Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 03-04-2008, 02:01 PM #1
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Default Big Shock to me! Warning re: Lyrica, Neurontin , etc.

I was at my rheumy today and he asked me how I was liking the Lyrica. I told him that I had came off of it after about a month because my depression worsened and I had very intensified suicide thoughts. Not to mention sores on my tongue. I told him that I progressively came off of it and things got better from that stand point.

Then he looked at me and asked: "You came to your own conclusion that your suicidal thoughts were worsening"?

Weird ?, I said "yes", why?

He told me that there has been increasing reports of those on Lyrica that have either reached their suicide threshold (whatever that means) or ones who have increased in suicidal behavior.

So I looked it up and here is a link you can read about the study. However please note that it seems like all these drugs are anti epileptic drugs that are used for pain and fibro.

http://www.fda.gov/cder/drug/InfoShe...lepticsHCP.htm

M
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Old 03-07-2008, 08:02 AM #2
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A very big thank you. I developed an anxiety disorder about a month after treating with trileptal. The doctors indicated that the drug couldn't be responsible, but I maintained it was. Heck, the condition alone leads to anxiety, but drug induced anxiety is h@%# on top of that. I'll be taking this to my doctors for sure.

Also, even patients can repost adverse events to the FDA. I signed up and reported mine since I didn't think my docs were doing so. I'd encourage everyone to do the same.

Cheers, Ellena
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Old 03-07-2008, 09:56 AM #3
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Wow... But, I can't say as I am totally surprised.. There is a huge flux of everyone jumping on the Lyrica bandwagon w/a huge part due to the media advertising it as the miracle drug for FM.

I tried Lyrica when it first came out a couple of yrs ago. I took it for a short while and it made me feel very loopy and gave me a sort of "out of body" feeling.
I do have to say tho, that I know of several members who take it and have no problems at all.

My Dr wonders why I am so hesitant to try a new med. I am getting to be a little fearful anymore. The side effects listed from so many drugs are scarier than being in the pain from not taking them.

Thanks for the info.... We just have to do what WE think is right for our own well being....
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Old 03-07-2008, 08:38 PM #4
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Quote:
Originally Posted by daisymay View Post

My Dr wonders why I am so hesitant to try a new med. I am getting to be a little fearful anymore. The side effects listed from so many drugs are scarier than being in the pain from not taking them.

Thanks for the info.... We just have to do what WE think is right for our own well being....
Just makes you wonder how much testing has been done on drugs, and how much of this info has been released. There are so many newer drugs that have had bad press about serious side effects- mental, heart and so on.
Why wouldn't you be very cautious about trying a new drug? You may be one of the few who has a serious reaction to it.
I'm taking a very cautious approach, and would like something to help me sleep, but from what I've read, some of those prescribed are serious drugs and are probably best avoided.
I don't trust pharmaceutical companies, or their testing, or the regulatory authorities who are meant to look out for our safety; and also GP's who don't really know the full details of the drugs they prescribe.
For instance, I told my GP on a couple of occasions that Tramadol seemed to keep me awake. He said that it usually made people sleepy, and discounted my observation. Since then, I have read of many similar experiences with this drug. Great mood improver-stay awake all night and feel good!
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Old 03-09-2008, 11:13 AM #5
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Just as we speak, another headliner regarding GSK and their products. Warnings that are just hidden under small writing or disregarded in studies.

Here is the link...
http://www.wral.com/business/local_t...story/2547347/

It almost makes me want to come off of everything and just see how much I can handle. Not necessarily the smart thing to do, but it was just a thought.
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Old 03-09-2008, 02:14 PM #6
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You all make good points about medications.

Things to keep in mind:

Interactions between meds you are already on
Not everyone reacts the same way to every medications
Some medications may need to be dosed differently for some people

I've had some pretty bizarre reactions to medications that have been "the safest" medications on the market. For instance, Zantac almost killed me. I had a severe anaphylactic reaction to it and the drug company, along with my doc and the ER, were totally shocked. In fact, the FDA and the drug company did a complete work up on me b/c no one had ever had a reaction to this drug during all the trials. I was the first. Lucky me...NOT!

I am also severely allergic to iodine. Not just a little bit, but a lot.

I have to take smaller than usual doses of a lot of the meds I take to treat my MS...b/c I am so med sensitive. We don't try new stuff on me.

So why am I in a clinical trial? Well, it's an autologous vaccine. They use my own blood to make the vaccine. Pretty safe, no side effects.

Being careful is a good idea.
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Old 03-09-2008, 08:36 PM #7
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Quote:
Originally Posted by hurtsobad73 View Post
Just as we speak, another headliner regarding GSK and their products. Warnings that are just hidden under small writing or disregarded in studies.

Here is the link...
http://www.wral.com/business/local_t...story/2547347/

It almost makes me want to come off of everything and just see how much I can handle. Not necessarily the smart thing to do, but it was just a thought.
Timely article.
Hereis just one quote from it:
"There can be no excuses from the pharmaceutical industry,” said Paul Farmer, chief executive of Mind, a health charity in England and Wales, in a statement. “The public must be able to have trust and confidence in the medicines they are taking. We need to be sure that the tragedies associated with Seroxat can never happen again. The best way to achieve this is for drug companies to publish all clinical trials data, making it available for scrutiny and review, and to inform prescribing decisions.”
You might be surprised at just what little adverse findings are revealed about their drugs.
Clinical trials-find out who sponsored them. Usually it's a drug company. You really need to be very cynical.
Mike More in Sicko rolled his eyes and laughed ironically in Sicko when the topic of pharmaceutical companies came up, indicating where a huge problem lies. Let's hope he tackles them next.
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Old 03-09-2008, 08:44 PM #8
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It almost makes me want to come off of everything and just see how much I can handle. Not necessarily the smart thing to do, but it was just a thought.
May be a very good tack to take. My daughter (severe M.E.) does this on a regular basis and is then able to find out what works and what doesn't.
Hard to tell for some of the minor things that are supposed to do good, but which don't have any real evidence, but for others it soon lets you know. If you go this way, do it slowly, and keep a diary record of what you have done and what results you notice.
I believe that the less we take the better. You have to take enough that you can live your life, but not lose control. And there may be better drugs for you than what you are on.
It is a very difficult path, as when you are ill you are not well placed to ask questions or do research, which takes ages. And then who do you trust?
I'm still trying to get the balance right. Sometimes I think that I should just take pain killers every 4 hours regardless, and then I think I should wait until it gets bad. But in that grey area between there is a dull, uncomfortable feeling that is not so much pain as general discomfort. Hard to justify a pain killer, but what else is there?
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Old 03-11-2008, 04:13 PM #9
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Peter~~ I took a Tramadol B4 bed the other night and I slept awful, if much at all.... It does not make me sleepy when I take it during the day either...
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Old 03-26-2008, 10:43 AM #10
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Quote:
Originally Posted by Peter B View Post
Just makes you wonder how much testing has been done on drugs, and how much of this info has been released. There are so many newer drugs that have had bad press about serious side effects- mental, heart and so on.
Why wouldn't you be very cautious about trying a new drug? You may be one of the few who has a serious reaction to it.
I'm taking a very cautious approach, and would like something to help me sleep, but from what I've read, some of those prescribed are serious drugs and are probably best avoided.
I don't trust pharmaceutical companies, or their testing, or the regulatory authorities who are meant to look out for our safety; and also GP's who don't really know the full details of the drugs they prescribe.
For instance, I told my GP on a couple of occasions that Tramadol seemed to keep me awake. He said that it usually made people sleepy, and discounted my observation. Since then, I have read of many similar experiences with this drug. Great mood improver-stay awake all night and feel good!

I'm new to this site and hope this is where I'm supposed to respond. I too have Fibro and find it hard to sleep. I take Advil PM ONLY when I know that I need to have a good nights sleep. I take only one pill. I take it around 8:30 - 9:00 p.m. I have it TOTALLY dark in the bedroom. I sleep pretty well. Only wake up once or twice and can fall back asleeep. Still have some side effects in the morning. Cannot handle meds well. Katie
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