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  • Johnson&Johnson Suspends Pain Study

    I was very disappointed to learn that yet another pain therapy under study has been "suspended" by the company... in this case Johnson & Johnson has halted the fulranumab study that we promoted just last week.... just as Pfizer suspended the tanezumab study last summer. Two blows for the IC community. AstraZeneca and Regeneron have halted similar studies as well.

    Why?? While these medications were believed to be the next generation in pain medication targeting nerve growth, clinical trials studying their effectiveness in reducing back pain revealed that they apparently disrupted the blood supply to bone leading to bone death, joint deterioration, osteoarthritis and, for some patients, the need for joint replacement surgery.

    http://www.bloomberg.com/news/2010-1...e-concern.html

    I find myself very disappointed by the news. I had great hopes for this new type of pain medication.

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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  • #2
    Most drugs ending with the letters MAB, biologics I believe they are called, cause very serious side effects. They are usually very costly and often have to be injected. I wouldn't want to be one of the first patients to try them.

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    • #3
      I am disappointed too Jill

      We need a big company like Johnson and Johnson to take interest in our cause to help us with our pain that is very disappointing what do we have to do to get noticed, I have written so many letters to doctors I don't even know and to universities, TV shows and no one seems to care about IC they don't have it and are not suffering so sweep it under the carpet it does not consern them it just plain sucks. We need to come up with a plan to make ourselves heard in a big numbers all of us ICers to write to Washington DC or to the Health Commission and say we are going to file a suit or something because they seem to have plenty of money to research cancer, aids, MS, and so many other diesases but what about us we suffer every day we never get a darn break and it is as if no one hears us we are invisible Lets come up with some kind of plan all of us ICers and get ourselves noticed Lets make 2011 the year that everyone finds out what IC is and how it takes over our lives and leaves some of us without jobs, or husbands, or we can not afford our medications becauase to expensive and there is not a generic one so no computition so the drug company can charge us such a high price i am so darn mad. We need a cure and we need it now and we need good pain meds to help us get on with our lives until someone finds out how to get rid of this horrible moster of a diesase..

      Originally posted by darlene View Post
      Most drugs ending with the letters MAB, biologics I believe they are called, cause very serious side effects. They are usually very costly and often have to be injected. I wouldn't want to be one of the first patients to try them.

      Comment


      • #4
        It seems that all of the "doctor" shows on TV are much more concerned about weight control and staying young. They have gone off the page with real life diseases, and are going for what is popular at any given moment.

        Maybe what we need is to find someone FAMOUS who has this thing to be an advocate and get out there in the media. Any ideas on that? Are there any stars who have this, and would they be willing? Just a thought. Jill, wife of Bob

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        • #5
          Hi everyone: How are u all?
          I was wondering if anyone was involved in the Genetic Study of Interstitial Cystitis being performed by the Childrens hospital of Boston
          or if you know of anyone that is involved in it. .... you don't have to live near Boston ... everything is done through... the mail. it sounded interesting to me and was wondering if anyone is participating?

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          • #6
            I am about to start participating in that study. I just got some info in the mail yesterday.

            I am so disappointed that all the pain med studies seem to go bust. I am anxiously awaiting something to help my pain other than narcotics. I hate having to take pain meds daily and the side effects are unbearable, but the alternative pain is too much to handle. I am still hoping for some relief soon.
            Link to the patient information, everything from What is IC? to Disability
            http://www.ic-network.com/patientlinks.html

            American Urological Association Clinical Guideline
            Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
            http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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            • #7
              Hi,

              My family is also enrolling in the study. My daughter has IC in addition to myself and I believe one of my sisters also has mild IC. The investigators in the study seem very busy and it's taking awhile for my entire family to get enrolled. but it's very exciting to be a part of clinical research to say the least! :-)

              Jill
              "Where there is hope there can be faith. Where there is faith, miracles can occur."

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              • #8
                sailawaygrl and jvr
                I hear you about narcotics - ugh. I can't get off due to the pain, but the side effects are really causing problems with everything. Thank you both for participating. These studys could eventually bring help to many.
                Teresa

                We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

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                • #9
                  studies & pain meds

                  Think there is just so much abuse of pain meds that the funding might get pulled. There are a lot of people in pain from many different diseases. If they can't find the cure, they could at least keep folks comfortable. Chronic pain is very harmful in many ways. Hope they reconsider or try to reinstate it. Opioids are not something anyone wants to take, but are sometimes a necessary evil. There HAS to be something else out there. Wish I was a scientist. Jill, wife of Bob

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                  • #10
                    i am considering getting involved in the clinical trial Genetic Study of Interstitial Cystitis ...... no one that i know of in my family has IC except me. I am sorry to hear that you and your daughter and sister have IC, jvr.

                    Unfortunately, I have had a severe case of IC for many many years... i HAD to go to pain management for intractable pain from IC... i take narcotic meds for pain management and it is the only thing that has helped my pain levels and i have tried Everything before i resorted to pain management. i have had ic for 21 years now.
                    Yes, the pain meds have very serious side effects, but i would rather deal with the side effects than that never ending severe, unescapable pain that i had for soooo long. i am not pain free, but just not as severe as before.

                    God Love all of you and thanks for just being out there and responding ........

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