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Questions about Meds and Why.....

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  • Questions about Meds and Why.....

    I am newly diagnosed and still suffering a great deal, although I am better than I was at the beginning (almost 5 months ago), thanks to the IC diet and a couple of meds (antihistamine and Zoloft). However, I was wondering a couple of things, since I am a nurse, and I have to make things make sense.
    1. If severe inflammation is the underlying problem, during a flare, why don't they use steroids (Prednisone, prednisolone), i.e. the "big guns" instead of recommending that we try NSAIDS (naproxen, ibuprofen)? Obviously, steroids have some potential bad side effects, but many other patients use them for years for relief of R.A., etc.
    2. Also, in my reading of the literature, I noted that it says that Irritable Bowel Syndrome is common in I.C. patients. Does anyone out there take Amitaza/lubiprostone or have you tried it in the past (med for IBS)? Did it help or hurt your symptoms of I.C. ?
    3. I keep reading about people using heating pads for relief. I cannot imagine, as heat would be the last thing I would do for myself. My urine feels like it is about 140 degrees Farenheit when I urinate, and the vulva are inflamed and hot as well (no infection is present). I use cold wet compresses applied to the area for some I the only one using cold instead of heat? Interested in hearing answers from all of you. Thanks!

  • #2
    I'll try to answer your questions --- I'm definitely not a doctor.

    1. Many of us have a problem with NSAIDS --- I know they will cause me a flare. I have had solu cortef used in instillations. When I had a severe allergic reaction I was on oral prednisone --- it did nothing for my IC, but I puffed up like a balloon until I was able to wean away from it.

    2. I can't actually respond to this question because I don't have IBS even after 36 years with IC.

    3. Some ICers are helped by heat, some by cold. In warm weather, I prefer cold. I keep a package of frozen peas in my freezer to use as an ice pack. I just slip it into a cloth bag and have a great ice pack.

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    • #3
      When I first got IC, I used cold packs for relief and heat made it worse. But later on, cold started to not help and heat became much better for relieving my pain. I don't know why.

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
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      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!


      • #4
        Question about meds

        I have IBS but have not used the medicine you mentioned. Actually, I would like to know more about it!

        For me, cold works for my genital area, and heat works on my abdomen. So, depending on what's bothering me most, I use one or the other, sometimes both at the same time.

        Sorry, I don't know the answer re steroids, though it seems, in going back to the far reaches of what's left of my mind, that one of my doctors once told me why steroids are not good. I think I'll google search that and see if I can find an answer.

        I'm glad that you're feeling a little better and hope you continue to improve.


        • #5
          I use a heating pad but when my lady bits are irritated I take a bottle of froozen water, put the bottle in a sock and hold between my legs.

          When things are bad my Dr. does put me on Prednisone, for a few days at a time, I don't like this stuff, it does help make me feel better, and he uses various does depending how sick I am, I don't like how it makes me feel and would not want to be on it all the time.

          I have IBS but have not tried any IBS meds.

          My are with you all. May you all find a way to peace and joy in your lives.


          • #6
            I used moist heat when my pelvic floor and bladder were spasming and cramping. It helped calm the spasms. I used ice when I had the burning searing pain that felt hot. Sometimes I had a heating pad under me in bed and an ice pack on top of the pelvic and pubic area. Sounds crazy when I see it written. Dang, what we go through! I'm one who can tolerate ibuprofen, so I think this helped me with the inflammation along with the Quercitin I was taking. Good question though as to why short term steroids aren't used more often, as you would think this would get the inflammation down pretty quickly.


            • #7

              I go to pain management and for about one year my Doctor used steroids with my nerve block (which no longer works). It will really make you gain weight and it takes a while to get it out of your body before the weight comes off.

              I use the heating pad on my lower back, I believe it calms the spams and the ice pack between my legs to help control the burning. I have had IC for 8 years.
              Hope this helps!!


              • #8
                My worst symptom is urethral buring, so its 'cold' comfort for me. I sleep with ice packs virtually every night and have been doing so for years.


                • #9
                  My IC is mostly allergy/inflammation caused. Sometimes I will have a tiny flare for a day from acidic food, but mostly it is inflammation from outside allergens or bad ozone days. When I flare, I can check the ozone and allergy report for where I live and it totally correlates to my awful, painful symptoms. So, keeping the inflammation down is key. My doc says to stay on top of the pain aggressively at the beginning so you have a chance to "break the pain cycle". Antihistamines are VERY important for me.

                  I always take Singular (for ashtma) and Zyrtec (antihistamine) at night. But when I am flaring I will take an additional antihistamine in the morning as well, usually Vistiril (Hydroxyzine) or even Claritin. I know it sounds like antihistamine overload, but it helps a lot.

                  Also - when I am flaring I have some 5% lidocaine that I use and I will use an ice pack. It really helps. A heating pad would kill me.


                  • #10
                    One time I was on hydroxizine 25 mgs at night, I had an allergic reaction and had to take 2 benadryl, then I was feeling really sick to my stomach, but I was afraid to take gravol because I know it is an antihistamine as well. Later I was telling a Dr. about this, so I would know what to do if it happened again and he asked why was I afraid to take the gravol and I said I didn't know how much antihistamine was safe to take, he laughed and said you are not going to OD on antihistamines.

                    My are with you all. May you all find a way to peace and joy in your lives.


                    • #11
                      re: Question about meds and why...

                      Thank you all for sharing and the information. This forum is very helpful. I plan to ask my MD next time I see him about the steroids. I don't get any side effects from predisone or prednisolone, as I have used them in the past for really bad bronchitis after a respiratory infection. I know it is not a long term possibility, but it sure seems logical that a short term regimen might help some of the severe pain. When I find out any more info, I will post it. I am still battling my way through my initial symptoms, but it has improved enough that I am now only in pain 50 % of the time, so I am making headway. thanks again to everyone.