NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Question for Mrs. D. regarding Cymbalta (https://www.neurotalk.org/peripheral-neuropathy/225518-question-regarding-cymbalta.html)

Apollo 09-03-2015 07:37 PM

Question for Mrs. D. regarding Cymbalta
 
September 3, 2015

Dear Mrs. D:

I am dealing with a perplexing problem that I hope you may be able to shed some light on.

I began using Cymbalta in 2005 at age 46 shortly after it first came to market for my small-fiber pain (caused by Lyme Disease). I used it on an as-needed basis (generally several months at a time) with great results (an overall average of 75% fewer days in pain).

Once I had been feeling better for a while I would then taper myself off, so that I generally had at least several months break completely off it. I continued this successful pattern as needed from 2005 through 2010 (when I was 51 years old).

Fortunately, after 2011, I began getting some lasting resolution in the S.F. pain, so I began using Cymbalta with less overall frequency and longer breaks off it.

However, in 2012 (at age 53) I felt the need to use it again twice during that year nine months apart. Unfortunately, to my surprise, I found that I got little or no benefit from it after 5-6 weeks on it at 60mgs full-strength both times that year.

I also tried it once during 2013 as well, and again had no benefit (just awful sweating and sexual issues).

Two years then when by off it, and I again tried using it this summer for five weeks, but again without benefit (at age 55).

I have certainly had plenty of time off Cymbalta to achieve a drug holiday, so I just do not understand what is going on. My underlying S.F. neuropathy has also been relatively stable.

Cymbalta 60mg has always been my magic bullet to fall back on if I ever have a serious stretch of time in pain, and I am sorry to see that it suddenly stopped working circa 2012.

Can you offer any insights into what might have happened?

Thank you!

David

mrsD 09-04-2015 08:16 AM

Well... there are posts on the net discussing antidepressants losing effectiveness. Seems to be quite common.

But I think that Cymbalta is not a great med to begin with. It has been hyped and promoted, but not many people "like" it or have success with it.

Drugs that work on neurotransmitters, which are FDA approved, are not really well understood as to how they work. Because of this there is still no real understanding of how Cymbalta works on pain (if it does at all).

There are some theories that drugs that work on receptors, over time induce the cells to make MORE receptors. This is thought to be a survival mechanism. So that when the drug is stopped it leaves MORE receptors behind, so that if you restart the drug later in time, you have to fill more sites to get effects, hence needing larger doses.

This has been demostrated with opioids, that the glial cells in the brain stimulate further mu receptors over time. I think this may hold true for other drugs that affect neurotransmitter receptors and levels.

I think most people do not understand how little is known about powerful drugs like Cymbalta and other antidepressants. This is also true of gabapentin and Lyrica. It took many years, and many patients to have difficulties with withdrawal because of this lack of knowledge.

Apollo 09-04-2015 10:53 AM

Quote:

Originally Posted by mrsD (Post 1168501)
Well... there are posts on the net discussing antidepressants losing effectiveness. Seems to be quite common.

But I think that Cymbalta is not a great med to begin with. It has been hyped and promoted, but not many people "like" it or have success with it.

Drugs that work on neurotransmitters, which are FDA approved, are not really well understood as to how they work. Because of this there is still no real understanding of how Cymbalta works on pain (if it does at all).

There are some theories that drugs that work on receptors, over time induce the cells to make MORE receptors. This is thought to be a survival mechanism. So that when the drug is stopped it leaves MORE receptors behind, so that if you restart the drug later in time, you have to fill more sites to get effects, hence needing larger doses.

This has been demostrated with opioids, that the glial cells in the brain stimulate further mu receptors over time. I think this may hold true for other drugs that affect neurotransmitter receptors and levels.

I think most people do not understand how little is known about powerful drugs like Cymbalta and other antidepressants. This is also true of gabapentin and Lyrica. It took many years, and many patients to have difficulties with withdrawal because of this lack of knowledge.





Many thanks for your insights, Mrs. D.

I know that drugs often create a tolerance issue over time, which is why they should be withdrawn occasionally via a "drug holiday". That said, I have certainly had enough lengthy breaks in usage to allow the body to recognize its re-introduction as a "new" drug.

Hence, my confusion.

I should also emphasize that from 2005 through 2010-2011 I did get a real and lasting improvement in my SFN symptoms, starting about the 3-week point at full strength.

I do have Lyrica as a fall-back as needed, but am very disappointed about the Cymbalta's loss of effectiveness!

Are there any other drugs that you feel are effective for SFN?

Thanks!

David

mrsD 09-04-2015 11:02 AM

Well, David, I think you need to understand that these drugs were put on the market without any real research or understanding of what they do long term to the cells of the body.

The testing for them does not cover long time periods, in the final clinical trials. Hence no one knows what they are doing to people basically.

If your body has changed permanently when using the drug before, then your response now, will be altered. There is a huge hubris present with marketing these drugs to people. And given the different neurotransmitter status of each person, these drugs will have different effects in everyone.

As you age, your brain changes too... so that must be factored into any situation with a drug.

If you were given a generic version, you could try the brand name again. But other than that, I don't think there is an answer to your question. You could call Lilly up and talk to a medical consultant...maybe they would have an answer for you.

Apollo 09-04-2015 03:26 PM

Quote:

Originally Posted by mrsD (Post 1168553)
Well, David, I think you need to understand that these drugs were put on the market without any real research or understanding of what they do long term to the cells of the body.

The testing for them does not cover long time periods, in the final clinical trials. Hence no one knows what they are doing to people basically.

If your body has changed permanently when using the drug before, then your response now, will be altered. There is a huge hubris present with marketing these drugs to people. And given the different neurotransmitter status of each person, these drugs will have different effects in everyone.

As you age, your brain changes too... so that must be factored into any situation with a drug.

If you were given a generic version, you could try the brand name again. But other than that, I don't think there is an answer to your question. You could call Lilly up and talk to a medical consultant...maybe they would have an answer for you.







Many thanks!

David

dancinglady 09-04-2015 05:20 PM

Quote:

Originally Posted by mrsD (Post 1168553)
Well, David, I think you need to understand that these drugs were put on the market without any real research or understanding of what they do long term to the cells of the body.

The testing for them does not cover long time periods, in the final clinical trials. Hence no one knows what they are doing to people basically.

If your body has changed permanently when using the drug before, then your response now, will be altered. There is a huge hubris present with marketing these drugs to people. And given the different neurotransmitter status of each person, these drugs will have different effects in everyone.

As you age, your brain changes too... so that must be factored into any situation with a drug.

If you were given a generic version, you could try the brand name again. But other than that, I don't think there is an answer to your question. You could call Lilly up and talk to a medical consultant...maybe they would have an answer for you.

So Mrs. D why are there so many people on cymbalta? I worked in healthcare for 12 years so just checking my experience with you. I believe the drug companies pay so many kickback to the docs that the highest payer gets their drugs into all of us. If they lose a couple patients it is just the cost of doing business. Do you agree??

mrsD 09-04-2015 06:26 PM

At first there were many people on Cymbalta....but quickly the side effects became noticeable to many. They tried to discontinue and it was not easy for them. There are many accounts on YouTube and on the net about discontinuance problems with this drug.

But there are some who claim to do well with it, at least in the beginning. Now that it is available generically the visits by the reps will be gone, and much incentive lost to give it. (no more $$ for calling doctor colleagues, no more text books, no more free lunches, etc, and no more "toys".
Lilly has always maintained an aggressive sales force... so much of the success I believe is due to that.
Cafepharma is a good resource to read where the reps talk about their jobs:
http://cafepharma.com/boards/forums/eli-lilly.25/

There are some trolls there, but many of the posts I find interesting. Back in my day Lilly reps and others were always either doctors or pharmacists. Now NONE of them are. In fact I knew a PharmD at work who applied and wasn't even given an interview. They only hire basically business grads these days.
Now why is that some may ask? Hint== The Lilly board at Cafepharma has nicknamed their own company as WeLie Lilly!

http://www.peoplespharmacy.com/2012/...ts-withdrawal/

Cymbalta had a death in the clinical trials. And it is the only antidepressant with liver damage as a serious possibility today.

This is an FDA document from 2009....
http://www.fda.gov/downloads/Advisor.../UCM172866.pdf

More secrets about Cymbalta:
http://www.slate.com/articles/health...g_secrets.html

KnowNothingJon 09-04-2015 08:50 PM

I tried Cymbalta at a 30 mg dose on a cave just to at least address the option with my neurologist.

I was and am having issues with fatigue. He wanted me to see the power of its energy. It felt like someone was pushing me on the shoulder, nudging me, "hey, you", an uncomfortable energy.

I only gave it that one month at half dose. In my mind there was nothing more to try or get used to for me.

My primary commented that "why *chuckle* that isn't even a therapuetic dose". I basically shut down for the rest of that appointment rather stunned that he didn't understand it was a side effect test dosage.

I am happy for those it works for, as I am for anything else that does even if I didn't have the same result. It is downright maddening getting some understanding at times, though.


All times are GMT -5. The time now is 10:28 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.