Fentanyl 7 Months Off After Five Years Of Using The Patch (Page 2)
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Just wanted to update and touch base with anyone wanting to stop using the patch or struggling through withdrawals. I was on the Fentanyl patch, ranging from 150 mcg to 25 mcg, for five years due to a rare debilitating, extremely painful disease called Dermatomyositis. This disease causes deep skin lesions and basically eats away the muscles of your upper arms and upper thighs and hips. It prevents you from doing anything requiring raising your arms above your shoulders, It also prevents you from walking up hills, stairs, etc. It eventually affects your lungs and swallowing. This disease crosses over with SLE and Fibromyalgia. I take 16 prescription drugs including a chemo injection and a med that is given to organ transplant patients to keep my body from rejecting itself plus the typical Lupus meds. When I was first diagnosed I was in so much pain they immediately put me on a 25mg Fentanyl patch. It was like a miracle sent from heaven. I could finally get out of bed. I was able to travel, interact socially, do chores, etc. Eventually, though, the 25mcg wasn't enough. The disease progressed as did my patch dosage. I refused to go over 150mcg. Little did I know my miracle from heaven would end up being a drug from hell. Over five years, I found myself going into withdrawals over and over. I would lose one and run short. I had a box stolen while staying in a hotel. My doctor went out of town without writing my prescription. Over and over things like that happened. I had surgery and the pain relief was non existent. More and more I found myself once again in bed. Not from pain, but from lack of interest in life in general. My pain was numb but so was my libido, brain, heart, and everything else. The last time I had to go through withdrawals did it. The sweat so strong from your pores you can smell the Fentanyl, the pain, the sneezing, coughing, yawning, the horrible insomnia, the compulsion to rock, twist, bend, move. The horrible anxiety. I knew I could not continue to live life this way. So after coming very close to reaching remission in July, I decided to get off the patch. I did it slowly, tapering down, but it didn't matter. The withdrawals were along for the ride. It was three months before I actually starting feeling a little bit normal. It was five months when I finally felt like my true self again. Unfortunately, my remission did not last but I made a decision that patch would never be put back on my body until the doctors tell me I am end stage and have less than 4 months to live. I still take hydrocodone, flexeril, Klonopin, and gabapentin as needed. And Ambien and Ropinerole to help me sleep. I have now been Fentanyl free for seven months. If anyone has questions or needs support in your journey, please let me know.

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This gives me so much hope! I recently (2 weeks ago) electively decided to taper off fentanyl patches. I also have Lupus, as well as a lengthy list of other chronic pain issues that tend to go hand in hand with Lupus. I was on 50mcg for a year. At one point my doctor attempted to raise my dose to 75mcg but it was too strong and I ended up removing the patch just 10 hours after applying it, deciding to remain on the 50mcg patches. I've lost an incredible amount of weight (100+ lbs) over this past year and I began to feel like the 50mcg patch was too strong (it felt exactly like the 75mcg patch did several months ago when I had attempted it). After discussing it with my doctor, he agreed on lowering my dose to 25mcg. I tolerated the taper very well (which was 2 weeks ago) but now, I feel the 25mcg patch is too strong as well. I changed it today (making it my 4th 25mcg patch) and about 8-10 hours after changing it, I became MISERABLE yet again. It feels way too strong, exactly like the 75mcg and 50mcg patches felt. I'm vomiting and want nothing more than to take this patch off and flush it and walk away from fentanyl forever! The pain it was prescribed for is more tolerable than this severe nausea and weakness. I have dropped another 15-20 lbs since my fentanyl decrease, mostly from being more active and eating healthier, but it's still a rather significant weight loss. I spoke with my pharmacist a few hours ago and he told me to apply phenegran gel to my wrist to help with the nausea and agreed that the sudden/rapid weight loss could be making the fentanyl side effects more noticeable. Now, my doctors office and pharmacy are closed...I wonder if it would be safe to just take the patch off and be done? Any advice is welcome!

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