Thursday, March 29, 2007

The Cymbalta Diaries

I deliberated long and hard before I decided to take this new drug Cymbalta that my GP prescribed to help with the pain from peripheral neuropathy. This pain, which is a result of nerve damage caused by one of my chemo drugs called Vincristine, has become progressively worse since chemo ended, and is beginning to put a big fat crimp in my QOL. On bad days the pain is all I can think of, and even on the best of days, it's preventing me from doing things I enjoy, like gardening and working out.

I had my last treatment in January. In early February I pruned my roses with no problems, but today my hands hurt so exquisitely and severely that I can barely hold my pruners, much less squeeze them. And I'm just waiting for the day when the pain and numbness cause me to drop an 800 pound barbell on somebody's head, most likely mine.

My life has become pretty darn miserable lately. I have numbness in my hands and arms and feet, accompanied by what's technically called "tingling" but that's way too mild and festive a word. It's really more like an intense constant soundless buzzing. Sort of like when your foot falls asleep, except here it's all four of my limbs, and they never wake up. And this grating neurological cacophony is accompanied by a throbbing, pervasive soreness, achy tenderness, and sharp shooting pains that radiate up my arms into my shoulders. I would like very much for it to go away.

But this drug, Cymbalta. In the few years since it's been approved to treat major depression, generalized anxiety disorder, and diabetic neuropathy (Vincristine induced neuropathy is actually off label but word on the street is it's effective anyway), it has managed to develop itself a pretty nasty anecdotal reputation among users. It's most popular nickname seems to be "the Drug From Hell."

Cymbalta's two most commonly reported side effects are: 1.) turning into a raging homicidal/suicidal maniac, and 2.) gaining 45 pounds. But when people try to stop taking the damn stuff, the withdrawal, even with tapering, is said to be more brutal than trying to quit heroine, cigarettes, coffee, and Grey's Anatomy all at once while somebody is pounding on your head with a sledge hammer and running electric shocks through your brain.

Here are some of the less dramatic symptoms that show up in a google search for Cymbalta side effects:

nausea
vomiting
diarrhea
profuse sweating
zero libido
severe insomnia
extreme irritability
agitation
constipation
suicidal ideation
debilitating lethargy
uncontrollable hunger
inability to eat
wild mood swings
kneejerk rages
vivid nightmares
blurry vision
tinnitus

Wait. That sounds awfully familiar, almost like...hmmm. Chemotherapy? Why the hell would anybody submit to this hell if their life didn't depend on it?

But. You have to figure there's a selection bias in action here: the people who take Cymbalta with very good results and minor or no side effects are not generally the people who stay up all night posting on internet message boards about how Cymbalta forced them to them hack their parents into tiny pieces and deep fry their spleens like a batch of Tater Tots for supper. So even if 99% of the people who take Cymbalta find it effective and benefit from great relief, any random internet search will tend to be skewered in favor of the 1% that became rabidly addicted homicidal ax murderers with a keyboard. That doesn't necessarily mean that I will.

But just in case I do, I've decided to start keeping The Cymbalta Diaries, so I can monitor my reactions to the drug. At least if I flip out and start deep frying people's organs, my beloved children may be able to sell the screen rights to these diaries and retire somewhere in the south of France where nobody knows who the hell their crazy mother was.

So, without further ado, I present to you: The Cymbalta Diaries, Day 1.

7:30: Woke up with severe pain and buzzing in both hands and arms. Feet felt like bursting into flames when they touched the floor. Nevertheless my mood was vaguely cheerful and spacy as usual. Pain subsided somewhat after a few minutes of puttering with the animals and boiling a pot of tea.

7:50: Made up a batch of super healthy high protein high fiber blueberry muffins with flax oil for breakfast.

8:15: Took first Cymbalta capsule, 30 mg., with green jasmine tea.

8:20: Decapitated three neighbors and gained 45 pounds.

8:21: Haha, not really. Actually I just took the muffins out of the oven. They turned out pretty good.

8:22: No change.

9:15: Nothing.

10:15: Nada. Have another muffin?

11:30: Ho hum.

1:00: Lalalala, I'm waaaaiting.

2:15: Ok, maybe the pain is a little less. Or maybe not. I can't really tell. Nothing dramatic. But also no sweating, no vomiting, no mayhem. No noticable mood changes, still vaguely cheerful and spacy. Maybe it takes time to build up or something. I'll report back later. But if you don't hear from me, be sure to watch the 6:00 news tonight. Just in case.


Day 1: Do I look any more deranged than usual?

29 Comments:

Blogger Margarita Mama said...

I was on Cymbalta for about 18 months. I was taking it for a combination of anxiety/depression and to see if it would help decrease the frequency of migraines. It wasn't the drug from hell for me. Kept me on an even keel as far as anxiety went, but only gave me minimal migraine relief. The only side effect I personally could not live with was the sweating. Summers were unbearable. It increased with time until I was barely turning on the heat in my house the 2nd winter(we live outside of Chicago) and people were asking me to turn up the heat when they came to visit.
Withdrawal was difficult, but I was forwarned by a friend who had gone off the drug more or less cold turkey. I weaned very slowly, even opening the capsules and making them smaller for a few weeks. I took a "liver cleansing" remedy from the local herbalist. I only experienced 1 electric brain shock and a couple of crappy flu like days after going completely off. I think you will be ok. If you read some of these message boards carefully, many of the people complaining about the Cymbalta are on several other drugs. So you can't be sure it was only the Cymbalta causing all the misery. I would approach this drug with caution but take what you read on the message boards with a grain of salt.

5:45 PM  
Blogger Dakiwiboid said...

Other than the loss of libido, I haven't had any of that on Cymbalta.

6:33 PM  
Blogger RC said...

Looking deranged and BEING deranged are two totally different things.
You look fine. You look OK.
I'd like to think of you as simply ranged. This way I sleep more soundly. (although the anagram for 'ranged' is 'angered')

It also occurred to me that the best way to quickly gain 45 pounds is to eat your axed victims . . .I'm not sure where this is leading to but as a random thought it has a certain charm.......
I still think that B12 and B-Complex vitamins with St John's Wort may be worth a try...

7:24 PM  
Blogger Lymphopo said...

RC, I'm taking so many B vitamins my pee glows like brilliant chartreuse neon. If I can figure out how to make it blink in the shape of a martini glass, I might open a bar.

Anyway, it's 5:32 and I haven't gained an ounce.

7:33 PM  
Blogger saraarts said...

Is this one of those drugs where you have to get it built up to a certain level in your system before you start to feel benefits? (Maybe you'll know the day you feel like decapitating someone and it doesn't actually hurt to lift the axe.)

9:58 PM  
Blogger simonsays said...

Your blog is so entertaining, and yet I learn alot. I think your spirit is amazing. I have neuropathy for other reasons (which are actually unknown at this time) and it is also getting in the way of my life. I am taking neurontin, and I find that it helps immensely with my strength level, but the pain is persistant. I have heard that this drug will also make me fat, and that's something I can't live with. So after I get over being pissed that I have to deal with this at all, I thought that it might be helpful to learn if there are other drugs out there that may be more helpful. I really thank you for keeping "the Cymbalta diaries", as I am sure that it will be entertaining as well as educational. You look quite with it to me....and if you decide to hack your parents to pieces, you can rest assured that you will not look the part of a killer. Or hacker. Or whatever. Thanks again for the great blog, I will be waiting for the next cymbalta litany. Jamie

10:51 PM  
Blogger johnieb said...

Don't forget a nice Chianti, or shall I bring some?

12:00 AM  
Blogger Lisa said...

Liz - I was on Cymbalta for about 4 months, also in an attempt to combat peripheral neuropathy. I felt nothing.
On the positive side, I also went off it cold turkey and still felt nothing.
I spent a lot of money on it, too.

I'm a firm believer in the Bora-Bora Treatment. Six weeks in French Polynesia; clear, warm Pacific waters, lots of fresh fruits and freshly-caught fish, a half-naked houseboy bringing you tropical drinks as you relax on the beach with a fabulous book - that will cure anything!

12:19 AM  
Blogger A.M.S. said...

Good luck with the new drug. Hope you find some relief with it. I can't imagine dealing with that level of pain (and to top it off, being unable to play in the garden...insult to injury!).

Um...can you share the muffin recipe? I'm always looking for good, high protein snacks for the eating machine my husband has turned into since he started lifting weights. I'm starting to run out of peanut butter and tofu.

11:23 AM  
Blogger Optimist said...

Liz - maybe you should add a bit of green stuff to those muffins!

http://www.newstarget.com/021643.html

There are two versions that can be had at the pharmacy - Marinol (I used to sell it) and one other...

Hope this helps -

11:24 AM  
Blogger Charlotte said...

Will you forgive me if instead of asking about Cymbalta I ask you for the blueberry muffin recipe? Good luck with the neuropathy--that SUCKS.

11:26 AM  
Blogger JoannaO said...

Hi, Liz, for what it's worth, those sound like the side effects I had with Celexa, and now that I'm taking Cymbalta, they've disappeared!So, you'll see for yourself. I hope it does the trick with the neuropathy.

10:22 PM  
Blogger Molly said...

I took Neurontin for neuropathic pain and it probably saved my life. The worst side effects were carbo-cravings (the drug doesn't cause you to gain weight, but it definitely makes you want to gobble the calories that can make you gain weight) and a slightly stoned feeling, which caused some word-retrieval problems. It took about a month before I realized it was working, part of which was a really gradual ramping up of the dose. So if the Cymbalta doesn't work for you, ask your doctors about Neurontin

8:02 PM  
Blogger Bob said...

I experienced an inability to ejaculate and increased problems with urination.

none of which I believe you will be troubled with.

good luck.

3:46 PM  
Blogger Bitchkateers Unite! said...

I took Cymbalta for neuropathy only (I don't need AD's). And I started having relief within 30 minutes of taking it. But after a few months, I did notice wacko side effects. Irritability (more than my normal bitchy), sleeplessness, mania. So like a dumbass, I stopped cold turkey. And nearly offed myself.

The next day my doc put me on Lexipro to taper off. I had been working out quite a bit by then and the neuropathy had gotten better. Got bronchitis and stopped workouts, so the doc put me on Lyrica which has helped quite a bit.

But I take like 40 pills a day so who the hell knows what is doing what anymore.

Get the port out, btw. Was the best day I had in years. Especially when I started swimming again. And showering without a patch.

Besos,
Debs aka www.debutaunt.com

2:50 AM  
Blogger Lymphopo said...

Hey look! It's the Queen of the Universe! How cool is that?

9:04 AM  
Blogger n1c0star said...

Didn't you see the commercial where all of the colorful, feel-good polka dots travel down the spine and disperse? I think that was actual footage of Cymbalta at work!
I've been taking this for roughly 6 months now for depression/anxiety purposes. I can't say it's the "drug from hell", but the one time I seriously forgot to take it for a week, complete accident, I went on a downward spiral and had my first suicide attempts ever in my life. I was a wreck.
I'm documenting my adventures in therapy, and I just realized that I need to take a serious look at my medications, something I've just left to the doctors. I'm pretty embarrassed actually.
You seem to be VERY in tune with your body, so I'll be interested in following your diaries.

3:46 PM  
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8:21 PM  
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12:07 AM  
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6:28 AM  
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6:31 AM  
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6:32 AM  
Blogger Belinda said...

I just came across your blog by accident and reading about your cymbalta experience (and that of others) really saddens me. There's a lot of negative stuff on the web about cymbalta, and believe me i've lived it! I was on cymbalta for 2 years. Being on it was great because it put my life back to normal. After the first year, I was more than anxious to be weaned. I can't tell you how painful and confusing the process was for me. But my doctor suggest that i remain on it for up to 3 years if thats what I felt I needed to do. It turned out that my body, my brain wasn't prepared yet to be off the drug. Even though I was eager to get back to a normal drugless life, my brain hadn't fully healed yet. And that's why people who weaned off are forced back on. I realize that the pharmaceuticals tell it we can be cured within only 6 months, but thats not really true. Most people are on this drug for psychological reasons. everyone's case is different. Their brains have gone through traumatizing incidents and that brain needs time to heal. When the time really does come, getting off cymbalta is really painless. i weaned off within 1 week. I took a couple omega-3's to help with some of the fussiness my brain felt, but that disappeared within 2 weeks after weaning off. And my brain felt strong. I could tell that I would be ok. There's alot of negative stuff online about cymbalta, but you need to realize that those who have been helped by it are not online blogging. They're out there enjoying their lives. I really hope no one would be scared by what they read about the drug. I suggest that they take it, let it do it's work, and be patient. When it has done what it's intended to do for you, to heal you, then your brain will have no problem re-balancing itself when off the drug.

7:58 AM  
Blogger Drew50 said...

I came across your blog about neuropathy and cymbalta today and have just realised that it was written in 2007 so a lot must have happened since then. Hopefully a lot of positive developments for you!
Anyway, I'll get to the point. I have reproduced your post on my own blog today and will willingly remove it if you have any objections at all - just let me know. I hope you don't mind because I run an information blog for neuropathy patients who also have HIV. (There are very few sites for our particular health group) The links are:
www.neuropathyandhiv.blogspot.com
and
http://www.neuropathyandhiv.nl/neuropathiehiv_002.htm
so you can see that it's a regular website and blog, with no commercial intent at all(I hate those sites that pretend to be helping people but just want their cash!)
Anyway my readers will certainly be interested in your story but if you have any objections at all, I'll remove it immediately.
Best wishes and hopefully you're in obscene good health!
Dave Richardson
Amsterdam

6:46 AM  
Blogger SuzanneP7 said...

THANK YOU for pointing out that there are many people out there who take Cymbalta who do just fine on it. Those who are happy with it and come off of it okay are not likely to post on an internet forum about how horrible the drug is! I freaked myself out when first taking it thinking everyone who was taking Cymbalta was posting on the internet. I was so scared. Then when I didn't turn into a raging maniac, I realized it was a small percentage of people who were posting (even though it seems like a lot). I am experiencing tinnitus for the past two days but it's not too bad. I see my doctor in two weeks so I'll tell her about it then. My mother lived with tinnitus for YEARS and had to sleep with the tv on. I can do this if she could.

11:47 AM  
Blogger Sue said...

I took 30 Mil cymbalta for almost one month. I was taking prozac and klonipon and levothyroxin for low thyroid. Thyroid levels looked good. Klonipon cleared my panic attacks, but I still got the blues bad, monthly , so she switched me to the Cymbalta. I had vivid dreams, insomia, sever dry mouth, ittibility, no appitite and tinitus. Have been off 1 week and back on prozac 20mil to start. I still have tinitus, irribility and insomia. Help!

2:53 AM  
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