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

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

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....:)

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!

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.

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. :eek:

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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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.

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?

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...

Sleep help
 

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

I thought my depression that was increading daily was coming from my post concussion syndrome(mild brain damadge) and the whole time it was from Lyrica. went off it due to eye problems and the biggest problem was my swelling legs. After going off the L I was soon NOT depressed at all. NEVER will take that stuff again!

Try asking your doc about cyclobenzaprine. It relaxes muscles, and helps you get to REM sleep. People with FMS have poor sleep because they are unable to get to REM sleep, and you may experience sudden jerks trying to fall asleep, or multiple wake ups during the night. Our body naturally produces melatonin, but as we grow older, the amount of melatonin we produces decreases. There are melatonin supplements on the market, and my doc says it is ok. Talk to you doctor. She/He can help with meds/supp., and may bring up water therapy. I hate taking prescription drugs, but until I am able to control my fibro, I have to.

My doctor recently went on a rant about Lyrica being marketed as a drug for Fibromyalgia. It is a treatment for nerve pain, and fibromyalgia pain is in the muscles and connective tissue, not nerves.
It was just prescribed for my dad for pain he gets in his feet from neuropathy. I'll have to let him know about the other side effects.

I have been on lyrica for a while and didn't realize how much it was helping me till I had to go off of it because it has not arrived yet from the patient assistance program. So I have been with out it for 3 days, and I can definitly feel my pain worsening with out it. I never had any of the side effect that it said you could.

But I have had others give me bad side effects. :D:D;)

I am really happy for you, happy that you have found something to work well with your pain. If I only can ask you to please make sure you pay attention to any (even if it seems small) detail that could be caused by the side effects. Particularly depression increases, thoughts of suicide, and (one thing I experienced) a layer of my taste buds went missing off of my tongue. All I could say is what looked like the shape of a penny flattened out into those oval shapes. (you know the ones, we put a penny in a machine and they flatten them in an oval shape) That is what my tongue looked like, had no idea it was connected to the Lyrica until I came off of it due to serious depresssion and suicidal thoughts. After some days of being off of it, my tongue healed itself. Thankfully.

But we all know that meds work differently for different people. So if this works great for you, then congrats. Hopefully you will be able to have some painfree days in your life. That is great.

M

Thanks - I have noticed a difference
 

I have noticed since I have went off, that I DO have more depression. Is that what you are saying you had as well when you went off? Or is that what you experienced when you were on Lyrica? I would love to be able to stay off of it, one less pain pill I have to take, but we will see. I have had muscle pains in my legs and arms that were gone when I was taking it, but maybe that will pass. Thanks for your reply! :winky::winky:

Well I am glad it is working for you. I had been MORE depressed while taking the medication and thoughts of suicide were terrible.

I hear what you are saying about one less pill to have to take. Sometimes I feel like I could open up my own pharmacy...:Sigh:

Hopefully soon we all will be able to be pain free w/o taking many medications at one time.

Well wishes to you and all who are able to experience the least bit of good life with this terrible disease.

M

The only problem I had with lyrica was it stopped working. At too high a dose, I did have very minor swelling.

I only ever have had suicidal thoughts on ADs and verapamil. I cannot take any ADs except elavil, which is NOT an SSRI.

And my docs have prescribed several ADs for my pain, which is how I found out (the hard way).

Oddly, neurontin was one I could not take - go figure, it is very similar to lyrica but I reponded so differently to the two meds.

Still, I can believe any med could have that effect on a person.

yikes!
 

Wow! This is crazy! I am sorry that you had to go through so much pain. I don't understand how someone can be allergic to iodine, which is a necessary component that our bodies need. I wonder if it is the type of iodine? Are you able to eat seaweed/kelp or other foods that have iodine in them? or is it just iodine supplements?

Can you put iodine on your skin?