What I did on my summer vacation: tapering, withdrawal, and Reboxetine

This entry is long overdue, as I’ve been through a lot of pharmaceutical changes over the last few months.  It started when I was in a drug trial for Relistor, and the study doctor suggested I enter another trial she was running for a “new” fibromyalgia medication, Reboxetine.  Reboxetine isn’t new by international standards, but I think it’s had trouble getting being released in the United States because of some patent issues related to the drug Strattera, so it’s just now in stage 3 studies and aiming for FDA approval in 2009.  The drug is essentially a reformulated, extended-release form of Strattera, and it inhibits the reuptake of norepinephrine.  I figured the trial might be a good thing, because I’ve always done well on SNRI drugs like Effexor and Cymbalta, and I’ve also had decent response to FMS “brain fog” treatments, like Adderall.  The trial was going to provide tons of free blood work, free EKGs, free urinalysis, free meds, and some financial compensation as well, so I was happy to enroll.

The doctor running the study said that she’d seen huge improvements for many patients, and encouragingly, the improvements were showing up in a matter of days.  It all sounded great except for one thing: to enter the study I had to stop taking both my regular antidepressant, Cymbalta, and my main opioid pain medication, methadone (I was allowed to keep using the occasional “rescue opioid”, which in my case was oxycodone).  Tapering one drug after long-term use can be a slow and tedious process, but I had to taper two at the same time, and I had to taper fairly quickly (I had about a four week window, maximum, to clear both from my system).  Both had their downfalls—the Cymbalta came in a time-release capsule so I couldn’t break it down into smaller doses (and I only had 60 and 30 mg pills in the house), and methadone is notoriously difficult to taper because of its long half-life.  At least it came in pill form, so I could break it down into smaller segments as needed. 

I went with the methadone taper first; I was taking about 30 - 45mg per day, so my dose was pretty small compared to the folks who are on 300mg+.  I thought the taper would be easy, because I was still taking a bit of oxycodone, and I figured that my brain wouldn’t notice if I just swapped out one opioid for another.  Wrong, wrong, wrong!  The actual tapering down to a dose of just 2.5mg per day wasn’t terrible, but when I quit that final 2.5mg it only took about 24 hours for me to have some pretty nasty withdrawal symptoms.  Leg cramping/restless legs, anxiety, intestinal cramping/diarrhea, cold sweats… I was pretty much a textbook case, although I don’t think I had too much nausea.  I felt miserable, and if I hadn’t had a ton of Ativan and Xanax in the house I think I might have given up.  I had the withdrawal symptoms badly for about a week, the symptoms lessened more after two weeks, but it was about four weeks before I felt like I really had all the methadone out of my system.  Other than Ativan, the thing that kept me from giving up was just putting each day behind me… once I’d survived three days of leg cramping, for example, I didn’t want to backslide and have to endure it again.

To say that I was surprised by the problems I had with the methadone taper would be an understatement.  I’ve never had any sort of addiction issues, and always I’ve found that slow tapering of any medication is an easy way out of my physical dependency symptoms.  In short, all my drug tapers have been easy, if not sort of slow, so I was shocked to feel actual withdrawal symptoms despite my best efforts to avoid them.  Since stopping methadone my pain is not as well-regulated, but I’m not as fatigued, and I’m definitely not as constipated.  The latter issue was a big, scary deal with methadone, and while part of me misses my cheap pain relief, I don’t miss all the bowel problems.  I’ve got a month’s worth of methadone left, but I don’t ever plan to go back down that road after those unpleasant four weeks.

You can probably imagine how excited I was by the prospect of tapering Cymbalta after what I endured with methadone.  It was pretty easy to cut my dose from 60mg to 30mg (all I encountered was a headache), but I wasn’t sure where to go from 30mg because I didn’t have (and couldn’t afford to buy) the 20mg capsules.  So, I did the unthinkable, and ill-advised:  I broke the capsules opened, hoped the little time-release balls would average themselves out, and just tried to make my own half-doses.  I guess it worked okay, because this taper was pretty uneventful (except for the aforementioned headaches, which were remedied by Advil).  There’s a chance it might have been worse if I’d been cutting all neuro-modulators out of my life, but starting Reboxetine relatively soon after stopping all my Cymbalta may have helped my brain with the adjustment.  It was missing some serotonin, but otherwise the landscape was pretty familiar.

I’ve felt a sense of freedom since stopping methadone and Cymbalta, because Reboxetine isn’t supposed to have a discontinuation syndrome, so I’m no longer tied to my medication in the same way I was.  I guess I’m a bit tied to my small does of of oxycodone, but I’m comfortable with that drug and know from experience that I can taper it easily.  I lost a lot of weight in the process of stopping my meds, so it jump-started some dieting I needed to do (I’ve lost about 35 lbs. in the past year, but the most recent 15 lbs. has been since August).  I realized how fatiguing both methadone and Cymbalta were, but I also realized that Cymbalta helped to ease some of my chronic pain.  Overall, I think it was good to get perspective on how my medication made me feel, and I couldn’t do that until I no longer had the medication in my system.

I’ve been in the Reboxetine study for about seven weeks.  It’s a double-blind study with a placebo, but I know that I have neither a placebo nor the highest tested dosage… I’m probably around 4mg, or perhaps 6mg, on a possible scale of 2mg to 10mg.  There are good things and bad things about it, and I unfortunately have to say that it hasn’t been a miracle cure for my fibromyalgia, and I still feel pretty crummy most days.  However, it does seem to have decreased my overall pain level, and it definitely contributes to mental clarity (although the flip-side of that is that I’ve gone from wanting to sleep all day, to having trouble sleeping more than 6 hours).  It causes uncomfortable sweating and it sometimes feels agitating, yet it doesn’t cause things like heart palpitations or dizziness.  The one thing I wish it could do, and it can’t, is to raise my serotonin levels.  Reboxetine is successfully used to treat depression, and I’d hope it would treat mine as well as Cymbalta or Effexor did, but it’s unfortunately worsened my anxiety issues instead of improving them.  I’ve read that it can be combined with an SSRI if needed, and I’d love to try that, but I can’t until I’m out of this drug trial (and when I’m out of the trial, I won’t have access to the drug, so it’s a moot point).

For now I’m sticking with the Reboxetine study, but I don’t honestly know if I’ll last the entire 16 weeks, let alone decide to enter the continuation study (12 months).  My anxiety issues are troublesome, and I’ve found myself feeling nostalgic for Effexor or Cymbalta.  If either of those drugs were affordable for me I’d probably already be back on them, but they aren’t, so I’m just trying to hang in there in hopes that maybe the Reboxetine will work better the longer I take it.  If I had health insurance (or disposable income), my ideal medications would probably be Provigil and Effexor XR.  I’d also be on oxycontin or fentanyl patches instead of short-acting oxycodone.  For now I’m just trying to appreciate the things that Reboxetine is helping with, because there’s something kind of neat about waking up in the morning and actually feeling awake.

Posted by on 11/15 at 02:47 AM

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