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Male...newly diagnosed, need feedback

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  • some_guy
    replied
    Hi Toby,

    Sorry you have this but glad you found this forum right away as it will help you in many ways.

    It sounds like you got a pretty quick diagnoses indicating your doctors are on the ball and hopefully that will workout good for you in finding a combination that works well for you quickly.

    Again welcome and keep in mind this place is always open.

    Mike

    Leave a comment:


  • KarenAnne
    replied
    Since Kadi's advice is the best, I will just say welcome & good luck!! I take 20mg. of the ami & it has helped me dramatically. 10 mg. helped a little & 30 mg. was too sedating. 20 is my perfect dose. We are all so different.

    Leave a comment:


  • Linda May
    replied
    Ic

    Everyone is different when it comes to treatment for IC. Some people can stick with the diet and be fine while others need a more indepth treatment.
    I started having alot of UTIs before being diagnosed with IC. I went for 3 months of agonizing pain before I found the right urologist to treat my IC.
    I had to have DMSO treatments for 6 weeks after that I was pain free for a month. I did a big no no and drank 2 cups of coffee for two days and it set me into a mild flare. A mild flare to me is the feeling of pressure to urinate all the time. I am back on DMSO treatments again, I have tree more to go, for the last couple of days I have noticed improvement. I am hoping and praying that after I receive my final DMSO treatment I will not have another flare, but there is no cure so far. I hope and pray that someday real soon that they find a cure or magic pill that takes all the symtoms away. I wish you the best of luck, and if you need a second opinion go to another urologist.take care

    Leave a comment:


  • Toby1
    replied
    Thanks Kadi for the feedback. Very helpful, I'll give the meds another week before I call the uro.

    Does anyone know if amitriptyline helps with urgency as well as pain? I'm hoping so because the urgency is much worse than the pain, at least mentally.

    I've been trying loratadine(claritin) based on Internet readings. I think it may be slightly helping with the urgency but it may just be in my head. Has anyone had any luck with claritin or any other antihistamines? When I asked my uro about the claritin, he said to stop taking it because it can cause urinary retention. However, I believe he thought I was on claritin-d.

    As always, I welcome any feedback. It's nice to get information from others who are dealing with this.

    Also, I'd love to get some feedback regarding duration. My symptoms started about a month ago for the first time. Is this something that goes away after treatment or is it long-term? I seem to get conflicting viewpoints on this.

    Leave a comment:


  • kadi
    replied
    Hi Toby,
    Welcome to the ICN!
    Amitryptiline can take up to several weeks to work or it can help immediately. 10mg is a really low dose. If you don't get relief with 10mg, some patients gradually increase up to 50-75mg. But the lowest dose is usually started first due to side effects of weight gain & sleepiness.

    Usually it takes a month of strictly following the diet without cheating and with careful label reading to avoid accidentally eating acidic preservatives, to find relief. A trigger food can cause a flare from a half hour after eating up to a day later. A food induced flare can be just burning &/or urgency & frequency.

    For me, the diet helps, but I need other treatments too. So, since I still had symptoms when I first tried the diet, I thought it didn't work. But the first time I tried a cup of weak decaf black tea, my symptom level shot up so fast, I realized it had been helping after all. Now, though I take other meds, I still follow the diet because the meds don't work if I'm eating trigger foods.

    Welcome to the ICN. Feel free to come here with any questions or just to talk.
    Wishing you better days soon,

    Leave a comment:


  • Toby1
    started a topic Male...newly diagnosed, need feedback

    Male...newly diagnosed, need feedback

    35 yr old male recently diagnosed with IC/CPPS....need some feedback. After multiple family dr visits and three different antibiotics, i was referred to urologist. Urologist had me follow strict diet for two weeks. I Followed completely with no change. On my most recent visit, he started me on 10mg of amitriptyline. A few questions....

    1. How long does it usually take for the amitriptyline to start working? Has anyone had any experience with this? If so, did it take care of the pain and urinary urgency or just pain? I'm on my fourth day with no noticeable relief(yes, i'm being impatient)I've also noticed once I started taking meds, I started having mild bladder spasms. Anyone else notice this? I read claritin could help with urgency so I've continued taking that as well. Has anyone had any luck with that?

    2. What is the usual time interval to know if a food will cause a flare? Minutes/hours/days? Is a flare up only pain/burning or is urgency part of that as well.

    Thanks in advance for any feedback. Before last month, I never even knew of this condition. Now, i'm totally consumed by it. For reference, I have nagging pain from urethra to perineum along with constant urinary urgency.

    Thanks again, I feel so blessed to have found this site.
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