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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.
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.
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