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Heparin or Elmiron

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  • sully02
    replied
    elmiron

    Sharyn,
    Did you think the elmiron helped? I am looking for something that will make it go away to the point that IC is not running my life. I take prosed DS and really think it helps a lot. It is another drug that is expensive for me but I think it helps with the pain and burning enough that I always get it. My problem is I have to pay for prescriptions up front and deal with the insurance company to get it back which can be difficult and time consuming sometimes. Elmiron costs over $300 a month plus the side effects,I am on the fence about trying it since it takes so long before you know if it works.
    I will check out Axo. Is that the same as ASO? Thanks for your reply.

    Do you know how to post a new thread? I feel so dumb but can't seem to find that or if there is a spell check on this site.

    sully

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  • Sharyn
    replied
    When I was first diagnosed I used
    Elmion. I have been having Heparin Installis at the doc's office and was doing fine. Lately, I have had a flare. I am using AXO (over the counter). Drugstore .com has it in larger amounts. I am also going to discuss Prosted/DS (tht is a rx). Check out the video on this web site for managing pain. Jill does a great job on a video. Hope this helps.

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  • sully02
    replied
    Elimiron

    I am posting this here because I can not find out how to start a new thread........DUH? Can someone help me please?

    I would like to know of the people that have tried elmiron if they think it works. Even with my insurance it is still very expensive for me so I would like a survey of those who use it please. Also I am interested in Desert Harvest Aloe Vera. I have used it also and think it helped but since I had to quit working because of IC, I only have a small amount of money to use for treatments. Should I buy elmiron or aloe vera?? I was dx with IC 10/08 and at my wits end trying to end the pain.

    Thanks to anyone that replies.

    Sully

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  • curlycue
    replied
    instills

    Hi ladies I have been doing the Heparin lidocaine sodium barcarboinate and for about 2 months I have noticed its really not helping me sooooo I was thinking to my self what if I use elmiron instead? has any one tried it and if how would I use it? HELP

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  • Sharyn
    replied
    Correction

    That's Prosed/DS. Some like it.

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  • Sharyn
    replied
    I was having heparin and it stopped working within the last 3 mos.
    I am now looking for some of the new meds that have been used. USO is over the counter and I have been trying that. Prosted DS was suggested. My doc has to prescribe it for me. I will give the office a call on Monday. Also Cystoprotek - never used it. Glucosimine is also being discussed. I wish I had a crystal ball...

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  • Sharyn
    replied
    I had been having Heparin instills for about 3 years and it was working very well. Just within the last 6 mos it stopped. My nurse suggested Elmiron, but the cost is so high. I haven't used any other drugs for IC, maybe I will have to start again.

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  • L. Thomas
    replied
    Heparin was in short supply a year or so ago but that is not a problem now. During the shortage Elmiron was substituted in my instills. It was not effective in controlling my symptoms. Dr. Dell said I wasn't the first person to tell him Elmiron was not effect in the instills. Heparin is a generic drug but there are also brand name "heparin". I think I would check with the insurance about the coverage.

    I have been doing instills for several years without problems. Dr. Dell encourages me to post on this forum to keep people informed about instills. He is a board certified Urogynecological Surgeon and limits his practice to pelvic surgery and treatment of IC. He has done extensive research with the leading IC specitalist in the US. He conducted a research study concerning the effectiveness of using Elmiron.(for the manufacture of Elmiron). He thinks Elmiron looks promising but there is not enough empirical evidence to say it is the "cure-all" treatment.

    If you have any questions about the actual procedure for doing an instill please let me know. I don't have all the answers but I may have some suggestions.

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  • sailawaygrl
    replied
    I use two, but I take 400mg a day so what I use is the equivalent of one of my daily doses.

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  • needsrelief
    replied
    thanks do you use 3 elmiron pills in your instill? or one?

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  • sailawaygrl
    replied
    As far as cost of heparin for instills this is the experience I have had. When I still worked and had my own insurance I paid $4 for one month's worth of heparin for my instills daily. After I had to stop working and went onto my husbands insurance I ordered my monthly heparin, with his company I had to get it mail order and they didn't tell me how much it would cost. It was $600!! yep, that is 2 zeros! I about had a heart attack! So, I told my Dr and we changed mine to elmiron. I really didn't notice a difference in the effectiveness. I have found that I like using my elmiron that way as I think I get a better benefit because all of it gets to my bladder. You have a very good elmiron co-pay so maybe the heparin will be good as well. I just can't see how an insurance company can justify $600 for something I was paying $4!

    Try not to stress over doing home instills. Many of us love the fact that we have the ability to do them ourselves. I know mine have saved me more than once during a flare. If you need any tips on doing them yourself search for a post by L. Thomas, her directions are what I used to teach me how to do mine. The nurse at my Dr's office didn't show me anything. (this was my old Dr, not the one I see now)

    Best wishes to you,
    Sandra

    Leave a comment:


  • needsrelief
    started a topic Heparin or Elmiron

    Heparin or Elmiron

    Im suppose to pick up my prescription this week so that I can do rescue instills at home. Never wanted to do this but its gotten to that point. The new uro Im seeing doesnt seem to be an expert at IC but knows what it is. I think he wanted to give me a cocktail simillar to doctor parsons (heparin, lidocaine, sodium bicarbonate, sterile water). but instead of heparin he wants me to use elmiron. The instill he tried on me had heparin but he said its hard to find so for my instills I would be using elmiron. I was wondering if heparin is better and is it less expensive then elmiron. elmiron was costing my insurance company about $400 a month and I had a $20 co pay. Im sure I have a prescriptions cap for the year and I take other meds. so I thought it would be better to have heparin. what if he doesnt give it to me? we only have 3 uros in this small city and I believe he is the only one who treats IC.
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