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  • Questions for Heparin Users

    Those of you doing Heparin Instills....

    1) When you first started them, how often did you have them done?
    2) How long before you noticed an improvement in symptoms?
    3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?

    4) If you have them done for "maintenance", how often do you get an instill?

    I'm trying to figure out if Heparin instills are only for temporary, quick relief, or if they give long-term relief if done often enough. Thanks for any info ladies!

  • #2
    Once a week at doc's office
    8 months (which he told me)
    2 day of relief
    once a week for I think 7 years now

    Only lidocaine added to it to help with the pain

    Comment


    • #3
      1) When you first started them, how often did you have them done?

      I started doing them myself at home, three times a week.

      2) How long before you noticed an improvement in symptoms?

      Immediately. The instill is really calming for my bladder.

      3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?

      I get anywhere from a few hours to a few days of relief from each instill...it just depends on how badly I'm flaring at the time.

      4) If you have them done for "maintenance", how often do you get an instill?

      I do them once a week now, in general. More, if I'm flaring.

      My instills are made up of heparin, lidocaine, and sodium bicarbonate.

      Hope this helps.
      ****
      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


      • #4
        When did I first start them? 2004

        How long to see improvement? Instantly

        How long does effect last? From a couple of days to up to a week, sometimes longer

        Maintenance: My instills are PRN

        I started out with 3 a week. Then I had to increase at one point everyday. Now I just look for signs and do an instill then. My OS said that I might need to always have them or I might eventually just need maintenance instill every 2-3 months.

        It really doesn’t matter to me. I have no problems when I do the instill PRN
        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


        • #5
          1) When you first started them, how often did you have them done?
          3x a week
          2) How long before you noticed an improvement in symptoms?
          Right away, I knew they were helping. Though we did have to make some adjustments (marcaine instead of lidocaine, non-latex caths instead of red ones)
          3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?
          I have entire good days now. Before the home instills, I never had an entire pain free day.

          4) If you have them done for "maintenance", how often do you get an instill?
          I now do the instillations 3x a week up to daily. Depends on how I am feeling. Most weeks it's 3-5x a week.
          Kadi

          -------------------------------------------------------------
          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
          Source - Pinterest
          "


          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!

          Comment


          • #6
            HI! I tried to private message you back but system said you can't receive private messages any longer (?)
            It was nice hearing from you. Give me a yell if you ever visit your brother down here. 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:

            Comment


            • #7
              I've been noticing everyone had their heparin instills done 3x a week in the beginning. Mine were only once a week. Could that be why it took 8 months to get results??????????????? I'm really wondering about that now.

              Comment


              • #8
                Originally posted by waterflow
                I've been noticing everyone had their heparin instills done 3x a week in the beginning. Mine were only once a week. Could that be why it took 8 months to get results??????????????? I'm really wondering about that now.
                Roxi, I changed my email address, and evidently that caused some problems, but I think I'm back online now! You can PM me if you like.

                Waterflow, did you have Heparin once a week for 8 months straight? I've only had one instill, and my doc says he'll do it once a MONTH! Is that way too long inbetween? I'm not sure I can afford to go once a week. Those of you experienced with Heparin, am I wasting my time and $$ by getting the instills too infrequently?

                Comment


                • #9
                  I have been having the heparin instills once a week straight for the 7 years. It took 8 months before I noticed it helped. I am now trying to do it myself once a day at home.

                  Comment


                  • #10
                    question about msm gel

                    Hi Roxie - When you say that the MSM gel works for the urethra do you mean that you put some on and it somehow works its way inside to relieve that bad feeling? Thanks, PV
                    I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                    Comment


                    • #11
                      HI Purpleviolet,
                      Yes I put a small amount around the urethra and since it's a gel it works it's way around the area. MSM is Methylsulfonylmethane an organic sulfur compound. It has worked wonders for me. I've had IC for over 25 yrs and the awful urethra pain for the past 3 yrs. I started using the MSM gel 2 1/2 weeks ago and now I haven't had urethra pain in 2 weeks and no ic flares! It's amazing stuff! 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:

                      Comment


                      • #12
                        Thanks Roxie

                        Thanks for the info. I saw some advertised on the internet. I think Jacobs. Is that what you use? PV
                        I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                        Comment


                        • #13
                          Those of you doing Heparin Instills....

                          1) When you first started them, how often did you have them done? about 3 times a week
                          2) How long before you noticed an improvement in symptoms? after about the 3rd one.
                          3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief? For me, I only get about 3 hours of relief. (But my main symptom is daily pain, not freq/urg, like most ICers.) But, when I am flaring, that is when I have freq/urg too. When, I DO have freq/urg, the instills help reduce those symptoms for a couple of days.

                          4) If you have them done for "maintenance", how often do you get an instill?
                          Since my case is severe, and I get such great relief from them, we have always done them about 3 times a week. However, initially, my Dr. told me if I got better, we could go to about once every 3 weeks for maintenance, but we never got to that stage, since my pain is always there. (The instills bring it down alot for several hours, but they still dont take it away.)

                          Comment


                          • #14
                            Originally posted by Paininthe*.* View Post
                            I've only had one instill, and my doc says he'll do it once a MONTH! Is that way too long inbetween? I'm not sure I can afford to go once a week. Those of you experienced with Heparin, am I wasting my time and $$ by getting the instills too infrequently?
                            I am not really sure why your Dr. is choosing to do them so infrequently. But, if they help you, and money is the issue, you might want to ask if he/she would consider teaching you how to self cath and letting you do them at home.

                            I just know that they help me alot. It isnt the only pain mgmt too I have, but it is definately a very important one for me. (I'd do them several times a day, if my Dr. would let me!) As it is, he will allow me to do them once a day, but I usually have to do them every other day, or else my urethrea gets too irritated.) But, if they help you, I'd definately ask if you can have them more often.

                            I do know that my Dr. normally only does them for people once a week. He sets aside one day, and that's all he does that day. But, since they helped me so much, he had his nurse do them for me 2 additonal days per week, when he was unavailable. (That was before I learned to self-cath and started doing them at home.) So, maybe this varies from Dr. to Dr. I just dont know. But, if it helps you, I'd definately talk to your Dr. about increasing them.

                            Hugs,
                            Amy

                            Comment


                            • #15
                              Ihurttoo:

                              Thanks for the info. I am so sorry for your pain, you must have IC very badly. I wish you the best and pray that you can find relief soon for this awful disease. Bless you for sharing your story with us.

                              I'll find out about self-instills. Doctors here in Nebraska are not awfully progressive, but my urologist seems to be open to trying things, so I'll see what he says. The last instill I had seemed to give relief for about a week. That's not very long, but maybe with repeated treatments, that period gets longer.

                              Comment

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