Fentanyl for Dercum's Disease User Reviews

• TTT...
• Taken for 2 to 5 years
• February 19, 2015

"I started using fentanyl for Dercum's disease over 4 years ago. I started on 25 mcg and it worked great until my body demanded more or became used to the medicine. I went to the 50, then to the 100 mcg every 48 hours. I felt normal again from the pain of this horrendous disease to a point! No one really understands how extremely painful this disease is! I just had a pain pump installed in October just because it's much safer for long-term use, and I will say what a difference. If it wasn't for this medicine, I'll be as honest as possible, I would have taken my own life! It's that bad. I just wish more doctors would research this and understand, not make people think it's all in their head, which they do!"

• emk...
• Taken for less than 1 month
• October 26, 2013

"I was in so much pain, and the other options, like Lyrica and Cymbalta, gave me serious allergic reactions. The only problem I had was that no doctor besides Dr. Karen Herbst in AZ (a specialist in Dercum's disease) understood the extreme pain of this disease. At least, not in my HMO, Kaiser Permanente here in Northern California. I had a month's worth of 25 mcg fentanyl patches, and for the last three weeks I have been on them, I have been able to be a 'Mom' again and participate with the family, take care of them, and join in actually living my life again. I am at a loss on how to convince the pain doctors at my Kaiser that this 'chronic pain' patient's quality of life is greatly improved by the use of opioids, in this case, the fentanyl patch."

• mis...
• Taken for 1 to 6 months
• August 15, 2014

"I've been diagnosed with Dercum's disease last year in July 2013. I've tried too many medications to count. I live in Alberta, Canada. I don't know what the medical regulations are in the U.S. or if they differ from state to state. Here, as far as pain allowances go before they decide to prescribe opiates of any kind, they leave it up to the prescribing doctor. I went from Lyrica to gabapentin to mexiletine to hydromorphone and now the fentanyl patch (100 mcg) every 3 days. Does it work for me? I would say yes, to a degree. I'm on all those meds mentioned above minus the Lyrica. My pain levels on average daily are at an intolerable 8 on a scale between one and ten. It's bearable, whereas before it was excruciating."