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"Cymbalta Discontinuation Syndrome"---ever hear of it? (others Rxs cited also)

Started by olmphoto2, November 16, 2011, 05:02:02 AM

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olmphoto2

I received these links within an email newsletter today from Interstitial Cystitis Network (ICN):

article by Dr. Christina Lasich MD -    http://www.healthcentral.com/chronic-pain/c/27148/146506/cymbalta
FDA Report - Cymbalta Discontinuation Syndrome - http://tinyurl.com/yk5uvdf

"...Have you ever struggled to reduce the dosage or just get off of an antidepressant? Did you struggle with profound side effects? Patients trying to wean themselves off of Cymbalta have reported severe, devastating side effects. The FDA recently released an advisory about this syndrome. If you've taken it longer than four weeks and then stop or reduce the dosage, you could experience extreme mood swings, debilitating "brain zaps" and many physical and neurological symptoms.
Tragically, many patients have been told that these symptoms were impossible and/or all in their heads. Now we know that it's a real syndrome that the manufacturer, Lilly, does not appear to be taking seriously. One key problem is that the medication is only available in 30 or 60mg... thus making it very difficult to slowly wean yourself off of the medication.
If you are taking cymbalta or any of the similar antidepressants (i.e. effexor), you should read the following materials. Getting off these medications safely and without these side effects will take a lot of planning and work! "
Mary Ann in Wisconsin

"A man will be imprisoned in a room with a door that is unlocked and opens inwards as long as it does not occur to him to pull rather than push." 
          Ludwig Wittgenstein

Meld256

Hi Mary Ann,

This is interesting...being aware of any adverse effects can be important to know and yet, again, we all need to weigh the pros and cons of any medication.

I took Cymbalta for almost a year and it helped me immensely for months. When I weaned off to go on Savella, I did it very carefully under my Rheumy's supervision.  Since I was on 60 mgs. he gave me a starter pack just like you would take to slowly start taking it.  So I took less and less very slowly over about 3-4 weeks.  Then I started the Savella slowly, too.

I admit I didn't feel well over this time, but I didn't have anything severe happen. I believe this to be because I was aware it wasn't a drug to stop abruptly.  Again, always good to know more about the meds we choose so we can make the best decisions for our own treatment.  ;)

cat

Meld256

I have to wean off cymbalta because I can no longer afford it and have been very concerned since receiving the same info as Mary from the ICAwarness.

You mention a starter pack helped you to wean off. What does the starter pack consist of if you can remember? Cymbalta only comes in 30mg and 60mg doses in Ontario. Does the starter pack have smaller doses?

I am seeing my Dr on Fri to get myself started weaning. I wasn't concerned before because I have gone through the weaning process before and was expecting to feel ill for awhile but with this new info I don't know what to expect.

Cat

jazzlover

In other words, WITHDRAWAL. How terrible that the drug companies do not test these drugs more carefully! And then if someone has trouble... it's DENIAL.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

SueAnn

I started Cymbalta last Friday and by Saturday night I felt like a zombie.  I stopped the drug immediately and I am going to stick with Tramadol.

SueAnn
Sjs
LDN, Plaquenil, Evoxac, Prednisone, Restasis..
Vit B complex, calcium, Vit D
Female - 50ish

irish

Pretty much all the antidepressants need to be tapered down to get off. When I was working as a nurse we had a psychiatrist who dealt with the geriatric patients at our nursing home and these meds were given for problems that needed treating.

However, these drugs are not to be taken without investigating them first. There is so much that the patients and the drug companies learn over the years about these drugs. I always expect a new drug to cause some unexpected problem and usually opt not to take them for a few years. I don't want to be first in line for any surprises.

Some of the antidepressants are harder to get off than others. The other variable is that we are all different and the way we metabolize these drugs is an individual matter. Sooo, when we go to wean off of them it pays to do it very slowly and like was mentioned, it helps to start taking a low dose of another antidepressant at the same time.

This may sound counterproductive but what is happening is that the other antidepressant is helping to replace the brain chemicals in a different way so that the side effects or withdrawal is less. I have done this when tapering off of xanax and used another benzodiazapine at a lower dose and this worked well. You then wait awhile and taper off the drug that you were using as an aid in the taper. There is always more than one way to skin a cat. The most important thing is to go slowly.

It is advised to cut a dose by 25% at a time and to then wait weeks or several months before tapering again. Sometimes after a taper a person will think that all is well and then you get a delayed reaction. I think that this is because the half life of a drug, the amount of time it takes to get all of the drug out of our system, is different for every drug. Some drugs have very long half lives.

If you aren't familiar with this term you can do a search. I doubt that I would be able to explain it well enough for you to understand. Just know that every time you take a pill it will last so many hours. Say that in 24 hours you will have 50% of the drug left in your blood stream. Then the next day you take the pill again and another 50% is left in the blood stream, etc. In other words it piles up!!!!!What piles up must pile down. Sort of dumb statement but it decreases and you can quit the drug and it can take another 2 months to get it out of the blood stream. Sort of a lame description but the best I can do with my brain fog. Irish ;D

Carebear

I had "brain zaps" while taking a similar antidepressant, several years ago.   My doctor looked at me like I was making it up when I told her.   It was just awful.  :(

So after one year of "zapping" every time I moved my head, I began slowly tapering off the meds (it took about six months).  For at least two months after I was off the drug altogether, I still had these terrible "zaps".

As you can imagine, I'm no fan of antidepressants for myself thanks to that experience.  But I do support others in making this choice. 

Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

arina83

Have heard of this happening with other antidepressants too. I experienced this coming off lexapro, and it's why I refuse to take another antidepressant.

Meld256

Irish,
You give a very good description, brain fog or not.  ;) 

Cat,
I'm sorry you need to stop because of cost.  There are some patient assistance programs here in the US, but not sure what's available in Canada. 

The pack I was referring to as a starter pack had very small doses. If I remember correctly (?) it was something like 2.5 mg. 5 mg. 10 mg. and so on til you got to 30 mgs. over a few weeks' time.  I stretched it out to about a month, I think when I began.  I didn't take 60 mgs. til I was on it for about 6 months.

So I did the same when weaning off.  From 60 mgs. every day to 60 every other day, then smaller til I got to 30 mgs. and over about a month down to the 2.5 mgs.  It took about a month-6 weeks.

I was also on trazadone at the same time, so my experience or anyone else's might be different, just as Irish states.  I can say that I felt rather crappy this whole time.  Not awful, but just "not right."  I didn't sleep well, I had a little more anxiety, just a "yucky" feeling.  Sorry, but hard to explain. 

I admit I didn't know much about Cymbalta when I started it. I just wanted some relief!  Looking back, for me personally, it helped me a lot while I was taking it for about a year.  My symptoms were getting worse, so my rheumy put me on Savella instead.  It has helped me and continues to.

Guess in summary I am saying that the benefits I received from the Cymbalta were worth the nasty feeling I had when I weaned off it.  But, of course, that won't be everyone's opinion or experience.

I hope this helps a bit!  It can be so hard to decide what might be best for each of us.  We just have to take all the information we have and try to do the best we can.

irish

I guess that I look at the antidepressant issues differently than some people. I know that for myself I suffered just terribly most of my adult life from terrible anxiety and depression. I was not a crier, etc but I just felt like things weren't "right" or in sync and my anxiety was paralyzing and I did everything I could think of to make it less. NOthing worked. Also, as it turns out I have had autoimmune issues all my adult life and my immunologist said "no wonder you have been depressed, you have been sick all your life".

I refused to take a lot of the meds they wanted to give me because of their poor track records and when the SSRI's came out and I was put on Zoloft it really changed my life. Didn't cure all the anxiety, but I was able to sleep some better and the anxiety was much less. I know that I could not have continued to work or exist in a useful manner without the help of antidepressants.

I know that people don't want to be on antidepressants, and I would prefer not to be, but it has made my life much better. I have tried many, many different SSRI's and the zoloft is the one that calms me down and keeps me level. It is a heck of a lot better than being a nasty, mean mouthed person, short of temper(irritability is a huge symptom of depression) difficulty organizing, coping, etc and it is a heck of a lot better than self medicating with alcohol.

I have always told people that I don't drink because I know that it would take ALL the anxiety away and I would end up being a slovenly drunk. So, for me antidepressants make life better--probably make my mouth a little more dry, but so does the thyroid medication. Everything we seem to take affects our mouth in one way or another but we can't sit on our hands and suffer all the time.

I can appreciate many of you choosing not to take antidepressants, but I would hope that if you ever get in big time trouble with depression that you would run, not walk, to the nearest doctor for help and medication because people commit suicide unintentionally when in a depression. The problem is that sometimes people are unable to identify and accept that they are suffering from depression. It is not a weakness, it is a serious disease.

Just my humble opinion on this subject. Irish

soycoffee

Quote from: irish on November 17, 2011, 09:12:28 PM
I guess that I look at the antidepressant issues differently than some people. I know that for myself I suffered just terribly most of my adult life from terrible anxiety and depression. I was not a crier, etc but I just felt like things weren't "right" or in sync and my anxiety was paralyzing and I did everything I could think of to make it less. NOthing worked. Also, as it turns out I have had autoimmune issues all my adult life and my immunologist said "no wonder you have been depressed, you have been sick all your life".

I refused to take a lot of the meds they wanted to give me because of their poor track records and when the SSRI's came out and I was put on Zoloft it really changed my life. Didn't cure all the anxiety, but I was able to sleep some better and the anxiety was much less. I know that I could not have continued to work or exist in a useful manner without the help of antidepressants.

I know that people don't want to be on antidepressants, and I would prefer not to be, but it has made my life much better. I have tried many, many different SSRI's and the zoloft is the one that calms me down and keeps me level. It is a heck of a lot better than being a nasty, mean mouthed person, short of temper(irritability is a huge symptom of depression) difficulty organizing, coping, etc and it is a heck of a lot better than self medicating with alcohol.

I have always told people that I don't drink because I know that it would take ALL the anxiety away and I would end up being a slovenly drunk. So, for me antidepressants make life better--probably make my mouth a little more dry, but so does the thyroid medication. Everything we seem to take affects our mouth in one way or another but we can't sit on our hands and suffer all the time.

I can appreciate many of you choosing not to take antidepressants, but I would hope that if you ever get in big time trouble with depression that you would run, not walk, to the nearest doctor for help and medication because people commit suicide unintentionally when in a depression. The problem is that sometimes people are unable to identify and accept that they are suffering from depression. It is not a weakness, it is a serious disease.

Just my humble opinion on this subject. Irish

What she said -- goes for me, too. To take your depression "temperature,"  find a copy of the Beck Depression Inventory -- about 18 items that are fairly obvious, so you have to be honest with taking it, and self scoring. Having given a lot of these, I know that people are sometimes more depressed than they realize. Others are somewhat less depressed than they think, compared to all those who take the test, or who are diagnosed. It is still a real change in mood.

Take care,
Soycoffee