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Elmiron at Month 7

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  • flowerangela
    replied
    jen i recently started therapy/counseling too and i know how you feel about wondering if it will help or not. it cant cure us from the ic i am in a dark place as well. im about a month in on the elmiron and i am experiencing soooo many side effects,makes me want to just throw in the towel on it.im thinking about purchasing dr moldwins book as well.i also agree what we thought were problems before ic,just dont compare to this. be strong. we will make it through.im hoping ic is not forever.

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  • SoCalJen
    replied
    more pain that sensation these days

    I wish I could say that my pain has diminished after six months on the Elmiron. Sadly, what was pressure/frequency has become pressure/frequency/pain.

    I am seeing a homeopathic pain specialist that is supposed to be spectacular and so far, he's got me on fish oil, vitamin D and another supplement. Because of the monster flare touched off by the Lyrica, I'm trying to settle things down before trying the supplements. I have taken some Valium and Uribel and those see to have brought my pain level down from an 8 (which was just horrendous in terms of trying to write a policy paper) to a 4.5. At least I can think and am not bursting into tears every five minutes.

    I got the Valium from Urgent Care over the weekend because I had crossed over to a level of discomfort I've never felt before. Funny thing is, I've been on the Elmiron steadily all this time. I question whether it is working or will work for me because I just can't see having the flare of my life so long into my treatment.

    I hope my doctor will consider the benefits of the oral Valium on me and come up with another way of managing this. Vicodin and Percocet were not effective so it may be that a muscle relaxant is a better way to go than an opiod pain me. I guess we'll see.

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  • nevergiveup
    replied
    those prickly things in ur bladder

    I just wanted to tell u that I too feel those prickly feelings in my bladder. BUT I also know that before the elmiron the prickly things were exterme pain areas so I am guessing that the elmiron is working because it is forming a wall and only sum of the irritants from my food are leaking into the bladder wall and my nerve endings are feeling them. I think that u have formed a thicker lining with the elmiron and stopping it might bring ur symptoms on more. I could be wrong but in my experience when I tried to decrease the elmiron I started with the hell symptoms worse.

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  • suzannes
    replied
    Jen,
    It was right around 1 year that the Elmiron started working for me. I know how you feel. I did Uracyst, Elmiron instills, PTNS, atarax,elavil,strict diet and nothing seemed to work, but I feel better most days. Have you thought about Botox? It might be worth a try before InterStim. Some people get relief from Neurontin. Think about all of those people who go into remission, it could be us one day! Try to stay positive, I know it is hard at times.

    Suzanne

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  • sailawaygrl
    replied
    Have you ever increased your dose of atarax? I don't usually suggest med changes to people since I am not a Dr but I take 100mg of hydroxyzine at night and it helps me sleep and my IC. Don't give up yet on the Elmiron, it took me over a year. It is frustrating, I know, I've been there too. I can't remember, have you had a hydro? Do you know if you have hunner's ulcers or not? Just a thought. My Dr told me that if someone does have them they can be lasered and that can help. We are considering another one for me just to see if I have developed them but I just don't think I would get that "lucky". I know surgery isn't lucky but it would be so nice to go to sleep and wake up with much less pain. I suffer pain daily too. Mine is much more under control than it was, but I think I could draw an outline of my bladder I am so aware of it all the time! Is your Dr suggesting interstim for pain? I had one suggest it to me for pain. I know some people see relief from them but I would research the success rate of them for pain before you go there. If you do decide to do it and get relief from pain, that would be wonderful.

    Hang in there! It HAS to get better, at least hang on until you see the new Doc. You wouldn't want to have to start over. Yikes.

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  • Snowden1
    replied
    Jen,
    You summed it up so well. We just never knew what we had until we lost it. I was only going to suggest trying the elmination diet in a strict form. Like try chicken and rice for a week then add in other things. I have serious food problems and can only eat a very few items. Maybe if food is not your issue you could at least eat more things after ruling things out that could be a problem.

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  • SoCalJen
    started a topic Elmiron at Month 7

    Elmiron at Month 7

    Still no change. Jeeze, I wish I had something good to report. I am still dealing with the never-ending sensation punctuated by periods of flares, despite the Elmiron, Hydroxizine, PTNS and PT. After my eighth instill with flaring afterward, my doctor agreed to let me pass on the ninth and final round.

    A week ago, we added Lyrica into this mix. 150 mg/day last week moving up to 300 mg/day tomorrow. So far, I can really feel the prickly flip-flopping of my bladder. My frequency (along with that joyous full/pressure feeling) has intensified. Also, my face has broken out in quite a lot of acne. Can this really be happening? STILL? All I can say is, I believe I have an intimate understanding of what hell feels like.

    Through the confidential employee assistance program at my work, I have begun to see a therapist because I recognize I'm in a deep dark place right now and not emotionally equipped to deal with this. The first session didn't really go that well. I cried the whole time. I don't really know how this will help me because it's not as if it's going to repair whatever is wrong with my bladder. It is always there. Sometime being prickly, sometimes sore and aching and too often relentlessly throbbing to the point where I think I will actually go out of my mind. I know many have been to this point and back and that keeps me going. Still, as the months pass, I feel less and less hopeful.

    I'm going to a pain mgmt specialist on March 23. Through my primary care doc, I've tried Vicodin and now Percocet with no significant reduction in symptoms. I have kept a food diary but I'm still afraid to try foods from the "try it" list so it's hard to know what foods trip me up. I've been religious about the diet and do not see a connection between what I eat and how my bladder feels. It feels lousy most of the time no matter what "safe" foods I eat.

    All I can do is keep trying, I suppose. My doctor brought up Interstim last week. I am horrified by that but I foresee that in my future, sadly. I wasn't able to take the Elavil or Pamelor because they gave me terrible rashes on my face. I would like to explore whether there are other drugs in that class that won't cause rashes. I would also like to know when I should pull the plug on the Elmiron. Seven months of this with no results. At some point I have to admit to myself to being in the percentage of people it doesn't help, right?

    I can't get into see Dr. Parsons until June but my other doc is a gyno who worked w/ Parsons and is great. He's kind of baffled as to why the instills and meds aren't doing something. He's hoping the Lyrica will help but so far, no good. For now, my plan is to try all other drug options in Dr. Moldwin's book, one by one, to see if something clicks.

    I am grateful for this message board and for several folks who have PM'd me with recommendations and ideas to try. I wish with all my heart and soul that something would work here. I appreciate this safe place to vent and the reminders that I am not suffering alone. Feeling really defeated and low. Thinking that, before IC, what I used to think were big problems were actually nothing at all. There is nothing I wouldn't give for those days again.
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