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  • Help me with my Concern

    Hello this is Lori I have been having a hard time figuring how how to get with you all so I can find some answers to what I can do to help me out here, I am hopefully going to have insurance again in Aug. does anyone have any suggestion to what I should be asking I am doing ok for the most part with azo, but when it comes closer to my period it gets so very bad, do you or anyone have any idea's of what I could try Elmorion is ok but the really don't like the side effects and I hate being up all night going to the bathroom for a tinkle that is so fusterating. Does anyone have an idea whatsoever? I need to try something and with no insurance it is hard for me to get the expensive perscribions. Please help me out if you guys can! Some of you have been here much longer than I have and I have started work again and I can't stop to go to the bathroom ever 15 min or less. Thanks!

    Lori

  • #2
    HI Lori,
    Have you tried Elavil? It helps tremendously with frequency and urgency.
    Freeze Dried Aloe Vera helps to coat the bladder and rebuild the lining......and you can buy it through this site.
    I know how difficult it is to get up several times a night to run to the bathroom.....I did it for years myself! Good luck! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

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    • #3
      I am so sorry that you are having such a hard time. Amitriptylene (geneic for Elavil) is really inexpensive and helped me a lot with frequency. Could you possibly get a doctor to call you some in to see if it would work? Hope you feel better soon!

      Janice

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      • #4
        What about birth control? I have no idea how much they cost? Taking BC decreased the amount of pain I was in before and during my period. (instead of 5 days before and the 5-6 of my period it went down to 2-3 days before and 3-4 days after) At least that's something.

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        • #5
          Lori,

          This may be helpful: http://www.ic-network.com/drugassistance/

          Wishing you better days ahead.

          Kara
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:
          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

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          • #6
            You could also talk with your doctor's office about maybe giving you drug samples.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            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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            • #7
              HI everyone thanks for you replies, I am hoping to get back on my feet with these suggestion. I do not like to have to pay so much for perscribions. This will help me I will be looking at the sight today and give some of these things a try. I want to start getting better sleep at night instead of being in the bathroom so much. I hope all is well and thanks so very much.

              Lori

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              • #8
                I would suggest samples from your doctors. I know even with insurance our copays for mine and my husbands are too expensive. If it wasn't for the cardio and my husbands PCP, we wouldn't make it. (everytime I go in for my Coumadin check) I ask the nurses for samples for my husbands meds-- in the 2 years that he has been on his- I think I had to pay once for each of his medications!) other than that, all I do is ask.) Sometimes they might have some samples of mine but if not, at least they help with his..

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                • #9
                  Drug assistants

                  I will certainly try to see if my doctor will give me samples, but I can't to the assistant program I make too much money! That is what they said the last time I tried and since I am working again, I dought I would even get in. I think Dr. Malanore will do this for me I really have great respect for him, he is a great doctor. If I get really bad I use AZO and bakeing soda with water and that seems to help some:woohoo: but I know that I need to take something on a regular basic to keep it from getting to bad, with my Lumbar Spinal Stenosis it is not a good thing one will act up then flairs up the IC or vise versa, so I try to be careful with what I do and I know extersizing can help as well, but I have not yet come across and extersize program to help with both how do you do the extersizes for pelvic floors anyway? I know someone has the answers to that one! I also know I need to lose 25 pounds and I have not been good at that, but I know I am going to start losing with this job is so demanding and so hot up there all the time, I am cleaning rooms for Labor and Delivery so it is fun to see all the babies, but I work my but off. Anyway I hope all you ladies are doing well!

                  prayers and praises to everyone!
                  Lori

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                  • #10
                    elavil side effect: gain weight

                    Hello,

                    Just thought I would tell you what I went through with elavil. Yes, it did the job as far as treatment but I continuously gained weight, which I did not need 1 extra pound. So the doc changed this to Pamelor which so far has been ok. I haven't had any weight gain from this med either. I hope you find something that helps you.

                    IC friend--
                    Rachel

                    Dx'd Pelvic Pain Syndrome 2003
                    Dx'd IC Jan. 2003
                    Dx'd Fibromyalgia 2003
                    Dx'd IBS 2003
                    Polycystic Ovary Syndrome since teen
                    Dx'd Vulvodynia 2005
                    Dx'd Vulvar Vestibulitis 2005
                    Lymphedema in legs, pelvic area, feet and hands
                    Severe Anxiety Disorder since teen
                    Major Depression since teen
                    No periphreal vision, found @ very young age

                    Current Meds:

                    Oxycontin 80mg x 4 per day
                    Lortab 10 x 5 per day
                    Xanax 4mg per day
                    Soma 350mg 2 x per day
                    Pamelor 50mg at night for sleep
                    Phenergan 25mg as needed
                    Prelief
                    Bisacodyl 5mg 2-3 tablets at night for IBS
                    Effexor XR 75mg x 1 a day
                    Lasix 40mg x 2 per day--for Lymphedema/swelling
                    Lidocaine 5% gel as needed for VV & Vulvodynia
                    Lidocaine 5% patches

                    *On disability since Jan. 2007. I was approved after appealing for almost 4 years. My current doctor was an angel in helping me get through this process. It was a nightmare to pay for meds before I rec'vd insurance through Medicare. Thank God for answered prayers and guidance.

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                    • #11
                      You might try this website. When, I had a friend that used it, there was a person to speak with on the telephone. Each drug company has different requirements, even if you are making money tell them your story and see if they will make an exception.

                      https://www.rxhope.com/home.asp

                      I had a ruff medical bill year, and my durable medical equipment company which sells me expensive supplies every month to keep the equipment working, made an exception for paying my bill. A bill clerk brough it up, and I said, No I make $..... and it is too much. Guess, what they looked at my total medical expense burden versus my income, not just at my income alone.

                      It doesn't hurt to tell your story. You are a hard working person and who needs meds and can't afford them.

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                      • #12
                        This is good timing for resources. My hubby recently lost his job and we are surviving with no prescription coverage. I filled everything I could before our insurance ran out, but I"m dealing with refilling others this week. Ditropan helps me a lot, but even the generic is pricey - especially with finances being so tight right now.

                        I do know my gyno has given me samples in the past for BC pills, so I'm going to go call about that. Since Ditropan is generic, there are no more samples for it and the other meds like it don't help me. Bummer. Fortunately, I was able to refill my ELmiron and it should actually last me about nine more months. Hopefully we'll have new insurance by then. It's all so frustratingly expensive!
                        ~ Stacey

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                        • #13
                          Stacey,

                          Maybe until you get insurance you could go to rxhope.com and see if you could get meds assistance fromt he drug companies. They have programs for people, you fill out an application usually signed by your doc, if approved then they ship the meds to your doctors office. There is also a section regarding assistance on this message board and think someone put some information up on the ICN website. Being without insurance can really be expensive, even if it is for a short period. I hope you don't have to go off you meds. Maybe if you can nip it in the bud now while you have a supply, then you could get approved under one of the drug companies' programs.

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