52 replies to this topic

[PtldFrank]

Hello everyone,

I'm a 62 year old male who's been on 60 mg of Cymbalta since about 2005, for chronic depression.  I have to say that the Cymbalta plus Remeron lifted my depression for many years.  Then they pretty much petered out.  The psychiatrist that prescribed these had moved to another city and I stayed on the drugs out of habit.

Finally, a year ago, I started up with another psychiatrist who quickly told me how hard it is to get off Cymbalta -- so they're not all clueless    Last year she helped me get off Remeron, which went very smoothly.

Today we start my Cymbalta withdrawal.  The plan is to take 10 months, yes 40 weeks, basically bead counting 5mg down for four weeks at a time.  The generics I get have 5mg "pellets" rather than beads.  I think this will work except for after the last month.  From what I've read in your forum even a jump from 5mg to 0mg can be pretty painful.  I'm sure open to suggestion.

My psychiatrist offered to have a compounding pharmacist mix up whatever doses I'd need, so maybe I can do that for the last 5 mg.

I'm going on Medicare in 3 years, and I'd love to have as few prescriptions as possible.  
 

[brzghoff]

PtldFrank,

 

welcome!

 

first things first, your doctor is a true gem! you are incredibly fortunate to have found a medical professional who understands and is willing to work with you. i am totally blown away! congratulations.

 

as for suggestions on how to handle the last 5 mg, is it possible to get a different generic that doesn't use pellets, but beads instead? or actually get the brand-name cymbalta? i know it is very pricey, but if you can, it is much easier to reduce the dosage with smaller beads. otherwise, i would recommend the compounding route. i wish more doctors would offer that option but they don't even seem to understand it is necessary. 10 months sounds like a very slow and steady taper, but others on here can provide more expertise. i didn't bead count. i didn't know any better. i did a quasi cold turkey reduction, dumping out half the beads of 30 mg caps on an every other day schedule for about a week or so - then off. it was extremely rough. its been 20 months since my last dose and i still wrestle with anxiety, but at a very manageable level. anxiety was not an issue prior to taking the C or when i was on it. we made friends once i quit. what a pal <sigh>

 

like you, i was on the C for 10 years - in my case, concurrent with lamictal. i will wean off it hopefully, within the year. just as you, i would like to be prescription free in the next year or two. i have been on one psychoactive drug or another since 1996 - and i am so over it!

[PtldFrank]

Thanks for your reply.

 

I've been on "brain" meds since 1991, mostly without much benefit.  Mostly antidepressants, and then anticonvulsants for seizures I've had along the way.  I'm trying to get clean of all of these if possible.  My psychiatrist, neurologist and therapist are in the loop together.

 

I hope to be down to the last 5 mg in October, so changing to real Cymbalta and doing a more gradual taper is possible. 

 

I also took a lot of Lamictal (700 mg/day) until I realized it was giving me pretty bad side effects.  I spent 14 weeks going off that (and not driving) in 2014.

[brzghoff]

i have been on 200 mg a day of lamictal since 2004. i think it likely tempered my withdrawal from the C - however, i can't imagine how much worse it could have been. it was bad.

 

how bad was your lamictal withdrawal? what can i expect? any suggestions? i fired my p-doc last year and currently get the 'scrip filled by my GP - both are clueless about weaning off psych drugs. my GP is happy to indulge my desire to wean and write the 'scrip needed to do so, but he isn't familiar with the concept. i am willing to wean slowly - as long as it takes. i am not on any other meds other than clonidine as needed to help with sleep and the supplement 5htp as needed to take the edge off an anxious day. i must admit i get no side effects from lamictal, of which i am aware. i just don't like being on something that puts me in withdrawal and that otherwise doesn't do anything for me. 

 

my whole "med career" was established by a p-doc who looks at drugs as a life sentence for the crime of situational depression. he was always happy to flip my 'scrip to the latest and greatest that was being hawked by the pretty young pharma reps. i experienced an effexor induced mania three weeks after he thought it would be a good idea to try something new. so he added depakote and eventually switched me to lamictal and the C. 

 

i want off

[fishinghat]

Welcome Frank. Your doctor is a gem and a rarity. I really like the sound of your plan. I am planning on weaning off the Zoloft I am on in the near future. My dr said when the time comes he would do a special formulation for me so I could wean slowly, (it comes in a single tablet). My insurance said they would pay 25% of the cost BUT the formulation places in town said the cost would run $1300 to $1800/mth. Ouch. I wish you better luck. I am going to get a set of mg scales and scrap a little off the tablet at a time.

[PtldFrank]

brzghoff,

 

I was taking Lamictal for epilepsy, and the big concern for tapering off was triggering a seizure.  That being said, the withdrawal process went very smoothly.  No trouble.

 

 

fishinghat,

 

Wow! $1800/mo. is a lot.  I didn't know what a compounding pharmacist might charge.  I may just count beads.

[kmrekl217]

Welcome Frank. Your doctor is a gem and a rarity. I really like the sound of your plan. I am planning on weaning off the Zoloft I am on in the near future. My dr said when the time comes he would do a special formulation for me so I could wean slowly, (it comes in a single tablet). My insurance said they would pay 25% of the cost BUT the formulation places in town said the cost would run $1300 to $1800/mth. Ouch. I wish you better luck. I am going to get a set of mg scales and scrap a little off the tablet at a time.

Fishing Hat,

Wait, a compounding pharmacist isn't a normal thing at a regular drug store?

[fishinghat]

No Kmrek

 

Your regular pharmacist gets the prescription from your dr and goes to the shelf and picks out the right medicine already made - up and ready to go from the manufacturer.

 

A compounding pharmacist gets a special order for a special blend of medicines from your dr. He then gets the raw ingredients from the manufacturer and measures and weights the right amount of each medicine into a capsule for you to take.

 

For example my dr wanted me on a special formulation for aspirin for my heart. The compounding pharmacist was going to order in the aspirin and make the special blend for me but unluckily it turned out to be too expensive ($700/mth, ouch).

[silverseed72]

I started me weaning off process in December. I am down to roughly 10 beads every other day now. It has been overall ok, I have had a bad day or 2, but I think I am doing better than average.

[fishinghat]

Your doing great. Hang in there.

[gail]

Hi Silverseed,

Indeed, you are doing better, much better than average.

There must be an angel standing by you...♥

[PtldFrank]

I just finished 4 weeks at 50mg and today I begin 4 weeks at 45mg.  This is booooringly slow, but boring is a good thing for Cymbalta withdrawal, I think.

 

I haven't noticed any problems other than a slightly stiff neck, but that's probably due to hunching over my laptop too much.  My mood(s) haven't changed for better or worse.

 

So far, so good!

 

Frank

[fishinghat]

Good news Frank. Hang in there.

[PtldFrank]

I haven't posted for 6+ weeks, so it's time for an update.

 

After 4 weeks on 45 mg Cymbalta, I was in a deep depression.  I called my psych., even suggesting I was ready for ECT -- I was that far down.

 

She suggested, rather, that I go back onto 2.5 mg Abilify while maintaining Cymb. at 45 mg.  After a few days I was feeling much better.  After 2 weeks I'm doing quite well, thank you.

 

So I've resumed reducing Cymbalta at 42.5mg for 2 weeks, then 40 for 2 weeks, and so forth -- reducing by 2.5 mg every 2 weeks. 

 

The 2.5 mg number comes from the 5 mg "pellets" that are in my generic Cymbalta capsules.  Although each pellet is coated, they're pretty easy to cut in half.

 

My main concern right now is that Abilify has only ever helped me for about two months and then it's petered out.  I can only hope at this point.

 

Frank

[fishinghat]

Hey PF

 

You hit the nail on the head. Abilify is designed for short term help in addition to your regular AD. It does peter out in a few weeks. Most of my drs put their patients on it during withdrawal until stable and then very slowly lower it over a period of time. I have been told by my drs that one should come of the Abilify before finishing their AD withdrawal. I don't know if that is true or not but I will see what I can find on that.

[PtldFrank]

The last time I tapered off of Abilify was last January, just before beginning my Cymbalta taper.  When I got down to nothing, I got a bad case of restles legs-and-arms (akithesia?).  It was so bad that I could'nt sleep for nearly two weeks and put myself back on a small dose (0.625 mg) of Abilify.  Basically a 5 mg pill cut into eights.  That fixed the problem.   I'd never gone through sleep deprivation before -- wow -- it does drive you crazy!

 

So I get to look forward again to Abilify withdrawal.  Whoopee!

 

Frank

[fishinghat]

That "restles legs-and-arms" is called Restless Leg Syndrome" (ELS) and is common with people who have anxiety, during withdrawals and in old age and is linked to excretion of magnesium and calcium (used in muscle contractions. People who suffer with RLS usually have troubles with heartpounding, skip beats (PVS) and heart racing (again all related to muscle contraction). Yje dr usually will test a patient for blood calcium and magnesium levels and may even tell the patient that they are normal. BUT the research shows that if the calcium or magnesium is less than 20% above its lower limit t can still be causing these events.

 

Just incase you are curious.

[PtldFrank]

I'm pretty sure this is drug related.  From what I've read RLS doesn't affect the arms (I get an itchy torso to boot).

 

I first got RLS while taking Remeron (Mirtazapine).  It would hit a couple hours after I took a dose and last for about an hour.  But it wouldn't wake me if I went straight to sleep after taking a pill.  Go figure.  I remember one time in a movie theater having to stand (and squirm) in the back row because I couldn't sit still.

 

I'm glad those days are over.

[fishinghat]

From Wikipedia reference below, et al.
 
Restless legs syndrome (RLS) is a neurological disorder characterized by an irresistible urge to move one's body to stop uncomfortable or odd sensations.[2] It most commonly affects the legs, but can affect the arms, torso, head, and even phantom limbs.[3]

3.   ^ Skidmore, F M; Drago, V.; Foster, P S; Heilman, K M (2009). "Bilateral restless legs affecting a phantom limb, treated with dopamine agonists". Journal of Neurology, Neurosurgery & Psychiatry 80 (5): 569–70. doi:10.1136/jnnp.2008.152652. PMID 19372293.

 

I had about half of that and you are right, it sucks, thank God it is gone.

[TryinginFL]

I have had RLS for about 30 years - it NEVER went away and I was not on any of these miserable drugs.  I take Ropinirole for this

 

It can get so bad that I have occasionally had to take 2 in one day (normally 1 before bed).  I have had it so miserably that my arms, legs and it seems as if my whole body is going bonkers   (Those who have had it know exactly what I mean)

 

I congratulate anyone who has been able to get rid of it!

[fishinghat]

Liz, if I remember right you can't take magnesium, right?

[TryinginFL]

Fh, that is correct...

 

Anything that is not normal for others, is normal for me

 

It caused extreme anxiety

[fishinghat]

That would explain why the RLS is so bad with you. Have you ever had your blood levels checked for magnesium or calcium? I bet they are low or on the low side of normal. Just curious.

[TryinginFL]

Not to my knowledge, FH

 

Never knew to ask about that - I am not up on these tests...

[fishinghat]

You know Liz the next time when you are at the drs I would ask for a CMP (Complete Metabolic Panel). It will include the magnesium and much more. If you are comfortable send me a copy of the results, I would like to look at them (if you don't mind). 

[TryinginFL]

Thanks, FH..

 

Can't remember when I last had this done.  The only time I go to the Dr. is when I am sick ...  no regular visits 

 

Same with Dentist - only when absolutely necessary

 

 

Guess I am a wuss...

[fishinghat]

But a very nice wuss...

[emoothart]

Frank, I'd love to know how you're doing.  What dose are you down to?  Is the abilify still helping?

[FiveNotions]

Yes, ditto that ... how are you doing?

 

And Emoo, how are you doing?

[PtldFrank]

Hi all,

 

I know it's been a while since I checked in on this thread.  There's not a lot new to report.  I'm down to 27.5 mg per day and most things seem the same.  My rate is still to reduce by 2.5 mg (1/2 pellet) every two weeks.

 

Since the pellets are enteric coated and I'm cutting one of them in half for two weeks every month, there's a chance that the halved pellet won't digest properly and I won't get the exact dose.  But that's no worse than going down by a whole pellet every 4 weeks.  Subjectively, it feels like a smoother decline to reduce at 2.5 mg per two weeks than to reduce at 5 mg every 4 weeks.

 

I'm not going to worry about that.

 

As far as effects, I still get really depressed, but my talk therapy may be helping a bit.  I've been on ADs since 1992 and I'd dearly love to be free of them.

 

On the plus side, I think my tinnitus might be easing a bit.  It's really strong an hour after i take Cymbalta, and then fades.  It'd be great if it fades with dosage reduction.

 

I want you all to know that i really appreciate your concern.  That's a mood booster for me.

 

Frank