AnonymousDecember 5, 2010 at 9:32 am
[FONT=”Microsoft Sans Serif”]i have never shared this story on the forum before but thought i probably should–
in short, i was put on cymbalta for pain early 2008, shortly after being diagnosed with cidp. although tough to manage the initial side effects, i pushed through them and, as they settled down, i noticed a significant decrease in pain. great, i thought, and i stayed on it for the long haul.
about 8 months ago, i decided i didn’t need any further medicine support as my pain and condition had subsided post transplant. although i had steadily taken hydrocodone over the years, cymbalta was the only medicine i had difficulty getting off–
it took me about 8 months and it required sophie opening up the capsules and counting the beads within! since eli lilly denies that there is any such withdrawal, the lowest dose they produce is 20mg! hence sophie’s painstaking work of removing 2 beads per day over the months.
i’ve been off cymbalta about a month now, finally… without going into specifics, suffice it to say that trying to stop cymbalta from the 20mg step took me apart at the seams. it was a very dark and frightening experience. my reason for posting this as well as the link below is to warn others to either not take it to begin with or if you already are taking it– be very careful coming off of it. intense anger, depression and suicidal ideation are commonplace– and there are currently numerous lawsuits due to cymbalta withdrawal related suicides…
December 5, 2010 at 12:17 pm
thanks alice!…..those withdrawal symptoms you mentioned sound awful, horrible to imagine when combined with the depression side of cidp or gbs
AnonymousDecember 5, 2010 at 8:57 pm
I instinctively realized that staying on the anti-seizure meds were causing more problems than solving them, so w/my current neuro’s guidance, I slowly withdrew from them. These meds weren’t working well overall with meds I HAD to take for other conditions, so, going off, and seeing how much pain [or not] I had wasn’t ‘different’. Actually, once off? Not much difference at all. I figure I’d gotten ‘conditioned’ to them, and larger doses would have been required. I’m lucky that while I’ve pain? I can mostly live with it as it is and take Tyelenol or Tramadol for the ‘bad times’. [Tho, at times I feel I can chew and bend/mash nails at times-it passes]
Lilly may deny any claims to ‘withdrawal’ symptoms? But their prescribing info? Well, take a look at #5.6 and there abouts…. THEY don’t ‘seem’ to have tested in this particular quarter? HUMMMMM. I guess in not doing so, there is ‘deniability’ or the like? Some lawyers would have ‘fun’ with this, but charge you a fortune while fighting a mega co.
AT LEAST YOU’RE OFF! Most of all? I’m happy for all the reasons that you are off!
I can attest that getting off some meds isn’t fun! Going off neurontin was one prime goal for me as the first neuro I’d had [and fired later] kept upping this stuff to the point where I was hallucinating. While awake! It was easy, going slow.
None of us need to go ignorantly into this morass, We shouldn’t need to!
Congratulations on getting off stuff!!!!!!!!!!!!!!! Hugs and hope!
AnonymousDecember 5, 2010 at 10:32 pm
I can testify to what Alice said. I am on cymbalta. I once tried to go off of it about two years ago cold turkey. Was that a trip! Anger, rage and a side order of depression were the order of the day. I decided that I better go back on the drug before I harmed someone around me. That how bad it got.
Next time I will do a controlled phase down. I think there was a thread before about that. If you do it correctly it’s only was stroll through hell rather than a long expedition. Long story short, like a lot of the drugs we take, the benefits have to outweigh the downside. For some they do, for some they don’t. We each are different.
Thanks Alice for reminding everyone again about the possible problems with this drug.
AnonymousDecember 6, 2010 at 10:02 am
I was on it in the nursing home ,my neuro rxed for pain, I kept taking my paxil for a week till the cymbalta got in my system. That stuff made me so angry, & I can remenber 1 time I was ready to run the back of my head into the glass wall mount that holds the fire extingisher. I did not however really wanted to hurt self or someone who just made me angry. That Cymbalta REALLY messes with your head!!! I think I was on it for a month & I told them to take me off this crap. & they put me back on my Paxil. Had to do both pills for a week.
I will never take that again, the only thing I noticed with it was the messing up your mind. I DID NOT get any pain relief from it !!!!
AnonymousDecember 6, 2010 at 11:44 am
[FONT=”Microsoft Sans Serif”]jimc– yes… it’s hell on earth. be very careful when you next try to get off of it. my method, which i borrowed from the internet blogs, was to count beads and reduce them slowly over as much time that was necessary, even if that meant a year… in my case, i was able to safely jump off at 20mg minus 75% of the beads. i was still spitting nails for a while when something didn’t go my way– but it was manageable. good luck jim.
isaroaz–very glad you recognized so early how dangerous cymbalta is and am impressed with your insistence on stopping it early on. i think you saved yourself a lot of grief.
homeagain– i agree with all you wrote. thanks, i too am thrilled to be off it! lawsuits aren’t too much my style– i think i would need something much more tangible to pursue that route… like if they removed the wrong arm or something 🙂 what i did find interesting is this website where you can see what moneys your doctor receives from certain pharmaceutical companies!
it has its limitations as it is only the pharmaceutical companies that chose to disclose which are represented… interestingly, i found out that my 1st, and horrible, neurologist gets paid by ili lilly… here is the link: [url]http://projects.propublica.org/docdollars/search?term=katz&state%5Bid%5D=5[/url]
i left my doctors name in there so that you can see how it looks when someone comes up as paid. you can just replace his name and adjust your state to do your own discovery.
incidentally, dr. jonathon katz, md, is one of two neurologists that this foundation recommends for folks in my area, lol, go figure— (the 2nd one recommended is his boss, same office–lol)[/FONT]
AnonymousDecember 6, 2010 at 8:07 pm
BUT I also know that he is an independent contractor/consultant who has worked for various Disability companies. I personally, can waffle on his medical opinions, as he’s on the other side of the ‘continent’ ?
I worry tho, as he has been a proponent for IVIG and other therapies for CIDP and other neuropathies…that he’s straddling the SanAndreas fault in some ways. To me? that’s walking a fine line between legitimate and ‘consignment’?
Besides, we’ve got enuf docs on the East Coast who waffle of our own!
Thing that now concerns me? IS that he lists himself as a ‘researcher’ with a hospital teaching facility, yet has gone on his own as a consultant…AND is not listed on that hospital’s staff or consulting staff. Personally? These days, I don’t consider any doc a ‘saint’ or otherwise! I’d just like them to be a ‘bit’ curious about ME? And, my neuropathies!
What I won’t tolerate tho? IS docs who say: ‘It’s just nerves’ or ‘You can’t be that BAD, you have to be in a wheelchair to get that treatment’! Yes! It’s nerves? Sick nerves, not a ‘nervous mental condition’, nor the fact that I’d BE in a wheelchair had I not gotten treatment!’
Such statements to a patient, so bluntly put? Are unconscionable. And, should not be tolerated. More discussion between doctor and patient can and usually does clear things up? Or, you just hate the doc and shop for another one! I say…no blame? No connect.
Yes, some docs get big bucks for some meds! It’s down right spooky to actually hear a pharm rep talk to a neuro about Med A and not know a patient is ‘listening’? Happened to me, by accident at one office, and I sure wanted to put MY THE PATIENT’s 2cents worth in? But restrained myself.. These folks don’t care about US in this sort of transaction! We are just $$$ at the bottom of the food chain.
Alice? That you are OFF and good with the ‘being’ off? IS the best part for all you’ve been thru! Only a teeny bit of me is jealous, the rest of me is FULL of HOPE! Thank you for that! And, HUGS in HEAPS!
AnonymousDecember 6, 2010 at 11:59 pm
Google “Water Titration Method” for tapering off drugs that can cause withdrawal. Carefully measuring each taper dose using this protocol.
Too many drugs have been casually prescribed that are very addictive. Physicians seem to be in the dark about this.So many rely on pharmaceutical reps for info toward how great the drug is without any negative problems it might cause.
AnonymousDecember 7, 2010 at 1:21 am
I have opened the capsules up before and just dumped about half of the contents out and then put the capsule back together and take it. I did wonder when I would do this…is all the little beads in there the same thing or what ? I did not make the drug, so how would I know if there might be different drugs that work together in them little beads. I would wonder if …could something be harmful by MAYBE dumping something out that must be in the capsule to make it safe. I have usually done this when I have taken the limit of the prescribed capsule and need more, so I just used the old pull the capsule apart trick and took whatever capsule I may need that method apart for and take it. Just some of my thoughts when I did this and wanted to share .
I must also say that I don’t trust Drs. as far as I can throw them.
AnonymousDecember 7, 2010 at 12:32 pm
[FONT=”Microsoft Sans Serif”]well, to give you an idea– dr. jonathon katz said many things to me in the jerkoff category. for example, as i was becoming sicker and sicker– unable to walk and little inconveniences like that, i said to him, “i’m scared.” his reply, “why are you scared? you have a little rash on your nerves and it should be gone by your next appointment.” he always said that i would be better by our next appointment, that it would spontaneously just go away. silly me, i bought into it– believing what sounded most appealing, i suppose. he also said to stay away from the internet because it was like a “sucking vacuum” with the few sick folks that didn’t remit on their own. further, he added that there is no proof that getting treated, with anything, makes any difference in terms of the disease “running its course.” when i asked him about all the folks on the forum whose disease is still running its course after several years, he reminded me to stay off the internet; and that many of those folks (you) are probably misdiagnosed anyway…
these were the ongoing messages that i got from katz for my 1st and crucial 6-7 months. when i walked in to see him at around the 6 month point, a crutch under one arm and sophie holding me up by the other, he shook his head and said, “okay, it would seem we were to casual about treating this thing.” finally, i thought. we ordered up ivig (5 days) — it did nothing at all. then, much to my dismay, we began the dreaded prednisone… if there is anything i feel i am still recovering from its that crap. michelin bodies don’t fit into uniforms…:cool:
i wouldn’t even know where to begin to criticize him– not treating me sooner? playing the disease down? not making himself aware of the truth about the SCT and hence being against it? his general callousness? and throughout my time with him, i seriously felt that his belief was strongly placebo based. for example, when i began prednisone and within 12 hours noticed a difference in my strength, he thought i “liked it too much.” also, he reminded me over and over how some folks get addicted to prednisone– it didn’t matter that i told him how much i hated, in fact despised the drug. my general impression, he should have placed his intelligence into research, rather than being a clinician…
pardon my having digressed here– homeagain, you got me going 😉
AnonymousDecember 7, 2010 at 3:00 pm
Alice, I was on Cymbalta for ONE DAY and I ended up in the ER the next day with low blood pressure (80 over 60), blurry vision, vomiting, etc. I have only been in the ER twice in my life, once after the initial vaccine reaction and then after Cymbalta. I immediately stopped it and have been reluctant to take any antidepressants since.
I agree with you that people should be careful, and I have read that a lot of people have issues with withdrawal from any antidepressant for that matter. It should be done under the supervision of a physician. Sorry to hear about your experience and I am glad to you are educating others. That being said, there are many people who benefit from this and have little issues. It all depends on the person to make his/her own educated choice.
AnonymousDecember 7, 2010 at 3:18 pm
Alice, I also wanted to comment on your experience with the one neuro. That is really frightening and disgusting. My first neuro was very callous and blase with me, patting me on the shoulder and saying that I should be ok. A year later, I am not. I was scared to get a spinal tap because of the headaches, (I was trying to work with 2 small kids), and I asked him what happens when you get the headaches. He said, you have to lie down for weeks. I said no, thank you, I have 2 kids to take care of. I later found out that there is a procedure called a blood patch, that they can try if you have a spinal leak to patch the hole. But did he tell me about this, NOOOO…that is when I went to U of C and Northwestern. I am still convinced that I missed a window for possible treatment due to this first neuro (suburban neuro) and going along with him for about a month before I got a second opinion, and believe that I would not have the problems I have today. I asked him for treatment and he said, “Not unless you are not walking.”
What I have learned from this experience is to always go to a teaching hospital’s ER and physicians if you can…..they know so much more. You can never get that time in the beginning back, and it can be life-changing. I am very happy for others, who have had such good neuros and positive experiences in the beginning and it makes me hopeful, even though my experience was not along these lines.
AnonymousDecember 7, 2010 at 7:03 pm
[FONT=”Microsoft Sans Serif”]you’re right, you’re right about everything– its very scary stuff we take sometimes. thing is, we all, this cohort, tends to take it for neuropathic pain. since the fda approves it for the use in diabetic neuropathic pain, it gets prescribed a lot. as you and i did, for example. it seems common and i concur, that the pain relief we first enjoy when starting cymbalta, for some anyway– does not, it would seem, have sustainability. it doesn’t last. it goes poop. so then many of us and other folks, non-cidp’ers, taking it for pain relief, end up hooked on the damn stuff. and it is not properly documented both: a) that it is addictive and b) that the come down is excruciating (and could use some medical acknowledgement and support). anyway, i rant on… and i know you get it. i too feel that having lost 6 months in the beginning hurt me and my recovery now. i never needed to get that bad– turns out, prednisone, as hellacious as it was, worked for me. but i went untreated for that time believing that “i can guarantee you alice, this will all be better next time we see each other…” bummer, but nothing i care to linger in emotionally. truthfully, i don’t feel much about it anymore. my mom wants me to parade around his practice to show him how much improved i am– you see, he said that my damage was irreversible, as in the example of my foot drop– my foot drop is so long gone… i digress like there’s no tomorrow.
cymbalta is bad, be very careful coming off it, it can and most likely will unhinge you. the only way i have found to do this is to come off their lowest dose of 20mg and begin subtracting beads contained within them. (i think drummer wrote earlier this thread that she worried that all the beads were not of the same medicine– actually, they are all the same, i checked it out with a pharmacist) for me, i took away 2 beads per day. i also sometimes skipped a day but carefully monitored my mood and feelings. but pretty much i stuck to the minus 2 beads per day until i was in the last 25% — sweet sophie did the tedious labor with the beads, she even knows how many are in each 20mg capsul…lol) then i jumped off and it wasn’t easy… but it was manageable. it seems that folks are not much affected from the higher doses to the lower doses, like from 90mg to 30mg– it seems to be when it gets very low in your bloodstream. search this stuff, its all over the internet– i even attached a link in my opening of this thread, of a website that was made just for, let’s call them [I][B]cymbalta victims[/B][/I].
i’m not on any mission here. i only thought it socially responsible to spread the word and let folks know its pretty common, so that they can make educated decisions about whatever they want to do.
i am floored by your experience with only one day of cymbalta and ending up in the ER. wow! i can only imagine– chest pains? racing heart? you see now how desperately i wanted off that dog-forsakin drug…?
AnonymousDecember 8, 2010 at 12:12 pm
I am one of the unfortunate few that gets side effects from meds. I did not expect to have to go the ER, but I knew something was really wrong and I could hardly stand up due to the very low blood pressure. I have had autonomic issues as a result of this vaccine, so I suspect that makes me more susceptible, I dunno.
Thank you Alice for educating everyone on here. You have been so helpful to so many people on here and you are so sweet to do this. You are very lucky to have such a wonderful partner as well. I am so thrilled that you continue to recover as well as you have!!
I have looked up other sites for other possible conditions that I may have, and I have not found a forum as good as this one, due to the kind and knowledgeable people on here. GBS/CIDP is scary and the support on here is just tremendous. The reason that we all have this bond is unfortunate, but I am grateful that you are all here. I saw some quote from Elizabeth Edwards (R.I.P) about resilience, about being dealt adversity and not being happy about it, but accepting it as a new reality and having positive come out it. That is the challenge that we are faced with every day…..
AnonymousDecember 8, 2010 at 1:32 pm
[FONT=”Microsoft Sans Serif”]~ yes, elizabeth edwards i have always liked. such grace she had, even with her miserable husband and bad health. i hope she passed peacefully…
thanks so much for your compliments jessica, albeit ill deserved.
as long as we refrain from becoming didactic, i agree, it is a worthwhile forum.
it’s been nice to see newer folks breathe fresh air into it–[/FONT]
AnonymousDecember 10, 2010 at 7:58 pm
I saw too many patronizing neuros before I decided who was to be my #1, mainly not my first choice, but, given emergencies access…and with CIDP [and a few other things?]READY access was key.
Funny, tho? [Not really, but a common thread for all] is how our brains went into ‘alert!’ or ‘REDALERT!’ status sooner or later…usually? Later? Because we simply DID NOT KNOW [B]NUTHIN![B][/B][/B]
Any doc who says ‘stay off the internet’? I’d stay away from! Why? Because sites such as this and other good and valid sites offer key info to US as patients/sufferers INFORMATION that these docs do not and likely cannot take the time to tell us about.
I challenge all here, maybe we should do a poll? How many of you have had more than 30-45 seconds of explanations about a new med? Side effects? Drug interactions? [Don’t know about you folks, but each doc I see gets an updated ‘medical history’ every time I am seen, including new med issues, meds and a list of all the docs I see w/their phone #’s- ON ONE PAGE!] IF they don’t read it? They will have a problem in the long run! Can’t say ‘didn’t know’!
At times I think some docs are truly afraid of ‘smart/savvy’ patients? I ask questions, I seek answers and I often refer valuable resources to my neuro.
As well as research, of which you were a part, Alice.. I’m waiting for him ‘to get back to me’- I’m not holding my breath, but am glad that it’d even cross that mind! And, I keep reminding him! Pesky me?
For me? Heck was Neurontin…in huge doses! The ‘hallucinations’ part really got to me-and [I]that[I][/I][/I] [ex]doc wanted to increase it even more? It was pretty hi already… I could NOT WAIT to get off it. And, luckily titrated off it easily. Hey, we live, learn, get smarter and get TREATED as best as we can find! I truly wish it were simpler? Someday maybe. Hugs to all!
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