. If you have diabetes please look further into this treatment. From what I can remember it can and will affect your vision. They also say that it can also make your bladder worse now and/or later. You know there is a down and an up side to every med for IC, and we all react differently.

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  • GriffsMommy
    replied
    I haven't had the DMSO done but it is one of the treatment options my uro mentioned when he confirmed my IC by biopsy. He is trying me on Elmiron, Elavil, and Urelle first and he did mention this if I didn't feel like the meds were working. I had read that a lot of people find it painful and I mentioned that. He said his patients have tolerated it very well but if it was uncomfortable for me then we would stop doing them.

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  • Bethrlk
    replied
    Dmso

    I also have been helped with the DMSO treatments - in fact I am currently in a six week cycle of receiving the instillations every Monday. After the 3rd instill my pain and the urgency and frequency seem to lessen.

    If you are in a great deal of pain, talk to your doctor about the benefits vs. the negatives. There is a lot of info about DMSO on the boards - but you need to see what your own urologist thinks.

    Good luck!

    Hugs,
    Beth

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  • nvl
    replied
    Dmso

    I have been doing these instillations for over 4 years. I use, DMSO, Solu Cortef, Marcaine, Heparin, Sodium Bicarbonate. Each time they are very painful that evening, but by morning I have relief. THe only thing I don't like about the DMSO is that I have a very garlicy smell afterwards.

    The rescue instillations are very worth the pain I go through.

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  • HGC
    replied
    I have DMSO instilled in my bladder every 3 weeks for the past 15 years and it has been a lifesaver for me. Like Donna said the first few treatments can be very painful but it gets easier with time. I think the key is to have your Urologist instill lidocaine into your bladder first and leave it there for 15 minutes to numb your bladder prior to instilling the DMSO. This is how my Dr. does it and it really helps. I always have the DMSO instilled on a Friday so I have the weekend to rest since I never feel great right after the instillation but then my symptoms really improve. Hydros and DMSO have been my treatment for the past 15 years. When the DMSO stops working for me I just have a hydro and then the DMSO works again. Feel free to PM me if you have any questions.

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  • sandramac
    replied
    Been there done that.
    Hugs Sandra

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  • Roxie2007
    replied
    OH ok.......it sucks when you have to try so many different meds just to get relief! I see you tried Noratriptyline........did you try Elavil? It works great for me. Roxie

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  • sandramac
    replied
    Hi Roxie
    i've tried Elimiron.Ditropan Oxytrol. Antrax , noratripiline Lyrica, Tramacet . Cystitsait , but not dsmo yet.
    thanks Sandra
    Ps also #3 hydros, and hunners burnt off In 1st hydro.

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  • Roxie2007
    replied
    HI! Have you tried other medications for your bladder problems? Roxie

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  • sandramac
    replied
    Thank you both for your replies & advise, i will do more reading 7 hope to get more replies from other's who have had it done.Until I make up my mind .

    Hugs Sandra

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  • humpieumpumkin
    replied
    Donna is right it does help lots of people. That is a tough personal decision. I would weight the benefits versus the risk.

    Erika

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  • ICNDonna
    replied
    DMSO actually helps a lot of people. It worked for me for several years. The first few treatments were painful, but after that not bad. As a precaution, I suggest that if you decide to try it, you request that the solution contain no more than 25% DMSO. (There can be some negative side effects if a stronger solution is used long term).

    Donna

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  • sandramac
    started a topic Dsmo ?

    Dsmo ?

    Hi all
    I really neeed your advice , Seen my uro on Mon, i had 3 hydros , i've also done a cystistat trial. Still do not know what i was given.That was 8 months ago.My pain is incressing ! I'm on the Elimiron but in constant pain as my uro said in the 4 years he's been treating me my bladder capcity has gone from 350 to now at 170cc. He has suggested that I try the DSMO . I'ts scares me to see some negative stories here .But iIm running out of options. he says it's no diffrent than other installs. All advise is welcome. He also suggested I have the surgery for incontenince , It's a hour surgery and he says I will no longer have leakage issues.

    Hugs to all Sandra
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