Announcement

Collapse
No announcement yet.

LiRIS

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Liris

    Hey,

    I am new the this section of the forum, But I am more excited that ever! I go for my first appointment on April 13th! I have been with out a instill since Feb 15th. I normally rely on them, So I am hurting quite a bit, and I have been hardly sleeping and pushing through! But I am traveling From North idaho to seattle to do my study which is 6 hours away. I am soo excited to start. I want to have hope that this works.

    I have questions like if it works, then will i get to keep the pretzel in after the study? Does it hurt? Is there as much pain and urgency?

    At this point I am willing to try anything!

    My doctor here is getting the study and will be available to do the study in may, But honestly I dont know if i can wait to more weeks. I just wanna start NOW!

    Any recommendations or advice from those on it?


    THanks.
    ~Backwoods gurl
    22 year old Female just trying to feel a little "better" each day!
    Diaganosed with IC possibly in July 11-
    Actually diaganosed with it in September 11
    Frequency- 15-20x's a day
    Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
    Good days are short frequencys and maybe 3-5 flares- but rare.
    What im currently taking:
    ~
    Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
    elmiron 100mg 3x's a day
    Tramadol 4x's a day
    hydroxyzine- when needed to sleep
    Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
    Tri- Nessa Birth controll pills
    Pryidum three times a day for one or two days then not for 3 or 4 days at all.
    ~
    Strict IC diet... I am diet senitive.
    ~
    Heating pad/ blankets
    ~
    Hot baths... Normally every night and showers in am
    ~
    frozen peas for a ice pack - will be doing often cuz it helps!
    ~
    Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

    Comment


    • #17
      Thanks so much for doing this!

      Comment


      • #18
        LiRIS

        Backwoods girl.

        Good luck. I am four weeks in.The pretzel has been out for two weeks. I am now being monitored for pain, urgency. I will find out in less then two weeks if I had the placebo or the lidocaine.


        I really didn't have too much discomfort and i feel that whatever I have, the urgency is much better. I don't have much pain at all in the bladder.

        JP

        Comment


        • #19
          Originally posted by jp View Post
          Backwoods girl.

          Good luck. I am four weeks in.The pretzel has been out for two weeks. I am now being monitored for pain, urgency. I will find out in less then two weeks if I had the placebo or the lidocaine.


          I really didn't have too much discomfort and i feel that whatever I have, the urgency is much better. I don't have much pain at all in the bladder.

          JP
          Jp! thanks for the response. So when you go for the first visit, and the blood work, why is that you wait two weeks to start? Is there anything I should expect going in to this? I am only hoping to feel somewhat better going in to this, at the very least no more pain than im in.

          I do have to say, im scared. I will be going to a DR I have never met before, and 6 hours away. So again... I am hoping this works.

          thanks for the info!

          Backwoodsgurl
          ~Backwoods gurl
          22 year old Female just trying to feel a little "better" each day!
          Diaganosed with IC possibly in July 11-
          Actually diaganosed with it in September 11
          Frequency- 15-20x's a day
          Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
          Good days are short frequencys and maybe 3-5 flares- but rare.
          What im currently taking:
          ~
          Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
          elmiron 100mg 3x's a day
          Tramadol 4x's a day
          hydroxyzine- when needed to sleep
          Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
          Tri- Nessa Birth controll pills
          Pryidum three times a day for one or two days then not for 3 or 4 days at all.
          ~
          Strict IC diet... I am diet senitive.
          ~
          Heating pad/ blankets
          ~
          Hot baths... Normally every night and showers in am
          ~
          frozen peas for a ice pack - will be doing often cuz it helps!
          ~
          Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

          Comment


          • #20
            Backwoods girl,

            i can't remembetr if you have to wait two weeks to start. It is just what they did with me. But I was the first one here in Las Vegas , so maybe they just needed to get all the paper work, etc, going.

            I had never seen this dr. before either. But I figured that he would have to be pretty well respected to have been approved to conduct the study.

            Don't be afraid. It is fairly easy. Others have gone before us and there have been no real complications as far as I have heard. i find out next week .. I do think my urgency is better. Keep in touch,

            JP

            Comment


            • #21
              HELP PrAYers needed

              Originally posted by jp View Post
              Backwoods girl,

              i can't remembetr if you have to wait two weeks to start. It is just what they did with me. But I was the first one here in Las Vegas , so maybe they just needed to get all the paper work, etc, going.

              I had never seen this dr. before either. But I figured that he would have to be pretty well respected to have been approved to conduct the study.

              Don't be afraid. It is fairly easy. Others have gone before us and there have been no real complications as far as I have heard. i find out next week .. I do think my urgency is better. Keep in touch,

              JP
              Dear jp and others,

              Please please please pray for me today and through this next week. My first appointment to start the study process was set to be friday. Well today seatlle called and wanted a copy of my hydro distension. I had asked my dr. in feb when I started the paper process and she assured me that I had done one. Well I called today to get a copy and it turns out my records show that I havent. I am in so much pain I want to die most days and my kidneys have been hurting more and more.

              I lose my insurance on sunday. Seattle said they would pay for it to be done as part of the study if I do it in seattle, but I would then have to wait an additional 3 months after the hydro to start LiRIS.

              I am scared I dont know what to do. I have to keep appointment for friday so either way I will start LIRis or I will sign to do a hydro and plan that on friday. but I hope that I can start LIRIs cause i hurt soooo bad. I just want to cry. I am frustrated, and upset that my doctor would say i have had the procedure done if i havent.

              grrrrrr. anyways Please pray!PLEASE!!!!!

              Thank you!
              ~Backwoods gurl
              22 year old Female just trying to feel a little "better" each day!
              Diaganosed with IC possibly in July 11-
              Actually diaganosed with it in September 11
              Frequency- 15-20x's a day
              Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
              Good days are short frequencys and maybe 3-5 flares- but rare.
              What im currently taking:
              ~
              Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
              elmiron 100mg 3x's a day
              Tramadol 4x's a day
              hydroxyzine- when needed to sleep
              Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
              Tri- Nessa Birth controll pills
              Pryidum three times a day for one or two days then not for 3 or 4 days at all.
              ~
              Strict IC diet... I am diet senitive.
              ~
              Heating pad/ blankets
              ~
              Hot baths... Normally every night and showers in am
              ~
              frozen peas for a ice pack - will be doing often cuz it helps!
              ~
              Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

              Comment


              • #22
                LiRIS

                Hey, gurl,

                I am praying for you that you will be able to go ahead and get some help right away. I am so sorry that you are having so much pain. You are a courageous soul to even put yourself out there for this study. You are not only helping yourself, but all the others. I pray today you will be able to find relief to some degree. I am truly sorry that you have to go through this awful disease at such a young age. But the future holds the promise of help, so don't give up hope. By trying to get involved with this study , and all that you have to go through, you are showing to yourself that you will keep striving and trying and doing whatever you need to do to get some help and not give up, that your life if worth more then just this IC. I support you, and I encourgage you, and I think you very brave.

                JP

                Comment


                • #23
                  Originally posted by jp View Post
                  Hey, gurl,

                  I am praying for you that you will be able to go ahead and get some help right away. I am so sorry that you are having so much pain. You are a courageous soul to even put yourself out there for this study. You are not only helping yourself, but all the others. I pray today you will be able to find relief to some degree. I am truly sorry that you have to go through this awful disease at such a young age. But the future holds the promise of help, so don't give up hope. By trying to get involved with this study , and all that you have to go through, you are showing to yourself that you will keep striving and trying and doing whatever you need to do to get some help and not give up, that your life if worth more then just this IC. I support you, and I encourgage you, and I think you very brave.

                  JP
                  JP,
                  Thank you! I found out today that i wont be able to do the study right away. I go in for pre op on thursday and i have surgery on friday. I try to be brave. I just want to feel better. If i can try something that may help, then i will. It does suck having this at my age. I think I am going to look into part time disablity. I have asked my dr for months now and they keep tellling me im young and to stick it out, but its getting hard to work and the stress of making my bills and stress of pain is just making me hurt more. So that will be my next step, just dont know how to go about it. I want to keep working its just hard.

                  Just because I have IC i dont want it to define who i am. I want to be me for me, not for ic. i look at it as something i just have to deal with and take one step at a time.

                  Thank you tho for your kind words.

                  wouldnt mind chatting more, PM me.
                  ~Backwoods gurl
                  22 year old Female just trying to feel a little "better" each day!
                  Diaganosed with IC possibly in July 11-
                  Actually diaganosed with it in September 11
                  Frequency- 15-20x's a day
                  Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
                  Good days are short frequencys and maybe 3-5 flares- but rare.
                  What im currently taking:
                  ~
                  Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
                  elmiron 100mg 3x's a day
                  Tramadol 4x's a day
                  hydroxyzine- when needed to sleep
                  Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
                  Tri- Nessa Birth controll pills
                  Pryidum three times a day for one or two days then not for 3 or 4 days at all.
                  ~
                  Strict IC diet... I am diet senitive.
                  ~
                  Heating pad/ blankets
                  ~
                  Hot baths... Normally every night and showers in am
                  ~
                  frozen peas for a ice pack - will be doing often cuz it helps!
                  ~
                  Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

                  Comment


                  • #24
                    Hey BW Gurl,

                    Just got back from my urologist. I thought that today I would learn whether I recieved the Lidocaine or not in the pretzel, but I will not be told. So, Now I can go back in and do it all over again, but this time, I will for sure get the lidocaine, so, i guess tomorrow i will start this all over. I didn't feel that the first instillation was all that amazingly helpful, so maybe I got the palcebo, so i will know now that i am getting the real deal.

                    I got CFS in 1978, was very , very sick for years. I was only only 26, had just had a baby and was teaching. A job I loved. But I had to give the job up. I got IC in 1989. I understand where you are coming from . I recieved SSDI back in 1987. The medical is what really saved me, as my checks were small as I had not worked for very long and had not made very much money. But the receiving medicare was a godsend.

                    It is very hard to have to change your life, and i had to at such a young age, also. But, I tried to be grateful, and as you said, not let my illnesses define me as a person. I never asked, "why Me?".. I tried to accept my life as it was playing out and do what I needed to do, trying to find the gift in everything. Not always easy , by any means, but I think it helped me many times not to despair.

                    Keep in touch. Good luck on Fri.

                    JP

                    Comment


                    • #25
                      to JP

                      Hey JP! Thanks for not only doing the study but for coming back to this thread throughout your times spent doing this and updating us.

                      I was just called by my Uro's office and offered to be a part of the trial they are doing where I live (Charleston, SC). I have been on Elmiron for almost 5 full months now and have definitely had some improvement with a combo of that, mostly following the IC diet, probiotics and as needed hydroxyzine. I understand it can take 6 months to a year to get the full benefit from Elmiron so I am VERY hesitant to start anything right now since I've had some improvement. With that being said I think if I heard that this study brought everyone that did it great relief for a month or more (and since it's free) I'd likely give it a shot - for now though I am just going to keep it in my back pocket and hope that the Elmiron keeps improving me more and more as time goes by. My ultimate prayer is that I am one of those people that can eat or drink anything they want b/c the Elmiron helps so much. Only time will tell but w/ the improvment I've gotten thus far I am hopeful. Please continue to keep us posted on your experience with this. I hope more people thad to the trail will report here as well. Thanks so much for doing this and I am praying for you that it does work and it works well!

                      I hope you fee better soon!
                      Diagnosed w/ IC 12/2010. 3 small kidney stones removed in May of 2011.

                      Currently taking: Elmiron (3 times a day-pour capsule into about 4 oz. of water and drink it down (with a little food on my stomach first), Valium (an eighth to a fourth of a pill as needed (rarely need this anymore), and Curelle Probiotics -one a day in the morning on an empty stomach.

                      Tried: Urelle, Prelief, Oxybutynin, Urogesic Blue, antihistamines, nuerotin, flomax, vesicare, enablex, cystoprotek, prozac, quercetin w/ bromelaine, marshmellow root tea, garlic pills, fish oil, magnesium, Vitamin D-3, Boron, B-12 w/ Folic Acid drops. Homeopathic allergy shots for food and inhalents.


                      **Elmiron and Culturelle Probiotic have helped me get a better quality of life. I've been on the Elmiron for 6 months so far and am feeling so much better and can eat and drink so much more!

                      **I love the ICN - it has been a blessing in the midst of this evil curse!!!

                      Comment


                      • #26
                        allisun13

                        Thank you for the very sweet and encouraging words.

                        I am through with the first stage of the study and have opted to go ahead with the second. Meaning, the first stage was "blinded".. No one knew what I got, the Lidocaine, the placebo, or the sham.

                        Yesterday, I received the Lidocaine for certain in the unblinded part of this study. Now, I know that what is in me for two weeks is the actual drug. I can't really say that I was a 100 % free of symptoms. And with IC, sometimes we just are in a better place for awhile and the flares are not as often. So, I don't really know if I had the lidocaine the first time or not.

                        Now, I do know. So, I can report if it really helps a tremendous amount or not. I will let you know.

                        Thanks again. And I hope that , yes, the Elmiron helps you so much that you can eat and drink lots of things. I was able to do that for years and years, but now I am not so fortuante and am going from one flare to the next,but if you can have a period of time when you are pretty symptom free, then HOORAY !!!

                        Keep us posted.

                        JP

                        Comment


                        • #27
                          to JP again

                          Hey JP! I hope that you did get the placibo last time and this time there will be significant improvement. I tried home instills of heparin, bicarb and lidocaine and for me they seemed to worsen my symptoms. It gave me bad spasms (urgency). Not sure if my bladder didn't like the sodium bicarb (salt) or what but I quickly gave up on those. It does seem like for us all that it is going to be period of on and off again trail and error w/ meds to try to minimize symptoms as much as possible for as long as possible since there is no cure. Which is why it's great that they are still trying new things like this to help and people like you are out there willing to give it a shot. Are they doing EKGs and bloodwork on you? Are they giving you copies of the blood work if so? The info my doctor's office emailed me said they monitor those things. I was just curios if you got any of those results or feedback on any of that. Also it said you could be compensated up to $550. Not that $550 is a lot of money but for those of us w/ IC it can certainly help w/ treating options. Look forward to hearing more from you on how this second round goes. Wishing you the best!
                          Diagnosed w/ IC 12/2010. 3 small kidney stones removed in May of 2011.

                          Currently taking: Elmiron (3 times a day-pour capsule into about 4 oz. of water and drink it down (with a little food on my stomach first), Valium (an eighth to a fourth of a pill as needed (rarely need this anymore), and Curelle Probiotics -one a day in the morning on an empty stomach.

                          Tried: Urelle, Prelief, Oxybutynin, Urogesic Blue, antihistamines, nuerotin, flomax, vesicare, enablex, cystoprotek, prozac, quercetin w/ bromelaine, marshmellow root tea, garlic pills, fish oil, magnesium, Vitamin D-3, Boron, B-12 w/ Folic Acid drops. Homeopathic allergy shots for food and inhalents.


                          **Elmiron and Culturelle Probiotic have helped me get a better quality of life. I've been on the Elmiron for 6 months so far and am feeling so much better and can eat and drink so much more!

                          **I love the ICN - it has been a blessing in the midst of this evil curse!!!

                          Comment


                          • #28
                            allisun13

                            Yes, they do blood work whenever I have to go in. Also, BP, sonogram of how much urine I am retaining, weight, height.

                            I am going to be compensated about $627.00. Which, like you say won't be much, but it is a little perk. I signed up for this before knowing there was any $ involved, so I was pleasantly surprised.

                            Keep up the hope and keep on smiling. Today is all we really have, and what a gift it is inspite of this disease.

                            I really like ICN also.

                            Talk to you soon,

                            JP

                            Comment


                            • #29
                              LiRIS

                              Thanks for the encouragment, Briza!

                              JP

                              Comment


                              • #30
                                Optimist

                                Thanks, ICN... Love you guys..

                                JP

                                Comment

                                Working...
                                X