I'm currently 8 weeks out from completing 6 weeks of radiation (no chemo), which was preceded by a double tonsillectomy, TORS surgery and a neck dissection. Toward the end of radiation I was given two prescriptions for Oxycontin (15mg long acting) and Oxycodone (5mg quick release). Techinically these are both Oxycodone, just delivered differently.
At the peak I was probably up to about anywhere between 80 and 115mg per day. As I progressed we started cutting back slowly to a point where I as at a fairly consistent dosage of 75mg/day. When I went for my six week follow-up after radiation, my doc suggested I ramp it down. Through a series of miscommunications on both our parts I went from 75mg a day to just 15mg for several days. He wasn't exactly clear on exactly how quickly to cut back and I jumped the gun. On my 2nd day at 15mg I vomited for the first time in 40 years (seriously... last time was 1979). All of a sudden I felt this overwhelming anxiety. I was extremely jittery and had a very difficult time sleeping, alternately sweating and getting chills.
At first I didn't know where these symptoms came from. It was my amazingly perceptive wife who wondered if it had to do with the change in my med dosage. A quick Google search of oxycodone withdrawal made the answer clear right away. I was suffering from opioid withdrawal. I went back and forth with my oncology nurse on the phone and she said the doc was recommending to stay at the lower dose (though I'm not sure he knew exactly how low I had gone). After a few days I got in to see my PCP and she said it was definitely withdrawal. She got me on a plan to maintain 60mg a day with both long acting and quick release. She also got me an appointment with the pharmacist at their office. When I met with him he gave me a much more detailed plan to go down from the 60 I was at to 30-45 or so over the course of two weeks. I saw a psychiatrist/therapist for help with the anxiety and he agreed it was a good plan. I was also given hydroxyzine and clonidine to manage the withdrawal symptoms.
I'm in the middle of the two week taper and things are MUCH better than they were. I still get some anxiety and some days are harder than others. But it's far more manageable. I'm meditating (which I've done for years anyway), getting out to do social things, and reminding myself that the main cause of these feelings is chemical.
When I met with my psychiatrist he noted that just this week the FDA issued a warning about getting off of opioid pain medications too quickly. They are making new recommendations for doctors and patients. Here's the link:
https://www.fda.gov/Drugs/DrugSafety/ucm635038.htmI want to warn others to be advocates for themselves when it's time to reduce opioid dosages. Read the FDA info and be assertive with your docs that you want a plan that gets you off opioids but does not do so too quickly. As the FDA says, that increases the danger of serious addiction or replacement with worse alternatives. (Also, be very sure to keep up on your prescriptions and make sure they get refilled before you run out. A few days without could be awful, and not just because of pain.)
What I think people really need is a very specific schedule to reduce their dosage when pain subsides. If a doctor says "Start cutting back," I'd say ask for numbers/dosages and specific timelines. To me it would be easier and more clear if they put folks on an explicit schedule; Two Week Taper, Day One - Xmg total, Day Two - Ymg total, Day Three - etc. See if you can get your doctor be much more specific with dosages and timelines. Follow up with questions if you have them. Note that the FDA says some people may need to be tapered ny 10%-25% every 2-4 weeks and that even if you taper slowly there's a likelihood of experiencing some of these symptoms.
I mention this because I'd hate to see any other folks here get hit with withdrawal or addiction on top of the other issues that we're dealing with. And there are so many aspects we need to educate ourselves about.
I hope this is helpful to you. If you have any follow up questions or concerns to share, please post them and I'll address them as best as I can. I'm also curious if any others have had any similar experiences.
All the best in your recovery and health!
Brad
