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  • fivefoottwo
    replied
    five foot two

    HI Cmclien,
    I am not ruling out Elmiron. My uro doc didn't want to start me on both because then we wouldn't know which driug was actually helping. The Elavil hasn't given me any problems at 10 mgs and has lessened my symptoms to a very bearable degree. My main symptom was intense urethral sensations that were unbearable. I still notice then from time to time but I have only been on the Elavil for a short period of time. Haven't had to take pyridium or any other other pain reducer since starting the Elavil. Just hope it continues to work for me with no side effects rearing their ugly head.
    Hope your med works for you in getting rid of your symptoms.
    Thanks so much for your reply,

    Leave a comment:


  • cmclien
    replied
    Originally posted by fivefoottwo View Post
    . He also mentioned Elmiron, but that doesn't seem to have the good results the Elavil does. Still am skittish about my upping the dose. Not a bug issue with drowsiness on the 10 mgs, just dry mouth and constipation.
    Hi there, welcome to the forum!

    I just wanted to say not to rule out elmiron yet. Alot of people take elavil, elmiron and hydroxyzine together to deal with their symptoms. I started elmiron about 5 weeks ago and definitely can tell a difference. My doctor told me it works 40-50% of the time so if you are one it will work for then its probably worth trying but unfortunately you won't know until you try. Just keep it in the back of your mind. I can't take the tri-cyclics either, I had an allergic reaction to the nortriptyline and so my doc told me I can't take any of them now. Thats ok because pain isn't my main symptom.

    Leave a comment:


  • fivefoottwo
    replied
    five foot two

    Gee Earthlady, I am sorry to hear you cannot take Elavil. I am on a drug to control fast heart rate due to a condition called supra ventricular tachycardia. So far all is well.

    I did some searching on the PC and found numerous sites that said Mira-Lax was not habit forming. It has something to do with soluble and non-soluble laxatives. My sister takes it by script and she told me it was non habit forming but needed to find out for myself. I also feel if I can allow myself to reduce my stress level that will help a lot as well.

    Will be signing off for tonight. If you ever wish to speak directly, just let me know and I will forward you my email address.

    Have a good night.

    Leave a comment:


  • earthlady
    replied
    Elavil seems to help a lot of people. I wish I could take it but tricyclic meds give me a rapid heart rate and insomnia- which is the last thing I need right now. Sounds like you may do well on it- other than the constipation that is. You should ask your dr. about the Miralax and see if it's ok for you to take.

    Leave a comment:


  • fivefoottwo
    replied
    fivefoottwo

    Well, using it for my animals is a new one on me!! I have always had a problem with constipation. Lots of stress in my life and the addition of Elavil only worsened the problem. I am taking other meds that magnesium could have an effect on so I never had made use of those. Have had some symptoms today but am so relieved with the use of elavil. Hope the Atarax will do the same for you. When things seem down and out, the only way to go is up.

    Thanks again for your reply. If I can ever help you send me a message. I am ion NY so there may be a time difference not knowing where you are from.

    Leave a comment:


  • earthlady
    replied
    Miralax is a stool softner and not a laxative so it may not be addicting to the bowel. My cat and I both use it- Ha She is elderly now and has problems and it has been the best thing for her. It doesn't stimulate the bowels, but diverts water to the area and makes it easier to go. I don't have much of a problem right now, as the Gelnique I am using for bladder spasms and irritation doesn't constipate me. I will be starting Atarax though, so I will see what happens when I add that. Magnesium supplements help a lot with constipation in case you haven't tried that yet.

    Leave a comment:


  • fivefoottwo
    replied
    fivefoottwo

    HI Earthlady,
    Thanks for your reply. You are the first one I have heard from. Was beginning to wonder if anyone was ever on site. Still, haven't come up with a definitive idea on what to do about the constipation. Everyone talks about MiraLax but fear it can be addicting for the bowel. I have enough problems now without adding not being able to 'go' without help.

    If I am not being too forward, may I ask what you use for relief of symptoms and possibly constipation? My uro started me on Elavil as he said that was what he got the most success with in his IC patients. He also mentioned Elmiron, but that doesn't seem to have the good results the Elavil does. Still am skittish about my upping the dose. Not a bug issue with drowsiness on the 10 mgs, just dry mouth and constipation.

    Leave a comment:


  • earthlady
    replied
    Yes it is kind of odd isn't it? Feeling happy about a diagnosis for this condition. For me it seemed to open up a variety of treatment options that weren't available before. The anxiety of not knowing what's wrong with you and not knowing what to do for treatment is a killer. I think that's were the relief comes in when you're finally diagnosed.

    Leave a comment:


  • fivefoottwo
    replied
    Also just diagnosed

    Hello everyone! It will also be a week tomorrow that I was finally diagnosed with IC. There was a bit of confusion between me and my urologist. He kept testing me for things with negative results so I ended up going to my OB/GYN. Because my symptoms weren't typical for IC, (Mine were all urethral), he basically told me to go hone and quit thinking about it!!). That pushed me back for a fourth visit to my urologist and he said now that he had ruled everything out including a clear cystocopy, it had to be IC. I never knew you could have it without an inflamed bladder. Am presently taking Elavil 10 mg's once a day and it has given me some relief. Symptoms are much milder but the dry mouth is the pits!! I should start with 2 tabs in the evening tomorrow night but I am also constipated and the Elavil seems to be making it worse. I am a high panic/anxiety disorder person so I am sure that is not helping either. Am looking around the site now for ideas on helping with the constipation. Like all of you, it is nice to know we aren't losing our minds and all these symptoms are psychological!!

    Leave a comment:


  • VickiB
    replied
    The irony in feeling happiness after being diagnosed with incurable IC!

    I suppose we've all been there. I know for me there was such a sense of relief in the validation, -I was not crazy after all! And now I had something concrete that I could fight against.

    Discussed the Elmiron but not sure I'm ready yet.- if that makes any sense?
    You have to do what feels right to you. It sounds like you have a good doctor who is up to the challenge of treating IC and hopefully you will soon find a treatment that works for you!

    Vicki

    Leave a comment:


  • IndianaKaren
    replied
    I'm joining the IC Club

    I got my diagnosis this past Tuesday. As I walked out of the uro's office I felt a huge weight off my shoulders that FINALLY I found someone to help me and I was going to get relief. Now that reality has set in, I am a bit blue; knowing I will always have this condition; and having to give up my morning coffee and my Friday night glass of wine. I have to tell myself to look at the bigger picture -- this is not a fatal disease; it is a condition I have to learn to manage. I am so thrilled to find this site and know others understand!

    Leave a comment:


  • earthlady
    replied
    greengenes3- Thank you for sharing your information with us from a doctor's point of view. I guess this condition is confusing for everyone. It varies so much from person to person. The Urelle was too hard for me to take. It left such a bad taste in my mouth I couldn't eat. I'm always amazed at how different everyone is in what they can tolerate. I think I will refer my current dr. who is now treating me (and very well I have to add) to this site. It just might be very helpful for her to read patient's experiences with treatments.

    Leave a comment:


  • earthlady
    replied
    passion4life- Thanks, and you are right there are a lot of tools and educational info on this site. It's a Godsend for all of us.

    Leave a comment:


  • greengenes3
    replied
    I'm glad to hear that you finally got answers and some peace of mind of what is going on with you. I was just diagnosed with IC. I'm a family practice doctor and I was never trained on IC. Who knows how many people I missed? I knew something was wrong and felt helpless. I live in a smaller town and we actually have one group of urologists who don't even believe in IC!! And the other urologists don't have a clue either. It's the blind leading the blind. I was lucky that my gyn is a urogyn and that's her speciality. She didn't know until I had surgery for a sling and she decided to do the cystscope. I looked at the pictures in disbelief. I did a lot of reading since then. Ic is one complicated illness!! I have a few patients that I have already spotted who may have problems that I believe is IC. Unfortunately we can't know it all, medicine is complicated and never simple at times. I've learned a lot on this one site. I have had my share of recent illnesses that have made me a better and more understanding doctor. I make sure I take 30 minutes with patients who are complicated. The hospital doesn't like it but screw them. Poor doctors have to see patients every 5 minutes! How can you help someone in 5 minutes? It's crazy. I feel medicine was God's calling for me but there's no way I can know every illness and disease out there. I have to know when to refer out and pick the right doctor. Right now I'm working on the diet. I'm gluten sensitive, lactose and soy intolerant also. The first instill I went blindly into and won't make the same mistake again. It was awful. I'm drugged out on pain meds and Urelle. They are helping. Prelief has helped also. Doxycycline I just started and that's based on one study that it may help with my urethra. I feel like a guinea pig. I'm on more meds than my elderly parents. LOL My prayers are with you. Good Luck!!

    Gina

    Leave a comment:


  • passion4life
    replied
    Congratulations on your diagnosis!


    Now that you know, you will discover so many wonderful tools on this journey!


    Thanks for taking the time to share and have the best day you possibly can

    Leave a comment:

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