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  • Praise!!!

    Hi Friends,

    Just to let you know, even though it took FOREVER and a day (a whole nerve racking day) to get the medicines from the pharmacy and mix them after a mini-training.

    I FINALLY got TriCare to cover the Heparin which is the most expensive part. I think 6 doses of Heparin would have been $245 without insurance. Geez...how do people afford this stuff?

    My husband and I did my first instillation tonight. I felt instant relief, but I think over several days it will eventually help more and more and perhaps reduce. I'm resting at home and only going to my primary care provider tomorrow...otherwise, sleep!

    On another note, does anyone know if they believe in pain management in Germany? If not, **laughs**, maybe I can just make a periodic visit to Holland for some special brownies...

    Hugs,
    April
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

  • #2
    YIPPEE!!! So glad you got some relief and that the insurance is helping you out!! I hope you are able to get a lot of rest!

    So, are ya'll headed to Germany?

    Comment


    • #3
      Possibly. It depends on if my husband gets into a school next year that is in MD or if not, we're putting Ramstein and our first choice for AFB's. It'd be kinda cool to live over there for a couple years AS long as they can take care of my medical needs...and my husband feels the same way, too.

      Take Care and have a great day!
      April
      Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

      Comment


      • #4
        I'm glad the rescue instillations helped you!
        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. 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.

        Comment


        • #5
          So glad the instills are helping and that your insurance company decided to cooperate as well!

          ~Claudia

          "A heart is not judged by how much you love; but by how much you are loved by others."
          ~ The Wizard of Oz

          "If I ever go looking for my heart's desire again, I won't look any further than my own
          back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


          Comment


          • #6
            Yeah......glad you have gotten some relief and your insurance company is doing the right thing :woohoo:
            Miss Bessie

            Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

            Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

            Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

            Comment


            • #7
              April,
              I saw in another post that mamacox6977 is in Germany as her husband is stationed there. She commented that she had not been able to find a good uro there yet. (It's in the Help! I'm in a Flare section). Maybe you should PM her about the docs/ meds in Germany. Good luck!

              ~Claudia

              "A heart is not judged by how much you love; but by how much you are loved by others."
              ~ The Wizard of Oz

              "If I ever go looking for my heart's desire again, I won't look any further than my own
              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


              Comment


              • #8
                That's great, April!
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn
                ___________________________________________________

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                On the Beach with IC

                Comment


                • #9
                  Originally posted by topcop229
                  April,
                  I saw in another post that mamacox6977 is in Germany as her husband is stationed there. She commented that she had not been able to find a good uro there yet. (It's in the Help! I'm in a Flare section). Maybe you should PM her about the docs/ meds in Germany. Good luck!
                  Thanks. I will do that. I really appreciate the information. Also, thank you all for your support. My husband is helping me do another instill at home tonight when gets here. Just also wondering, I think it's different for everyone and the doctor told me I could do them everyday if needed, but what's an average of how often I am going to need them. Today I can definitely tell a difference in my pain. It's in my hips and top of legs, but the bladder IS NOT spasming and no pain there today...or retention! YAY!
                  Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                  Comment


                  • #10
                    Really happy that the medicine is helping you and the relief that the insurance is paying for it. The cost of medicine is so high and there is no way to pay without insurance or some kind of help. Glad you are not under that burden now.

                    Hugs, Trishann

                    Comment


                    • #11
                      Originally posted by Trishann
                      Really happy that the medicine is helping you and the relief that the insurance is paying for it. The cost of medicine is so high and there is no way to pay without insurance or some kind of help. Glad you are not under that burden now.

                      Hugs, Trishann
                      Yes, insurance is a blessing. Also, the pharmacist we found who knew how to mix it because his daughter has IC was also a blessing. All the other compound pharmacies were saying they did not carry the heparin in 4000ml vials. Well, apparently it does not come that way...only in 2000ml and this pharmacist called and had the niceness to ask the doctor if he could just give me twice as much. By the time I found out SOMEONE was working out a way to mix the medication *he taught us how to mix it*** I had been shaking and my BP was 240/98...with pain meds...so I was a nervous wreck to say the least. Anyway, the insurance paid for the heparin which was most expensive and for 25 doses it was about $50 because we had to pay for the Lidocaine. So, a blessing this was!!!!
                      Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                      Comment


                      • #12
                        I have been doing home instills since 2004. I started with 3 a week and had to increase to one a day for a while. Then every other day. On the average I would say every three to 5 days now.

                        I coumpound the meds at home. PM me if you have anything I can help with.
                        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                        I post to encourage and offer total support for rescue instillations.
                        Find me on facebook: L. Clark Thomas
                        Louann

                        Comment


                        • #13
                          My insurance wouldnt cover my home instills either. I have appealed, but havent heard back from them yet. However, mine are much less expensive than yours. Mine cost about $3 per instill. I do save money by sterilizing and and reusing my caths. However, if my insurance company decides to cover them, I will start using a new one each time, just to be safe, since I am pretty prone to infections.

                          Right now I take a low dose of Macrobid daily to ward off the infections and that has worked very well. (I have only had one or two since I started the Macrobid, but before that, I had 10 last year alone.)

                          My Dr. prescribed my instills every day, but I do them approx every other day, since doing them daily was too irritating to my urethra. But, I do get alot of relief from the instills. More often than not, I get relief instantly. (It just doesnt last long enough. )

                          If you do end up moving to Germany, I hope you find a kind Dr. who is knowledgable about IC and compassionate.

                          Hugs,
                          Amy

                          Comment


                          • #14
                            Thanks Amy. I hope your insurance company covers this eventually. Most insurance companies cover IBS meds...why not IC meds? I guarantee it'd be cheaper for them to cover the home instills than to pay for a urology visit everytime. Just a thought.
                            Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                            Comment


                            • #15
                              My insurance company doesn't cover home instillations, but they are willing to cover the greater expense of instills in my doctor's office.


                              Donna
                              Stay safe


                              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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                              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.
                              [3MG]

                              Anyone who says something is foolproof hasn't met a determined fool

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