Mental Healthcare Benefits Under the Affordable Care Act

With the imminent arrival of the already-much-loathed DSM 5 and my thoughts more frequently turning to moving back to the US (I currently live in The Netherlands), I’ve been thinking a lot about what a move would/will mean for my mental healthcare.

By the time I return, the Affordable Care Act (AKA ‘ObamaCare’) will have gone live.  I never paid much attention to the finer points.  I will probably never have to opt in, but would still like to be educated about the peaks and pitfalls. In the last

Barack Obama signing the Patient Protection and Affordable Care Act at the White House (Photo credit: Wikipedia)

two weeks there has been a spate of articles on the topic in mental-health-related publications, so now is as good a time as any to get the skinny.   A lot of noise is (again) being made in the right-wing media on the subject.  Since the GOP BS Machine has been known to spout incorrect rhetoric, I wanted my own answers.

For starters, I went directly to The White House.  Well, the blog, anyway.  There I found an entry by Kathleen Sebelius, the US Secretary of Health and Human Services, that was cross-posted from the HHS (Health and Human Services) blog.  While the majority of the April 10, 2013 entry talks to gun violence prevention, there is a paragraph that addresses the Affordable Care Act and mental illness coverage:

The President’s [2014] budget builds on the historic advances we have made to close the gaps that left too many Americans with behavioral health problems uninsured and underinsured. Beginning in 2014, the Affordable Care Act will provide access to quality health care that includes coverage for mental health and substance use disorder services. All new small group and individual private market plans will be required to cover mental health and substance use disorder services as part of the health care law’s Essential Health Benefits categories, and behavioral health benefits will be covered at parity with medical and surgical benefits. Also in 2014, insurers will no longer be able to deny anyone coverage because of a pre-existing behavioral health condition. The Affordable Care Act has already ensured that new health plans cover recommended preventive benefits without cost sharing, including depression screening for adults and adolescents and behavioral assessments for children.

Underline is mine, and a point that had nagged at me.  Both the GOP and some psychiatric publications have stated that under the Affordable Care Act, mental healthcare would not be covered by the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA).  They are wrong.  Thankfully.

As I continued to read, I delved further into more views of those in the crazy-biz.  Three themes kept emerging:

• Under the Affordable Care Act, mental health benefits will differ state to state.
• The American Psychiatric Association has already written a letter to The Department of Health and Human Services over concerns that states would judge network adequacy for psychiatrists included in QHP [qualified health plans] networks on the basis of the number of psychiatrists in a network, as opposed to the number of days it takes for a patient to get an appointment with a psychiatrist.”
• If your doc prescribes a drug that is not in ‘the formulary,’ patients are certainly free to file an appeal (much the way most insurance companies demand today) so it will be covered. “The HHS declined to order formularies in QHPs to adhere to the Medicare Part D requirement that all drugs in 6 “protected” categories be available. Those 6 include antidepressants and antipsychotics.”

Combine the info from the first and third bullet points, and the sum is that one state may offer access to 250 ‘covered’ drugs while another could offer over 700.

It is worth noting that those three points above are being broadcast by a constituency that has a lot of skin in the game.   And, nothing above is surprising, really.  Typical red tape you’d expect to come across when dealing with any insurance plan.  So, it’s understandable why mental healthcare workers aren’t enchanted with these things.

To be fair, I did visit a few right-wing/I Hate ObamaCare news sites and blogs as well.  While I was looking for info specifically related to opinions on the Affordable Care Act as it pertains to mental illness coverage, there was a pervasive undercurrent of a lack of understanding of how the US Federal Government works in general.  I state this not for any partisan reason, but to call out that I am suspect of the information I was able to uncover.  Basically, the takeaway from those sites I visited is that expanded mental health coverage under the Affordable Care Act will put a serious strain on mental healthcare providers, due to the approximately 60 million new patients who will become eligible for mental health treatment.  The CEO of behavioral health services for the Henry Ford Health System stated that the influx of new patients from the health law would strain the nation’s mental health workforce. “We now worry that we [will] have the providers and the delivery system to take care of them,”  I could find no mention of how those opposed to the Affordable Care Act would remedy this particular problem.

Finally, I visited NAMI (National Alliance on Mental Illness).  They provide a very useful FAQ and downloads to help those with mental illness navigate the coming changes the Affordable Care Act will bring.  One item I am particularly happy to see is a Policy Maker’s Toolkit.  For the laypeople among us, it’s a small glimpse into the considerations that need to be made when making mental health policy decisions.

Bottom line:   I was expecting to find at least some controversial ‘stuff’ when researching this topic.  Truthfully, I found nothing I didn’t already expect.  The worst thing that I can see from the amount of research I had the time to do is the Affordable Care Act does not set a nationwide, uniform standard for determining what kind of coverage benefits each level should include. That decision will be left to the states, a point of concern to some healthcare-advocacy groups.  Quite frankly, it is a concern of mine as well.

In the end, let’s not forget this is a fledgeling program, and like the 787, it’s going to need to work out the kinks so it can truly fly.  From a personal perspective, I am happy 60+ million Americans will finally have access to mental healthcare.

It’s about time.

Back From The Bin

“Check in with yourself and communicate when you think you’re starting to slide into a depression, mania or mixed state.”   I even preach that gospel on this blog. Sure, OK.

It would have been great if I’d taken the advice.

I spent a week cooling my jets in the hospital because I let things go a bit too far and entered a mixed episode.  Thankfully, a change in medication that was ordered the week before the hospitalization started to work while I was in The Bin. It shortened my stay and I am home now, and on the mend.

For those who aren’t familiar with mixed episodes, it’s where elements of both depression and mania are present at the same time.  The Vivien Brand of Mixed Episode inevitably involves depression with severe agitation.  That means instead of sitting in a corner crying, I am not sleeping, running around doing everything with a heavy hand, being overly agitated with the universe and everything in it  and crying.

Working through one of these mixed states is pretty hellish.  Depression meets adrenaline!  Filters be damned!  Everything is worthless and annoying! And nothing is sacred. Nothing.

I’ve agonized over how I should write about this experience. Do I satirize the whole ordeal, using my razor-sharp Mixed Episode Witt that had my husband and son laughing when they would visit me?  Do I describe the impatience and generally unkind Mixed Episode Agitated Thoughts I had toward my Club Mental Health cohorts?  Do I tally and publish the number of times I sat in my room and cried ’cause there’s no putting the brakes on Mixed Tears?

Well, no.  That’s the point  These damn mixed episodes are just so jam-packed full of emotion and mayhem that I really can’t compose a meaningful post within my self-imposed 1000-1200 word limit.

American Hotel, Amsterdam (Oh, the irony!)

But, I must say this.  For those keeping score, you will no doubt have noticed the hospitalization this past week took place in The Netherlands while my previous stay in 2010 took place in the US.  Both facilities were dedicated mental health hospitals for the not-so-insane.  The experience here in NL, however, was a night and day difference from what I experienced in the US.  Here, I wasn’t locked on a ward, I was given my own room and my shoelaces weren’t taken from me.  It was more along the lines of a hotel for crazy-ish people.  At no point did I feel my dignity was compromised or I wasn’t being respected as a person.  Maybe it was just the crap hospital I was admitted to in Kirkland, WA (Google away…) that handles their clientele inappropriately, but it’s been my overall experience mental health here is handled with much more dignity and grace and less stigma than I experienced across the pond.  So, in my next edition of ‘Round the World for the Mentally Ill, I will have to give The Netherlands accommodations more stars than those in The States.

I suppose when you are Bipolar I and didn’t treat the entire spectrum of the illness for over 20 years, extended periods of extreme stress are bound to put you in the hospital, if you don’t ask for help when it all starts to go bad.  OK, fine.  Lesson learned.

Mixed episodes, how I do not love thee.

More Big Problems With Big Pharma: Clinical Trial Information Publication

Pills (white rabbit) (Photo credit: erix!)

Did you know that approximately half of all clinical trials conducted and completed are never published in academic journals and trials with positive results are twice as likely to be published as others?

And:

In 2007, a law was passed, saying all trials in the U.S. on currently available treatments must post their results to clinicaltrials.gov within a year of completion. Everyone rejoiced… claiming the problem was fixed. But nobody audited to see if the rules were followed, and in 2012 it was found that four out of five trials had ignored the law. Despite very poor compliance, no fine has ever been levied for failure to comply with this law.

[Underline is mine.]

If you’re a regular reader of my blog, you’ve already heard me talk on this topic.  I’m posting about this subject again because this past week, Dr. Ben Goldacre once again surfaced to promote his new book and remind the public that doctors really are prescribing blind.

If you’re still skeptical, consider this:

A doctor today who qualified in the 1970s is basically self taught with respect to almost all the medicines they prescribe. Medicine has changed entirely around them, through their career. We need to be better at future proofing medics, and teaching them how to find reliable sources of information. When you ask doctors “how do you know” which treatment is best, the answers are worryingly variable. “It’s what the doctor in the office next door told me” “I saw a drug rep” “I read one trial” etc. We need to develop better systems for disseminating evidence, as we currently rely on legacy systems such as journals and conferences, and also, worryingly, approaches not entirely dissimilar to oral traditions.   This means we carry on using things that aren’t so great, but also we’re slow to take up new treatments. Remember, the first social network theory paper, on diffusion of innovation, was done in the medical profession. It’s a real problem.

I’ve said it before and will say it again.  The, “I had a visit from a drug rep,” is something that especially concerns me.  When the physical evidence in the doctor’s office points to a recent visit from a rep hawking the drug-of-the-moment, i.e. an Abilify clock in the waiting room, yellow and blue umbrella by the door and a Bristol-Myers Squibb pen in hand as they write the prescription – it’s pretty certain I already know which drug I’m leaving with a ‘script for.  But, let’s not be so pessimistic for a moment.  “…marketing…can easily be ignored by any good doctor. When the evidence on what works is systematically distorted, when trial results are withheld, then nobody—not even the best doctor in the world—can truly know which treatment is best.”

Very true.  And to be fair, not all doctors are mesmerized by drug company swag. Dr Richard Lehman:

It is a scandal that doctors like myself often prescribe treatments without knowing their true benefits and harms, because research evidence from human trials has been withheld. That means that over my 35 years as a GP, I have unintentionally spent large sums of NHS [UK healthcare system] money on treatments that did not work, and some patients have suffered avoidable harm. We need immediate access to all the data relating to all the drugs and devices which we use on millions of people every day.

What your prescribing doctor needs is all of the applicable information.

Dr. Goodacre and several physician colleagues have founded a petition/initiative called AllTrials , aimed at mandating all drug trials past and present be registered, and the full methods and the results reported.  It calls on governments, regulators and research bodies to implement measures to achieve this goal.  If you’re intrigued, the Missing trials briefing note that is found on the AllTrials website is a good place to start.

The petition, although at the time I wrote this post had only 39,824 signatures, has an impressive list of organizational supporters.  This didn’t seem like much momentum to me, but then I stumbled across the commitment GSK made to supply the results of all their clinical trials. GlaxoSmithKline, let’s not forget, in late June 2012, was ordered to pay $3 billion in a fraud settlement for shenanigans such as, “…employing tactics aimed at promoting the use of the drug [Paxil] in children, including helping to publish a medical journal article that misreported data from a clinical trial.”  So, GSK signing on to participate in AllTrials should rebuild their image and make supporters of AllTrials happy, right?

Hold the Applause.  GSK doesn’t deserve any kudos just yet.  (After losing the last game to the tune of $3 billion, did you really think they were going to play fair in the first inning of AllTrials?)  But, they are playing.  They’re still in the game.  And that says something.

Yes, maybe this post is another self-indulgent rant, but things need to be change.  As an individual who has to take medication for the rest of their life to control their condition, it’s frightening to see how I am literally held hostage by Big Pharma’s antics.

Updated and Related:

A few hours after I hit Publish, I came upon this article from Time: How Our Web Searches Could Expose Drug Side Effects.  Self-report side effects sites have been around for a while, but a group of researchers at Stanford University School of Medicine and Microsoft Research are taking a different tact.  Why not look at the actual search habits of patients to determine what side effects, potential drug interactions, etc they are keying in on?  If doctors and patients aren’t getting all of the clinical trial information, doesn’t it then make sense to ask the actual guinea pigs what’s going on?  

 

 

References

Live Chat with Ben Goldacre: How Bad is the Pharma Industry – The Daily Beast, March 5, 2013, 11:00AM EST

AllTrials - An initiative/petition aimed at mandating all trials past and present  be registered, and the full methods and the results reported.  It calls on governments, regulators and research bodies to implement measures to achieve this goal.

Truth About Your Medicine: Ben Goldacre on How to Reform the Pharmaceutical Industry – The Daily Beast, March 4, 2013

Another Psychiatric Med Debacle: Glaxo Agrees to Pay $3 Billion in Fraud Settlement - Manic Muses, July 4, 2012

Promises of Transparency?  Hold the Applause – British Medical Journal, March 6, 2013

How Our Web Searches Could Expose Drug Side Effects - Time Magazine, March 7, 2013

F.D.A. Requires Cuts to Dosages of Ambien and Other Sleep Drugs – NYTimes.com

I am thankful I live in The Netherlands where this madness hasn’t caught on. Seriously, those who need regular sleep meds to manage their condition, have a  talk with your doc about concerns you have with changing doses. It may be a good idea for some, but for others it could lead to using potent ‘chasers’ to get the same kick to get to sleep.

http://www.nytimes.com/2013/01/11/health/fda-requires-cuts-to-dosages-of-ambien-and-other-sleep-drugs.html?partner=rss&emc=rss∣=tw-nytimes&_r=0

Ketamine: Leading the Way Toward Fast-Acting Antidepressants

I realize it is too early but I will ask the question anyway: could this drug possibly be used to safely treat bipolar depression without inducing mania?

http://healthland.time.com/2013/01/08/ketamine-leading-the-way-toward-fast-acting-antidepressants/

Is There Now Evidence Withdrawal From Antipsychotics Can Induce Psychosis?

For those who aren’t regular readers of my blog, I have been struggling to quit Abilify – a powerful antipsychotic medication – without success.  This has been a frightening, long and drawn out process for me, since the withdrawal symptoms I’ve experienced every time I have tried to quit this drug inevitably included a mild psychosis.  What is even more disconcerting is I never had any symptoms of psychosis until I started taking Abilify.

Last night I received a reply from a gentleman named Ed to one of my former posts: Abilify Withdrawal – Round 3: Abilify Wins and Antipsychotic Dependence. It is a very thoughtful piece from a person whose son had a psychotic break after trying to quit antipsychotic medication.  If you read Ed’s comment and follow the links he provided, it seems there is  now evidence  in a just published study that withdrawal from antipsychotics may lead to a psychotic episode.

Ed’s Comment to Abilify Withdrawal – Round 3: Abilify Wins and Antipsychotic Dependence:

I think that an answer can be found in the below post that I made on the Madinamerica site. Why isn’t the Mt Sinai report the “smoking gun”? Please see:http://www.sciencedaily.com/releases/2012/08/120813103250.htm. Although the intent of the research published in Nature Neuroscience was to make antipsychotics more effective or to suggest a new avenue for drug development, the implication of the findings is that chronic administration of antipsychotics creates a dopamine supersensitivity, and hence a vulnerability to psychosis on discontinuation, that is far more sinister and likely than anything I have seen to date. This report was released in August, but I don’t see the reaction I would have anticipated. If this report does not indicate that chronic administration of antipsychotics should never be used except in the most extreme of cases, I’m missing something. The findings, as I see them (I’m not a scientist) are that chronic administration of antipsychotics results in elevated HDAC2 which suppresses genetic expression of the mglu2 receptor. Glutamate dysfunction has long been suspected to be relevant to psychosis. Philip Seeman (the discoverer of D2), who is one of the most renowned researchers in pharmacology showed the dramatic effects of mglu2 activity in 2009: http://www.ncbi.nlm.nih.gov/pubmed/19084908. In short, the the under activity of mglu2 (by implication…Dr Seeman was using mice with no mglu2) results in dramatically greater d2 recepors in high state. This is dopamine supersensitivity or tardive psychosis. Am i missing something? Why am I not seeing a mushroom cloud? Didn’t the Mt Sinai group provide the smoking gun for what Robert Whitaker has been suggesting? In a nutshell, even if you were never psychotic, if you try to discontinue antipsychotics, you are at a high risk of becoming so? Please make this an issue.

After reading both links provided by Ed,  the latest research is very damning, indeed.

Although the smoke from this one is still filling my office, the biggest hurdle I see to this study being seen as a smoking gun is the need at present for a lot of inference to connect the dots. Those of us who have experienced the adverse effects of trying to quit antipsychotics, even laymen such as myself, won’t have much trouble seeing this study for what it potentially is. I think the rest of the world will need the lines drawn in the sand  more clearly before there is widespread acceptance that antipsychotic withdrawal can induce psychosis.

One of many reasons acceptance may be delayed is, from what I have seen, psychiatrists in general have blind faith in the efficacy and safety of antipsychotics for people suffering from Schizophrenia and Bipolar Disorder, and have the unfortunate tendency to prescribe this class of medication as a prophylactic instead of in response to a psychotic episode. Take my experience with the two psychiatrists currently handling my case (I have Bipolar I). When I arrived in their practice, I was already taking Abilify prescribed as a cautionary measure by my former psychiatrist. I was only three months into treatment and I was already having adverse effects. But the three psychiatrists all believed Abilify to be ‘safe’ and a great method to rely on to insure psychosis would never happen. No one had bothered to note that I had never so much as experienced even a mild psychosis in my life. It’s been an outright battle to get my current docs to understand just how bad for me taking Abilify has been. It has taken one year handling my case, my bringing them countless printouts of studies and patient experiences, three exams from my GP for weight gain related medical problems and three bouts with mild psychosis for them to understand just how detrimental to my mental and physical health this drug has been. Finally, my two lead psychiatrists have consulted with their colleagues, including the head of the Psychiatric Department of the affiliated hospital, about all the withdrawal problems I’ve had so far. The good news is I now have several psychiatrists in my corner who believe that this medication did, in fact, bring on a mild psychosis whenever I tried to stop taking it. The bad news? I am seen as an ‘isolated case.’

Where do I go from here? Well, there are only three viable options: staying on a very low dose of the med in perpetuity, titering down to an even more ridiculously low dose than 2.5mg every other day or quitting cold turkey and dealing with the fallout. The consensus between all the psychiatrists and myself is to choose the third option and go to bed until the withdrawal is complete, which could take one to 1.5 weeks. But, there is one, large caveat. My family and psychiatrists need to be on standby in case I once again enter a withdrawal psychosis.

The need for a number of people to continually monitor my behavior for the next two weeks and be on 24 x 7 standby in case I have a psychotic episode seems surreal. It makes me anxious because logically I should expect to go through another bout of withdrawal psychosis. And, it makes me angry I was administered this class of med in the first place. When I was placed on Abilify I was not in a full-blown mania, it was done as a protective measure and my then-treating psychiatrist assured me of its safety. Had I known there was any chance of actually becoming even mildly psychotic, well, I would never have swallowed the little, blue pill. I would have stayed in The Matrix of mood stabilizers only.

Throughout the last year, we have seen a wealth of articles spring up in some unlikely places calling out the misuse and abuse of antipsychotics. Once again this past week, an article ran in the New York Times.  A Call for Caution on Antipsychotic Drugs gave Dr. Richard Friedman (a professor of psychiatry at Weill Cornell Medical College) an arena to reach the layman population, underscore the seriousness of this class of medication and condemn casual use for conditions unapproved by the FDA (such as insomnia and use in children).  He is right, of course. But deeper conversation and action are sorely needed. In light of the new studies being published, the immediate follow-on conversation needs to be that psychosis may actually be brought on by the very class of medication invented to prevent it.

I only have experience with Abilify. I cannot speak for anyone else but myself.  Given my experience, and since the 5^th and 6^th most prescribed drugs in the US are antipsychotics, psychiatrists need to be more accepting of patient claims that these drugs are causing some very serious side-effects. There needs to be a cold, hard look by the psychiatric establishment at the tendency to use this powerful medication as a go-to prophylactic instead of a treatment for a well-defined, serious condition that already includes psychosis. Off-label use needs to stop. There is a dire need for further studies around psychosis associated with the use of antipsychotics. There needs to be more dialogue around and research into the entire class of antipsychotic drugs.

Ed and I have been corresponding outside of WordPress and we would love for this conversation to continue. Please feel free to post in the comments section and / or reblog this post.  

Abilify Withdrawal – Round 3: Abilify Wins and Antipsychotic Dependence

Abilify wins.

I put up a tough fight, but in the end, with serious commitments looming, I decided to surrender and let Abilify have this match.

Titering down very slowly and using the every-other-day method really did work. I was down to 2.5mg every other day and had great results doing this for two weeks.  It was at day five of being completely off the med when I noticed the subtle withdrawal signs creeping in, and by day seven I made the decision to go back to the 2.5mg every other day until the end of next month.

I don’t want to discourage anyone  who is also trying to remove this drug from their regimen.  Keep at it, and do it safely.  This is just a really tough nut to crack.  For me personally, there were two extremely stressful events that occurred just two days apart shortly after I stopped taking Abilify altogether.  It was just bad timing.

Or, was it?

Let’s get technical; what I was sliding into was  a mild psychosis.  Racing thoughts, mild paranoia, mild emotional changes, mild personality changes.  Even my husband noticed.  Wait – isn’t this why my dose of Abilify was increased late last winter?  Why, yes, it was.  So, after I stabilized on 2.5mg every other day again, I researched whether or not antipsychotic withdrawal can provoke psychosis.  Lo’ and behold, an abstract with the exact title appeared among my hits.

Evidence for a rapid onset psychosis (supersensitivity psychosis) following clozapine withdrawal was found and weaker evidence that this might occur with some other antipsychotic drugs. Some cases were reported in people without a psychiatric history. It appears that the psychosis may be a feature of drug withdrawal rather than the re-emergence of an underlying illness, at least in some patients. Meta-analyses of withdrawal studies have suggested that antipsychotic discontinuation may also increase the risk of relapse over and above the risk because of the underlying disorder, but not all individual studies show this effect. Mechanisms may relate to brain adaptations to long-term drug use but data are sparse.

Not conclusive but there’s enough there to make one wonder, especially since I am so sensitive to Abilify in the first place.

Of course the big question is whether what I experienced was indeed withdrawal or my manic-depression rearing its ugly head again.  I am, after all, Bipolar I.  Antipsychotics reduce the level of dopamine so when the drug is cut off the brain needs to get used to making it again.  Quite a tall order for a brain that can’t regulate itself in the first place.  So, were the symptoms of mild psychosis due to my brain trying to kickstart dopamine production again?  It turns out there is a set of three criteria to determine whether or not the symptoms experienced are a result of withdrawal:

• [Keeping in mind the half-life of the drug] The problems begin immediately after reducing or stopping the drug. (If the original problem has been treated, it should be some time before the symptoms come back, if ever.)
• The symptoms disappear if you go back on the drug, or raise the dose.
• You are experiencing new symptoms as well as some of those that were a feature of your original condition (flu-like symptoms as well as depression, for instance).

[The above information came from a wonderful pamphlet from www.mind.org.uk called, 'Making sense of coming off psychiatric drugs.'  It is highly worth the read, covers many types of psychiatric drugs (not just antipsychotics) and can be downloaded as a PDF booklet for 1GBP here.]

Bingo.

Withdrawal.  Again.

As it turns out, the half-life of Abilify is 3.5 to 6 days, so the onset of my withdrawal symptoms completely fits the profile.  My symptoms disappeared after beginning the drug again and the personality changes and paranoia completely evaporated within 36 hours of my jumpstart, 5mg ‘superdose.’

Being armed with this knowledge makes me all the more anxious to cut antipsychotics out of my regimen entirely. I understand that should I be unable to manage mania or psychosis in the future I may have to return to using this class of drug.  The plan for now, however, is to return from an extended trip at the end of September, cut the 2.5mg dose every other day into even smaller slivers and take to my bed if necessary to quit Abilify once and for all.

The moral of the story is antipsychotics are very serious medications and should not be taken lightly.  Nor should the withdrawal some people experience.  Patients need to be their own advocates when making decisions regarding to take or not to take this class of medication and the Misuse and Abuse of Antipsychotics needs to be addressed.

As I said at the beginning of this post, if you’re reading this and trying to eliminate antipsychotics from your cocktail, do it smartly.  Consult with your physician, educate yourself about the drug you are taking, it’s half-life and the potential withdrawal symptoms.  Don’t rush.  And if it doesn’t turn out the way you hoped the first time around, don’t be afraid to surrender, regroup and try it again.

Abilify Withdrawal – Round 2

Vivien-1, Abilify-1.

Here’s a brief update for all those interested in the trials and tribulations of attempting to quit Abilify.  (Round 1 was documented here.)

The alternating-days-with-a high-and-then-a low-dose-to-titer-down approach is working its magic.  The lowering from 7.5mg to 5mg phase was successfully completed with no further orientation issues.  Balance is normal, riding in the car uneventful. There has even been some weight loss.  All I can say is, “Hooray!” where that is concerned.  I also noticed mental acuity is beginning to return.   I didn’t realize how medicated I was feeling until I was on the 5mg dose steadily for a week straight.  While on the 7.5 dose, I was in a bad place whenever reasoning through a problem required multiple steps – one particular incident that ended in tears involved planning our vacation and having to reason through the date changeover of a red-eye flight through multiple timezones.  I used to be able to do all of the math in my head within seconds.  Now, on 5mg I can at least recall the dates we will be in certain locales and calculate how long we will be in each port during the journey.   There is a big difference for me with just a 2.5mg adjustment in this medication.

Overall, with the lower dose of Abilify I have more energy and a renewed desire to participate in life.  I want to go for a walk, I want to be around friends and chat the night away.  I want to sit through films.  I want to read that book.

Which – there has to be a potentially dark side to this, right? – leads me to wonder if I may be courting a manic disaster when I’m finally down to a very low dose.  At present I am uncertain if my renewed interest in my to-do list is the product of the medication cloud lifting or if a hypomania is looming just on the horizon.  I know the signs, and I’m starting to stack up books to read, create quite a list of redecorating tasks and am becoming just a tiny bit anxious I cannot provide concrete deadlines when each of these things will be completed.   Right now, I’ll chalk it up to med numbness subsiding but will have a talk with my husband tonight about keeping an eye on my activity level.

I’ve now begun the next phase in dosage decrease, alternating between 5mg and 2.5mg.  Today is day three and so far, I haven’t had any problems.  If anything, I am feeling more awake.  At 7.5mg, caffeine just stopped giving me any jolt at all.  Now, caffeine is one again doing it’s job and that 2PM cappuccino fix is getting me through the rest of my day.

So, all in all I am cautiously optimistic the next two weeks of 5mg/2.5mg to 2.5mg will go well.  And, if anyone out there is considering titering down from Abilify, I can cautiously recommend you try the every-other-day method.

Pedaling Into the Wind – Abilify and Weakness

What are our Drs always telling us?  Exercise is essential for a healthier mind.  OK.  My husband and I both got a new bicycle this past weekend.  Cycling.  That’s got to be good for you.

So, we set out yesterday for our first real ride.  All we wanted to do was pedal to the lake (not far at all – I usually walk it), go half way around (not terrible far – I can walk it) and come home.  Much to my embarrassment, I had to stop a few times along the way.  And, I have an electric bicycle.

I was doing fine when we started out…honestly!  It was fun!  Then, the wind picked up.  In all fairness the wind was sustained at 30km/hr, gusting to 40.  Challenging, surely.  But the amount of muscle drain I felt not just in my legs but all over my body was really concerning. It was more than just being out of shape.  For most of the ride I kept thinking at a pitch just below panic, “What is going on?”

After I got home, although I had just been out riding, I was experiencing a chill.  Well, that’s not surprising.  I have that freakish Abilify side effect where I can’t regulate my body temp very well.  It’s pretty pronounced now that I am on 7.5mg instead of my usual 2.5 (yes, I am also freaksihly sensitive to this med as well.)  Oh.  But, wait a minute…isn’t one of the less common side effects of Abilify muscle weakness?  Off to Google I went.

Sure enough, lack of strength, weakness and muscle weakness have been reported and are listed one way or another in the US Abilify drug insert information and on ehealthme.com.  Now, bear in mind the latter site is meant for consumers to self-report adverse effects so the results are far from those gleaned in controlled studies. In some respects, however, this data is more helpful and gives me greater peace of mind.   This chart alone (from ehealthme) is worth 1,000 words:

Time on Abilify when people have Lack of strength, muscle weakness, weakness * :

	< 1 month	1 – 6 months	6 – 12 months	1 – 2 years	2 – 5 years	5 – 10 years	10+ years
Lack of strength, muscle weakness, weakness	45.45%	30.68%	10.23%	6.82%	5.68%	1.14%	0.00%

*  If anyone from ehealthme.com objects to the use of the chart, please contact me.  I’ll remove it immediately.

 

So…how to approach this with my Drs.  First off, my Drs do not believe Abilify causes weight gain.  They use some antiquated PDR-like bibe-looking thing  from 2008 as their go-to reference.  It does not list weight gain.  My hips, however, list otherwise.  Second off…well, I’m in a bad place here.  My Abilify dose was jacked up to 7.5 from 2.5 because I tried to wean off and experienced a mild psychosis.  I have a lot of stress, and I mean a lot of stressful events, coming up in the next six weeks.  Not only don’t I have Drs who believe the latest package insert warnings, but now is not a good time at all to switch antipsychotic medication.

But, enough of my whining.  Are there any of you out there who have experienced severe weakness while taking Abilify?  I’d love to know.  So when it is time to address this with my Drs I can say with honesty, “…and I know of others who’ve had the same issue.”

Post Prozac Nation: The Science and History of Treating Depression

Lengthy but highly interesting article from the New York Times
http://www.nytimes.com/2012/04/22/magazine/the-science-and-history-of-treating-depression.html?_r=2&smid=tw-nytimes&seid=auto