My Story Part 6: No More Fentanyl For Me

In part 5 I detailed my struggles with all of the chemo induced side effects.  One of the worst, and definitely the longest lasting for me is the peripheral neuropatnyThe neuropathy started during chemo but it’s worst effects didn’t start until a few weeks after chemo when my feet began to burn badly and the tingling in my fingers intensified.  When my feet get hot they feel like I’m standing on hot coals and when they get cold the feel like I’m standing on a block of ice.  My toes also get stiff and lock up.  I’ve gone through many drugs with limited success but what seems to work the best is Fentanyl.  Fentanyl is essentially synthetic morphine but its about 100 times more potent than morphine.  It’s given in micrograms as opposed to milligrams.  The delivery method for home use is a trans-dermal patch similar to the patches smokers wear to stop smoking.

I came upon Fentanyl while having my yearly colonoscopy and when I had my porta-cath removed.  I noticed that after the procedures my feet didn’t burn for a few hours.  I asked what was used in these procedures and found out it was Fentanyl.  I mentioned it to my doctor and he put me on the patch.  This was a couple of years ago and I was working at the time.  We started at 25mcg where I got some relief and then we went up to 50 mcg.  I replaced the patch every 72 hours.

The Fentanyl definitely reduced the burning, but since I was working it started to interfere with my ability to think clearly.  I also noticed that I started to feel sick and got sweaty and anxious prior to the 72 hours.  This is when I knew that my body had had become physically dependent on the drug.  I decided that I couldn’t remain on the drug even though it helped reduce the pain.  What came next was horror.  I removed the patch without consulting with my doctor and by the next day I thought I was going insane.  I was sweating profusely, had upset stomach and abdominal pains and got very depressed and anxious.  I couldn’t eat and wound up in the hospital for dehydration.  I can’t remember how long it took but I eventually felt better and I swore I would never use the drug again.

Well, over two years later and now on disability again, I decided to give the Fentanyl another try.  I figured since I’m not working I’d be able to better manage the side effects, or at least it wouldn’t matter as much.  I’ve been in pain for so long I was willing to try anything.  I’ve been seeing a pain management specialist and he agreed to try the Fentanyl again.  He started me at the smallest dose, 12mcg every 72 hours.  It seemed to help so he increased it to 25mcg every 72 hours.  Just like the first time, prior to the 72 hours the effects began to wear off.  I didn’t feel sick but the burning started getting worse prior to the 72 hours.  Instead of going to the 50mcg dose like the first time he had me replace the patch every 48 hours. This appeared to solve the problem of losing effect prior to the 72 hours, but it also increased the insomnia.  Over the next month I began to feel very tired and lazy.  I decided this was not going to be a long term solution.  Even though I’m not working I don’t want to go though life sleepy and lazy.  As a test, I removed the patch.  Sure enough, after a few hours I got upset stomach and abdominal pains, the sweats and chills and started to feel really anxious.  I put on another patch and contacted my doctor telling him I wanted off the patch and asked him how to proceed.  He prescribed oxycodone in order to wean me off slowly but that didn’t work very well. I still got very nauseous, anxious and completely lost my appetite. Exactly one week after taking the patch off I was so weak that I had to go to the ER, again, in order to get some fluids pumped into me. When I told the ER doctor my story she called the pain management center to ask them how to proceed (and maybe to check out my story). My doctor is out of the country indefinitely so she spoke with someone else. He told her that oxycodone probably wasn’t the best selection for weening off of the Fentanyl and advised her to give me Dilaudid, which is a semi-synthetic morphine but not nearly as strong as Fentanyl. She started me on the Dilaudid through my IV. Between the fluids and the Dilaudid I felt much better. I think I was there for six or more hours. The bonus was that since I was given the drug intravenously it was more potent and my feet stopped burning. Unfortunately it didn’t last. My wife picked me up and I went to get my prescription of Dilaudid tablets. They told me to take 3 per day for five days, two per day for five days and one per day for five days. NO WAY! I did it the first day and thought I was going crazy! My breathing was shallow and fast and I couldn’t sleep that night. Since it had already been a week since I stopped the Fentanyl I was through the worst of it so I decided to try one Dilaudid per day and that was enough to keep me from getting violently ill. I just made sure I drank a lot of fluids. I also found out that the pills didn’t have the pain killing effect of the IV. Bummer.

So here I am again.  My feet are burning and I have another prescription for yet another drug.  This time we’re going to try Topiramate.  It’s an anti-seizure drug similar to Gabapentin and Pregabalin (Lyrica).  I tried both of those.  I got slight relief from Gabapentin but I had to take 2.7 grams per day so I stopped.  There is no generic Pregabalin so it was too expensive.  Anti-seizure drugs are used off label for peripheral neuropathy.  He told me to wait until I have the opiates out of my system so I expect to start some time soon.

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