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5 Years Since I'm Off Cymbalta But...


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#1 shoshee10

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    I was forcibly removed from my Cymbalta by my insurance company, and although my therapist assures me I am not going crazy, I would like some additional support

Posted 01 October 2014 - 09:04 PM

I'm seriously wondering whether it is really over.  I had a long talk with my husband today and we realized that when I came off the Cymbalta is when things really started to go downhill for me.  Over the last 5 years I have had an "acute depression episode" twice.  Once after quitting Cymbalta and once this past December.  I had "major depressive disorder" (fancy talk for nervous breakdown) 3 years ago, requiring a week of inpatient care and a couple months of intensive outpatient care.  I still go to therapy every single week and the psychiatrist once a month.  I've had my meds switched around several times.  Nothing is working.  I have good times and then go spiraling down.  

 

What my husband and I are really wondering is whether or not a cold turkey withdrawal of Cymbalta could have created lasting effects for me.

 

Any info is appreciated!


#2 brzghoff

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Posted 01 October 2014 - 10:42 PM

first off, i am truly sorry that you have had to endure hospitalization and what sounds like very intensive outpatient treatment twice in five years. i hope you like your psych and therapist, its important for you to be able to trust them. i can relate to having to go off cymbalta due to the drug being dropped from my insurance plan's formulary. i had thought about getting off the C for awhile, but when i lost coverage, that decision was made for me. i had been on as much as 90 mg for ten years. i dropped down to 60 and then 30 mg within the period of a year and then after another year had a very short "every other day" taper before going cold turkey on may 15 of this year.

 

as for the C withdrawal being the reason for your major depressive episodes really depends on a number of things. were you put on the C originally to treat depression? its not improbable for a person to develop a major episode when coming off any anti-depressant. of course C withdrawal can take it to the extreme. some folks are prescribed cymbalta to treat pain and have no history of mental illness. but once they withdraw from the C, they have classic symptoms of depression and anxiety. others were prescribed the C for depression and/or anxiety and upon withdrawal experience terrible pain. if you had a history of depression or other mental illnes prior to taking cymbalta then that could be at play as well. i don't mean to batter you with questions, but the answers could help you and others consider all the dynamics involved. also, what do your doctors think? 

 

in my case, i was diagnosed with depression 8 years prior to taking C. i started with zoloft, then went to wellbutrin, switched to effexor and then two years later the psych decided i was bipolar and added depakote. 6 years later i was switched from effexor to the C and from depakote to lamictal. as a result, i have to recognize that some of the symptoms of withdrawal that i struggle with were covered up by the C and may not be totally rooted in the cold turkey withdrawal. i never had anxiety as part of my depression, nor at anytime while on the C or any anti-d, but it struck with a vengence when i quit C. i don't take any anti-d's now, only lamictal and just recently added clonidine to help with the insomnia caused by anxiety. i have been working primarily on using cognitive skills and mindfullness to get my anxiety under control.  i believe that while on the C i was too "numb" to develop anxiety even though i was engaging in some pretty irrational thought patterns. cymbalta is a pain killer - including mental pain. once i quit, bam! the anxiety hit hard and while the withdrawal certainly made it worse, i can't totally blame cymbalta for the anxiety in the first place. 

 

why were you prescribed cymbalta in the first place? was it originally prescribed for depression? if so, how long had the diagnosis been made before you were prescribed cymbalta? were there are anti-depressants or other psychoactive meds prescribed before you went on cymbalta? how long were you on it prior to coming off five years ago? what was your dosage? what meds have you taken since cymbalta? 

 

your second depressive episode could be rooted in your history of depression - or it could be due to cymbalta withdrawal - or both. dr stuart shipko is a psychiatrist who is a contributor at http://www.madinamerica.com he specializes in treating clients in various stages of ssri and snri withdrawal - especially cymbalta. he believes that the drugs are prescribed too often and without patients receving informed consent about what can happen, not only once they start taking them, but what might happen if they stop. he has his own interesting theories about the impact of withdrawal, but admits they are based on mostly anecdotal evidence from a very small sample. also, people come to him because they are having trouble getting off the drug. people don't come to him because they were successful.  i am providing links to two articles dr shipko wrote. on the surface, they don't seem encouraging, but he admits that other mitigating circumstances and mental health history appear to be a factor in his patients who present with symptoms months or even a year after stopping an ssri or snri. in other words, it may not be brain damage caused by cymbalta or other drugs afterall. 

 

 

http://www.madinamer...n-acknowledged/

 

http://www.madinamer...odds-revisited/


#3 shoshee10

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Posted 02 October 2014 - 01:03 PM

 

 

why were you prescribed cymbalta in the first place? was it originally prescribed for depression? if so, how long had the diagnosis been made before you were prescribed cymbalta? were there are anti-depressants or other psychoactive meds prescribed before you went on cymbalta? how long were you on it prior to coming off five years ago? what was your dosage? what meds have you taken since cymbalta? 

 

 

 

Brzghoff

 

Thank you so much for your informative reply.  I read the articles that you linked to and found them extremely thought provoking.  A little depressing considering that I have been taking all different meds for about 10 years now.  But knowledge is power and I'm grateful for the knowledge.

 

I will make this as short as I can.  At the end of 2002, both of my mother's parents died.  They died within 3 weeks of one another and my mother and aunt had to make the decision to "pull the plug" for my grandmother.  The day after my grandmother passed (she died 2nd) my aunt came to my grandparents house and started a fight over my grandparents possessions.  I was extremely close to my grandparents and the fight was extremely bad.  I ended up in a ball on the floor yelling "Stop" over and over and over.  I had always had problems with stress but I had never gone to this extreme before.  However, I refused medication from the doctor, figuring that I would eventually get over it.  I did however agree to see a therapist.  

 

For the next year or so, I began to have panic attacks and weird illnesses that would come and go.  Bad bouts of vertigo caused me to fall down my stairs on at least 2 occasions, a couple rounds of bad joint pain and other issues.  I went through a battery of tests including a brain MRI and everything was completely normal.

 

In early 2004 I was hospitalized with a high fever, severe joint pain, abdominal pain, vomiting, diarrhea.  Throughout the week in the hospital every part of me was tested.  I had gallbladder inflammation but not an issue for gallbladder removal.  Liver swelling - no diagnosis.  Tested for Lyme, toxoplasmosis, hepatitis, chronic fatigue - all negative.  My symptoms slowly resolved and I was discharged from the hospital with no diagnosis and a battery of negative tests.  

 

Shortly after all of this I began taking Lexapro.  My doctor felt that my anxiety was rising and never receding and each time my anxiety rose, I found a new "normal" which was no where near "normal".   I started to feel much better and calmer and all the weird illnesses stopped.  

 

In May of 2005 I started to taper off the Lexapro with a lower dosage and .5mg of xanax for emergencies.  But I was not successful in removing Lexapro entirely and by March 2007 I was taking 20 mg of Lexapro and .25mg of xanax.  

 

Insomnia had been a large problem all along and by April of 2008 we added Ambien and Requip for my severe Restless Leg Syndrome.  Various aches and pains with seemingly no cause were cropping up again

 

In Dec of 2008 we replaced xanax with klonopin which went relatively well and we played some with the Lexapro dosage.  By June of 2009, Lexapro was no longer working and we switched to Cymbalta 30mg for one week, then 60 mg.  In July, 2009 the Cymbalta was upped to 90 mg.  My insurance company denied the claim for the Cymbalta and the price was out of reach for me (we had adjusted my dosage with samples)  I chose to just stop the Cymbalta and went on Prozac.  Little did I know what the fallout would be. Problems that cropped up were:  When I wasn't completely manic, I was asleep - When I was manic I could barely speak because it was very difficult for me to find the correct words.  I sounded like I had a bad stutter My hands did not feel connected to my arms My head felt fuzzy, like it was stuffed with cotton, but it felt kind of buzzy too, like there was a bee stuck in the cotton.  I cried constantly, about everything, about nothing.  I had a headache, shoulder aches, backache. I couldn't focus on anything.  Hyperventilation  My eyes felt weird. I have no other description for this then "weird".  I felt nauseous a lot although no actual vomiting, Diarrhea. And also I had the "dropsies" so bad. Everything I picked up ended up on the floor. Passive suicidal ideation

 

 

My husband and I were dealing with some trying issues at the time (bad neighbors) and on September 15, 2009 I presented with stress uticaria (hives head to toe) and an acute depression episode.  At this point I went to and intensive therapy outpatient center for evening sessions so I could continue to work.  I was put back on Lexapro and the Klonopin was increased to 1 mg.  I was losing weight (YAY!) because I was barely eating from the stress (BOO)

 

August 2010 I had a severe panic attack that required me to go  to the hospital.  My medication was switched to Celexa and was brought up to 60 mg, and one year later we added 2 mg of Abilify

 

Monday before Thanksgiving of 2011 I have a nervous breakdown and was admitted to the psych ward for a week.  When I was in the hospital I was given Seroquel fro the week, but that was discontinued upon release.  I went home still on Celexa and Klonopin.  Then I began 3 months of intensive daily treatment at an outpatient facility and had to quit my job.  

 

In April of 2012 my husband and I moved to SC and i found a therapist and a psychiatrist that I really like. After a year I found a non-stressful little job at a little store and lasted 6 months before I had another acute depression episode and had to quit.  

 

Since I moved down here I have been switched to Prozac and my Klonopin is now at 2.5 mg per day.  I also take Trazadone to sleep, neurontin for my intersticial cystitis  I can't work, and anytime anything remotely stressful happens I go way over the top in my reaction.  I have days where I literally can't stop sleeping and days when I barely sleep even with the Trazadone.  I am almost always in a stressed state, even if it's minor.  I go to therapy every single week.  We were going to try to taper therapy to every other week, but I had a stresser, completely overreacted and the decision was made to stay in therapy every week.  

 

I have come to believe that it's possible that the Cymbalta and it's stunningly awful withdrawal have just done something to me.  Ever since then, things have been worse then they ever were before.  However, looking at my life on paper, things have never been better.  

 

I'm just frustrated.  I have contacted Knox Ricksen about a potential lawsuit, but even if that is successful it will not change the fact that I feel like my brain is completely fried.  

 

Sorry for the long story!   :) I think I answered all of your questions though.  Thanks for reaching out, I really appreciate it.


#4 FiveNotions

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Posted 02 October 2014 - 03:09 PM

Oh shoshee, you poor dear ... you have such a sweet, tender, loving soul ... my heart is breaking as I see you in my mind's eye, reacting to that family argument ... sending you cyber hugs!! :hug:

I've got to reread .. and re-re-read you post ... so much information, and so much ... too, too much for one person to be forced to deal with ... I am so sorry! :(   And I am so angry on your behalf ... :angry:

I don't know if all these issues after the crapalta can be blamed on it for sure ... I'm certainly willing to blame every single world / personal issue on the shit at this point ... :P

But you came off cold turkey, by the sounds of it, even though the Prozac was added in .. and it's been 5 years off for you ... after I go back over everything you've written, I'll do some research for you and will get back here with anything I find ...

It took a lot for you to write all of that ... thank you for sharing so much of yourself with us ... we'll do absolutely everything we can to help you ... you are not alone in this struggle ... and you are making a wonderful, positive step towards healing by joining us and talking with us.

Come here anytime you want ... to vent, cry, be angry, share the "positives" and the "negatives" ... did you see those threads that Carleeta started... the "positive events" and the "negative events" ? Two of our "hottest" threads ... :)


#5 shoshee10

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Posted 02 October 2014 - 03:58 PM

FiveNotions - I haven't seen those posts but I will go look for them.  Anxiety running high this afternoon so maybe I'll just look at the positive events one!   :)

 

I've been a long time lurker on the site, I had originally come and posted when I came off C.  It was cold turkey from a relatively high dose and the prozac was less then useless.  I'm going to do a little research as well, but would love to see anything you can find about long-term issues.  The articles that Brzghoff posted above were very interesting and I encourage everyone to read them.  There are some interesting theories about long term damage from SSRI/SNRI use.  

 

It's always good to have a project!   :D 

 

Thanks to you and Brzghoff   :wub: 


#6 Amysgarden

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Posted 02 October 2014 - 09:28 PM

My brain is not coherent tonight, so all I have to offer is hugs. Seems like we are all just puppets in a mad psychopharmacology experiment.

#7 FiveNotions

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Posted 02 October 2014 - 09:55 PM

Ding ding ding! Amy wins the "comment of the day award" ... :P


#8 shoshee10

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Posted 03 October 2014 - 02:25 AM

Amy I love hugs...thank you.

 

Five you crack me up!


#9 brzghoff

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Posted 03 October 2014 - 02:26 PM

shoshee:

 

my heart goes out to you - that kind of family turmoil is tragic. 

 

i shared those dr. shipko articles becuase they are a perspective we need to consider. however, i choose to believe that i will get through this. regardless of whether my longer term issues such as anxiety were caused by cymbalta, or just allowed to fester because i didn't "feel it" while on cymbalta, i now own it ether way and its up to me to recover. its normal and understandable to be angry, upset, sad and frustrated. there is a grieving process that is important to recognize in our recovery. many of us feel that we no longer "are" what we "were" but there are never any guarantees we would ever remain how we were regardless of whether cymbalta was in the picture or not. i also truly believe i can get back to where i "was" or even be "better" than i was before ;-)

 

i think we all have it within us. and that can be with or without other meds to assist. 


#10 FiveNotions

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Posted 03 October 2014 - 03:20 PM

Shoshee ... I apologize for asking these questions,are you taking the klonopin for anxiety right now? How long have you been on it? FH says that benzos aren't recommended for long term use, as they "poop out" ...

Are you still taking the Prozac? What dose? Also, how long have you been on the Neurontin and the trazadone, and what doses? Are you taking any other prescription meds? Any vitamins and/or supplements?

I believe the answer is yes, there can be long term effects from getting of ssri's, especially Cymbalta ... ThisMoment has said that he's been off 2.5 years, and still has "effects" ... tinnitus and a constant low-grade headache are the two that I recall ...

I've been busy with other stuff, so I've gotten side tracked from researching this for you. I'll try to devote time to it tonight. (Delay was related to a call I got about another job, it'd be totally work from home, and just 8 weeks, a temp gig, but 40 hrs a week, not sure I can handle that much work, but if I could drag through it, I'd earn enuf to pay 4 months of rent)

#11 FiveNotions

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Posted 03 October 2014 - 03:26 PM

Shoshee ... quick and dirty search, turned up this little gem ... comment on another site from a woman who discovered that Cymbalta caused her interstitial cystitis ...

http://www.dailystre...ymbalta-warning

#12 brzghoff

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Posted 03 October 2014 - 05:00 PM

Shoshee ... quick and dirty search, turned up this little gem ... comment on another site from a woman who discovered that Cymbalta caused her interstitial cystitis ...

http://www.dailystre...ymbalta-warning

 

 

guess what? i just looked up the meaning of interstitial cystitis... i think i had that while on cymbalta! i was just commenting in another thread, the topic about nocturnal enuresis. in my case, i had problems emptying my bladder all the way and had problems with recurring UTIs. cymbalta - as well as other ssri and snri drugs - can constrict our "plumbing" - as well as blood vessels. i first developed the problem while on zoloft and had it on effexor and cymbalta. so for some people with incontinence it actually helps. in europe cymbalta is marketed under the brand name yentreve for those suffering stress incontinence. 

 

since quitting i don't have that problem anymore. i had very high BP on both effexor and cymbalta. since quitting its dropped dramatically. 


#13 brzghoff

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Posted 03 October 2014 - 05:02 PM

FN- hope you get the gig! well, as long as it doesn't stress you out - but you seem to be doing so well i am believing in you!


#14 FiveNotions

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Posted 03 October 2014 - 08:45 PM

Thanks for the encouragement, Brzghoff ... I have been doing very well ... up until last Friday, when my simple 6 hour work day for the blind graduate student just totally exhausted me ... and I've been that way ever since ... part is, I'm sure, due to my kitty Sweetie getting sick and having to have him put to sleep ... but the real issue is the physical ... every single muscle, joint, and tissue in my body feels sore and lame ... Aleve isn't helping, and I'm even having a hard time walking normally ... probably need a massage like TFL gets ... I'm counting it as a post crapalta relapse week ... Thank God I didn't have to work for the grad student today ... I basically vegged out on the sofa, on here, and sleeping ... dragged myself out to have dinner with a friend, forced myself to be "up" for that, had a good time, but am now even more tired... it'll pass, but it's the worst I've felt in months ... luckily, the anxiety, that blew up due to Sweetie, is back under control ... but this old body of mine ... oy ... :unsure:


#15 FiveNotions

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Posted 03 October 2014 - 10:07 PM

Shoshee, how are you feeling now? I got home too late to do the research I promised, I apologize. I'll do it tomorrow. But I see that Brzghoff came to the rescue .. . with excellent info ... never ceases to amaze me what I learn on this forum ...

Hang in there! We're all in the same boat, rowing ourselves, collectively, towards healing and a better life ... and, may eli Lilly co and crapalta rot in Hell ...

#16 shoshee10

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Posted 04 October 2014 - 05:49 AM

Shoshee ... quick and dirty search, turned up this little gem ... comment on another site from a woman who discovered that Cymbalta caused her interstitial cystitis ...

http://www.dailystre...ymbalta-warning

 

Wow...just wow.  I printed that out to show my uro-gynocologist.  I have suffered with IC for awhile now.  I was formally diagnosed in October of 2011.  I have actually just ended a period of remission and am back to needing to go to the bathroom up to 14 times per day and a couple at night.  I have restarted my Pyridium, but it's been slow to kick in this time around.  I am supposed to go in for a cystoscopy to see if cysts have developed in the bladder yet.  However, until a couple days ago I was experiencing a remission and didn't want to do the test and risk it setting me off again.  However, now that I feeling like crap again, I'll be scheduling the test for the next week or so.  

 

I'm so happy to hear about the potential job Five!  I'm praying that you get it!  I feel certain that you will find a way to manage it.  


#17 shoshee10

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Posted 04 October 2014 - 06:30 AM

shoshee:

 

my heart goes out to you - that kind of family turmoil is tragic. 

 

i shared those dr. shipko articles becuase they are a perspective we need to consider. however, i choose to believe that i will get through this. regardless of whether my longer term issues such as anxiety were caused by cymbalta, or just allowed to fester because i didn't "feel it" while on cymbalta, i now own it ether way and its up to me to recover. its normal and understandable to be angry, upset, sad and frustrated. there is a grieving process that is important to recognize in our recovery. many of us feel that we no longer "are" what we "were" but there are never any guarantees we would ever remain how we were regardless of whether cymbalta was in the picture or not. i also truly believe i can get back to where i "was" or even be "better" than i was before ;-)

 

i think we all have it within us. and that can be with or without other meds to assist. 

 

Brzghoff

 

Thanks for your support.  I am in a low period right now and while I hope that some day I will pull out of all this, it's been going on for so long that I'm just sick and tired of being sick and tired.  

 

I can't work, which puts a lot of pressure on my husband which makes me feel so guilty.  I do the housewife thing and I am usually ok if I stick to the schedule that I have for myself regarding my chores and how my day will play out.  I volunteer at the SPCA to force myself out of the house at least a couple times a week, and I garden.  The nice thing about South Carolina is that with my small greenhouse from Big Lots I can probably keep some stuff going year round.  I also coupon, which takes a couple hours a week and when I save a lot of money that does give me the feeling of contributing to the finances, at least in a small way.

 

However, if my schedule gets messed up, I could end up really down for the whole rest of the day and maybe the next as well.  

 

But, I try.  Every day I try.  And I go to therapy and I do what she says.  I'm going to try to start some yoga and see how that goes.  And I'm not going to give up. :D


#18 shoshee10

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Posted 17 October 2014 - 06:40 AM

So I just had my second nervous breakdown in almost exactly 3 years.  Was in the hospital for a week again.  I'm now in intensive therapy with my therapist (3 times per week) and looks like I'll be seeing my psychiatrist every week to see how I'm doing on the meds.  


#19 TryinginFL

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Posted 17 October 2014 - 09:23 AM

Sho,

 

I'm so very sorry to hear of your recent problems. I wish you all the best and will keep you in my thoughts and prayers.  Be better soon and be kind to yourself!

 

Hugs,

Liz


#20 lady2882Nancy

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Posted 17 October 2014 - 03:57 PM

shoshee10

I can so relate to the problems you are having after having taken Cymbalta.

I was put on Cymbalta for chronic pain although my doctor had always felt I suffered from some depression.

I was on Cymbalta for a relatively short time when I began having problems with my mood. I lost all interest in anything I used to like to do and only sat in front of the TV. Next came the restlessness and yet I had no energy to do anything. Then life itself did not seem worth living and I actually started thinking of how to quietly end my life. It was time to get off this drug thus began my hellish journey.

 

I became so anxious that I could not leave my home without my husband with me. Driving was out of the question. I became suspicious of everyone around me and felt worthless and useless. I have experienced the depths of depression and mood swings so quick that you can't see them coming. I could be happy or sad one minute and raging in the next, then crying my eyes out while saying that life was wonderful.

Diagnosis - Mixed episode bipolar - Pardon me I was not bipolar before, how can this be?

 

A search of my family history revealed some family members with depression and other mild mood disorders which meant that I could have the genetic markers for bipolar that had not been activated until I took Cymbalta resulting in depression and mixed episodes and the discontinuation caused the anxiety which accelerates my mood swings - talk about ultra rapid cycling

 

I started this journey in January of 2013 and my psychiatrist and psychologist both say that it may be years before we can hit on the meds to get things under control. Not a thing I like to think about but this is my life now and I have to face that.

 

One thing I do know is that I would not give up a mood stabilizer for anything as it helps more than anything else I take and I have had to try a few to find one that works without causing me too many other side effects (Tegretol was the first - worked great but started to develop Steven-Johnson Syndrome and the latest is Epival which we are in the process of finding the right dose). I also take risperidone (a med for PTSD which helps immensely with the anxiety and helps slow down the mood swings.

 

I don't know if any of this is helpful to you but I did want you to know that you are not alone in a long journey to find a healthy life again after Cymbalta

 

Take care of you


#21 Blackbird

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Posted 20 October 2014 - 09:08 PM

Your stories are heartbreaking.  Must say,  been there.  I've been scouring the web for help.  Dysarthria always brings up Parkinsons.

Had an MRI last week, and will be another 3 weeks before I can see the Neurologist again.  Don't like that guy.  He said that Cymbalta could not cause my symptoms.  Been taking velvet bean as it is high in dopamine.  Not sure if it's the right thing to do, but my right hand seems to function better.

 

Found the following.  It has to do with psychotropic drug withdrawal and speech problems.

 

 

http://beyondmeds.co...oms-dysarthria/





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