7 replies to this topic

[nursedeborah]

Hello, all. First, thank you for this forum. I have been reading through recently, and am heartily sorry to read so many horror stories about this drug. My question/concern is a bit different than most of what I see here, but maybe I can get some feedback before I again talk to my LOVELY insurance company and doctor.

I was diagnosed with Guillain Barre in April 2007, after many tests and going to one neurologist who was an absolute nutcase who misdiagnosed me and ignored my medical history--namely the horrid virus I had in Marc of 2007 that, left untreated and festering, attacked my spine and caused the GB. I was put on Neurontin and one Lortab a day by another neurologist, who took the time to diagnose and do a full work up on me. I still see him, and he is an absolute angel.

After the GB, I regained most function, save for my left leg which remained numb. I still drag it round like some sort of lame pirate. My left arm, which is also numb from the wrist down, was diagnosed as ulnar neuropathy and damaged nerves, which are part of the after effects of the GB syndrome.

In 2008, I went off Neurontin and Lortab and was put on Lyrica for fibromyalgic symptoms I had developed. The neurologist felt it might help with the chronic pain and numbness. It did, but it started to poop out on me a bit. This past summer, I was put on Cymbalta and continue to take the Lyrica as well as Ambien for sleep.

For the first time in over a year, I was pain free. For me, the combination of drugs in my body has given me a new lease on life. I cannot believe how different I feel, and I am thankful every single day. Of course, getting used to Cymbalta was a little slice of hell--nausea, dizziness, vomiting. But after a couple of weeks, I was feeling fantastic.

Cut to this past week, when I was informed of new regulations and procedures from my insurance company. Usually, I get these meds at a 25 dollar co-pay. Now, each will go up to 50. Therefore, I am faced with either reducing my dosage or going off one of them.

I have lived in fear since Friday, not sure what will happen if I go off of Cymbalta, unsure how to "cut down" when I only take one per day, scared of that horrible pain. I put a call into the doctor and await his nurse's call for advice, but I am frightened to cut back, frightened of not being able to handle the withdrawals or the pain again. I need advice, here.

I've gone on quite a bit, and I apologize. Hopefully, some folks get through the "tale of woe" and have advice for me.

I wish all of you well--safe withdrawals, life without pain, and good medicines.

Angela

Angela,
Very sad story, I am so ver sorry fo all you have bee through.

What dose og Cymbalta are you on? If it work's for you, and you
not having side effect, then I would say on it, and do a wean
to get on the dose you can afford.

All you need to do is decrease by 10 beads every 2 weeks, or until
with drawls symptoms have gone, and keep doing so until you at the
dose you want to be on.

If you need the bead count, or any other help just let us know.

Debbie

[MaureenV]

Hello, all. First, thank you for this forum. I have been reading through recently, and am heartily sorry to read so many horror stories about this drug. My question/concern is a bit different than most of what I see here, but maybe I can get some feedback before I again talk to my LOVELY insurance company and doctor.

I was diagnosed with Guillain Barre in April 2007, after many tests and going to one neurologist who was an absolute nutcase who misdiagnosed me and ignored my medical history--namely the horrid virus I had in Marc of 2007 that, left untreated and festering, attacked my spine and caused the GB. I was put on Neurontin and one Lortab a day by another neurologist, who took the time to diagnose and do a full work up on me. I still see him, and he is an absolute angel.

After the GB, I regained most function, save for my left leg which remained numb. I still drag it round like some sort of lame pirate. My left arm, which is also numb from the wrist down, was diagnosed as ulnar neuropathy and damaged nerves, which are part of the after effects of the GB syndrome.

In 2008, I went off Neurontin and Lortab and was put on Lyrica for fibromyalgic symptoms I had developed. The neurologist felt it might help with the chronic pain and numbness. It did, but it started to poop out on me a bit. This past summer, I was put on Cymbalta and continue to take the Lyrica as well as Ambien for sleep.

For the first time in over a year, I was pain free. For me, the combination of drugs in my body has given me a new lease on life. I cannot believe how different I feel, and I am thankful every single day. Of course, getting used to Cymbalta was a little slice of hell--nausea, dizziness, vomiting. But after a couple of weeks, I was feeling fantastic.

Cut to this past week, when I was informed of new regulations and procedures from my insurance company. Usually, I get these meds at a 25 dollar co-pay. Now, each will go up to 50. Therefore, I am faced with either reducing my dosage or going off one of them.

I have lived in fear since Friday, not sure what will happen if I go off of Cymbalta, unsure how to "cut down" when I only take one per day, scared of that horrible pain. I put a call into the doctor and await his nurse's call for advice, but I am frightened to cut back, frightened of not being able to handle the withdrawals or the pain again. I need advice, here.

I've gone on quite a bit, and I apologize. Hopefully, some folks get through the "tale of woe" and have advice for me.

I wish all of you well--safe withdrawals, life without pain, and good medicines.

Angela

Sorry to hear your story. I hope for the sake of people like yourself those of you in the US get the health system you all deserve in the future, where treatment is a right, not a privilege of those with money and/or a job.


Unfortunately one of the withdrawal effects of Cymbalta is aggravating the pain it was designed to help in the first place. I wasn't on it for pain, but when I came off it, had pain in every single 'weak' spot in my body - places I'd hurt in accidents decades ago were complaining; the pubic pain I got when I was pregnant 20 years ago started again.

I know this is probably making you feel even more concerned, but you need to be aware that some of the pain is just(!) a withdrawal affect, and not what you're going to be stuck with forever.

regards, Maureen.

[Southernreign]

Sorry to hear your story. I hope for the sake of people like yourself those of you in the US get the health system you all deserve in the future, where treatment is a right, not a privilege of those with money and/or a job.


Unfortunately one of the withdrawal effects of Cymbalta is aggravating the pain it was designed to help in the first place. I wasn't on it for pain, but when I came off it, had pain in every single 'weak' spot in my body - places I'd hurt in accidents decades ago were complaining; the pubic pain I got when I was pregnant 20 years ago started again.

I know this is probably making you feel even more concerned, but you need to be aware that some of the pain is just(!) a withdrawal affect, and not what you're going to be stuck with forever.

regards, Maureen.

Getting drugs is a right? Come on... that is the thinking that has gotten this country where it is at.
Drug companies like that which makes Cymbalta just line the pockets of the pharmaceutical companies, they do not want you cured, but hooked.

The evidence here is clear.

[Southernreign]

Angela,
Very sad story, I am so ver sorry fo all you have bee through.

What dose og Cymbalta are you on? If it work's for you, and you
not having side effect, then I would say on it, and do a wean
to get on the dose you can afford.

All you need to do is decrease by 10 beads every 2 weeks, or until
with drawls symptoms have gone, and keep doing so until you at the
dose you want to be on.

If you need the bead count, or any other help just let us know.

Debbie

Okay, let me get this clear, you want to scale back 10 beads from the 560 beads- (560beads/60mg tablet) every 14 days until off? Hmm... that would take...80 weeks!!! Am I reading that right? That's a year and a half!

[MaureenV]

Okay, let me get this clear, you want to scale back 10 beads from the 560 beads- (560beads/60mg tablet) every 14 days until off? Hmm... that would take...80 weeks!!! Am I reading that right? That's a year and a half!

Once you find out how long the withdrawal symptoms take to subside, you can work out how fast you can go. For me the symptoms started within a few hours of the dose drop, then were gone within four days, when I could drop again. I spent 10 weeks dropping 20mg this way. I WAS impatient and tried to drop faster a few times but due to my work had no choice but to go back to the original plan. I even tried to stop completely at 10mg.

Others find the worst of the symptoms don't hit for nearly a week.

Once you find out the personal situation, you can adjust accordingly.

regards, Maureen.

[Southernreign]

Once you find out how long the withdrawal symptoms take to subside, you can work out how fast you can go. For me the symptoms started within a few hours of the dose drop, then were gone within four days, when I could drop again. I spent 10 weeks dropping 20mg this way. I WAS impatient and tried to drop faster a few times but due to my work had no choice but to go back to the original plan. I even tried to stop completely at 10mg.

Others find the worst of the symptoms don't hit for nearly a week.

Once you find out the personal situation, you can adjust accordingly.

regards, Maureen.

Were you able to get COMPLETELY OFF?

[MaureenV]

Were you able to get COMPLETELY OFF?

yes, after 10 weeks, started weaning at 20mg (after being on 30 then 60 (a few weeks) then 30 again, then 30 alternate days). Needed 20mg to alleviate symptoms. Made my own up with 60mg capsules. I found it much, much faster to do the divvying up compared with counting beads. The other advantage I found from dividing up the doses was that I would be preparing several days worth at a time. Others find the bead method preferable.


Horses for courses, as they say.


Maureen.

[marybon]

I have taken serzone for years and have done pretty well. My only problem has been a little lack of energy. My doctor decided to add cymbalta and reduce the serzone until I stopped taking it. I improved as long a I was taking the combination. After I stopped the serzone I started to have a few problems. These problems increased at a rapid rate. My blood pressure and heart rate became very high. I always have blood pressure rates in the range of 110 over 70. I reached a point of having trouble breathing, tightness in my chest and extreme anxiety. I went to the ER on the advice of my doctor, When I checked in my blood pressure was 177 over something. I had a weight gain of over 10 pounds. I was there over 4 hours with oxygen helping me breathe. I saw my psychiatrist and she took me off the cymbalta competely. She has suggested that since I am back on the serzone, when I return to normal, we add the cymbalta. I know that I won't risk it again. Please understand that I have always had a problem with medications. Some have worked some have had a negative reaction. I have found a good combination of dosage for the serzone and I don't think I will try anything else. After over 15 years of dealing with anxiety and depression, I have found that medications for anxiety and depression can often cause anxiety and depression. I have brought my blood pressure down, not as low as it should be, I have starting losing the weight I had gained and I feel good. After the years of serzone I don't have periods of depression, but I do deal with anxiety. If your doctor recommends cymbalta then you might want to try it. My experience isn't necessarily the usual one, but I would like to alert you to the symptoms. Good luck to all.