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  • Others have bad reactions doctors don't believe

    I found this while I was cruising around here on this network, reading things and trying to learn...and it spoke to me because of my recent experience with the doctor not believing me about increased bladder pain with Elavil.

    It saddens me to know that so many of us have adverse reactions to the dyes or fillers in many medications, and it saddens me even more that doctors do not believe us.

    It's so unfair, because first we have to deal with the pain caused by the reaction, then on top of that disappointment that the med didn't work for us, and then to add insult to injury, we have to report that to a doctor who only gives us attitude about it instead of believing us.

    Anyway here's an excerpt from the article where she talks about this problem. Her experience was with Neurontin, but she might as well have been talking about Elavil, Elmiron, or any other medication in the world.

    Love, ICY

    My Experience with Neurontin

    When I tried Neurontin I had an immediate sensation of well-being, perhaps because I am so sensitive to medications. My body felt like it did when I was 10 years old. I felt so light that I wasn't aware of my everyday aches, pains and heaviness. But, after a couple of minutes I began to experience bladder pain, and I was very upset because I wanted the good feeling to last. I was even brave enough, or crazy enough, to try Neurontin again the next night. I did this just in case my bladder reaction was caused by something else, although I usually know the direct correlation. Same thing happened on the second try, but the pain was worse because two irritants in two days in a row further inflamed my bladder.

    I was prepared for my neurologist, who prescribed the Neurontin, not to believe me. When I told her that it bothered my bladder, she said "Ms. Sandler this is not possible." "It must be something else bothering your bladder." I told her "that after 16 years of IC I know what bothers my bladder." We agreed to disagree. After all, she's not an urologist. She is a very good neurologist who I hope will help to relieve the sharp pins and needles in my hands and feet.

    When I saw my urologist for a treatment to soothe the bladder inflammation caused by Neurontin, I told her about my reaction. She took out her PDR (Physician Desk Referral) to find the fillers in Neurontin. She is always on my side and I love her.

    After my appointment I decided to call the drug company, Pfizer, who makes Neurontin. I expected complete cooperation because drug companies must report certain types of drug reactions to the FDA. Pfizer was very interested in my reaction to Neurontin. And, because I knew that there had to be other IC patients with the same problem, I volunteered to find the other patients. The Pfizer representative I spoke with said that they would be very interested in hearing from other IC patients.

    I am now on an important mission. I have sent e-mails to the members of an IC support group in Massachusetts, inquiring if anyone has experienced bladder reactions or other side effects with Neurontin. I received two e-mails from patients who experienced bladder pain and/or urinary frequency after they took Neurontin. Their doctors did not believe them.

    Because Neurontin is a very important drug for pain, we need other IC patients who have had similar reactions to contact Pfizer. This may make it possible for doctors to accept the fact that possibly the fillers (inactive ingredients) in this medication may hurt some IC patients. Since we all have struggled with doctors who do not believe us when we have reactions in our bladders to medications, this is very important. And, who knows? There may be a chance, if there are enough patients who have had bladder reactions to Neurontin, that Pfizer could reformulate the mediation without the mysterious irritating filler. I would be grateful because I want to be able to take Neurontin.

  • #2
    Just a side note....Where you aware that the makers of neurontin have recently gotten into some trouble for making false claims? I believe it had to do with the ability of their drug to help patients with mood disorders. Apparently, they had a campaign to FOOL doctors into thinking there were studies showing neurontin would help patients with mood disorders, but there weren't any such studies. I remember reading the report and I was really shocked that a drug company would participate in something so underhanded and dangerous. They got into a lot of trouble for this and of course it's been corrected since it was discovered. I understand neurontin can be a good drug for pain though...but I don't totally trust them since learning about this deception.

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    • #3
      Hi
      i have been on Neurotin since May, ranging from 800 to 1100 mg three times a day for IC pain. I have been in a terrible IC flare since January and I was referred to a pain management doctor who put me on it. I have not noticed any change in my pain status and the urologist has kept me on it with Loratab.....I am interested in what symptoms you developed in your bladder from this medication. I also had an Interstim implanted in June for urinary retention.
      Thanks, Tina hi

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      • #4
        I had a terrible bladder burn from neurontin. the neurologist who prescribed it didn't believe me, either. I don't know what's in it that is the culprit, but any medication that I take seems to have that effect. I, too, have called drug companies to talk to their "unusual incident" managers. They told me "it's something in the pill or something in the pill reacting in your system." Gee, thanks! Let me know if you need more information from me.

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        • #5
          i have also seen that there is a big law suit out on neurontin.
          I have also tried this and couldn't take it May have been a good thing after what i seen on t.v
          Medicine taken daily or as needed:
          1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
          2. MS.Cotin 100mg 3x daily
          3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
          4. Fentanyl 100 mg Change every 48hrs.
          5. Gentamicin 80mg install after each rescue treatment
          5 Leviquin 500mg self start as needed.
          6. Klonopin 1 or 2 daily as needed.
          7. Prosed/DS as 1 every 6hrs as needed.





          I have IC, but IC doesn't have me anymore!

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          • #6
            I have had good results with Neurotin. It has helped me alot with the pain. There are times I need something stronger. I am on 100 mg 3x a day.
            Hang in there , There is hope.
            There is hope. Prayer works.

            Love, Debbie

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