savella nearly killed me

Normal, I was NOT on any other meds when I took Savella yet I still had problems with it. I took it through a clinical trial with some of my support group friends. In order to participate, you could not be on any other meds, they made you stop everything for weeks before you could even start the trial.

Almost everyone I knew in the study dropped out. Most dropped out due to rapid heart rate, elevated blood pressure, and/or severe stomach issues. Six of us were in the study, five dropped out. One of the five was on placebo, it wasn't helping so she quit the study. One friend stayed in despite the side effects. It helped him go back to work and function better. He's been on it for a few years now and still considers quitting due to the sexual side effects that continue.

Back in the early days of the clinical trials, the company's stock dropped because the first phase III trials were not showing this drug to benefit most fibro patients. They were not getting the desired pain relief or it stopped working in a few weeks. Then suddenly, it was a perfect miracle drug that would help us all. When people dropped out of this study for any reason, they were listed as non-responders. Someone involved in the study told me that too many people were dropping out due to the side effects, they were having trouble keeping enough people in the study. I wonder if the testing suddenly became successful because they stopped counting the drop-outs as non-responders.

I know this drug has helped some people but I wonder how many it has harmed. How many people like moonmatrix have been put through expensive tests or had to start expensive meds due to Savella. The docs are not aware of how intense this med is.

Dagger,

Thanks for the important information about Savella. I beleive that you are on to something when you say that they changed the status of the drug and didn't count the ones who dropped out due to side effects being intolerable. That just isn't right, people wouldn't have known this if they didn't do an intense study of the medication.

It is interesting that you were in on the clinical trial of the medication. I can kind of say I know somebody who was on a drug trial. I always wondered how you participate in these things. I wouldn't have been able to go off all other medicaions though like you did. So I couldn't be involved in something like that. But I think it was cool that you were and that we are getting some first hand information.

Please do post more. Do you still take savella, does it help you? Did you get any of the side effects? What were they? Did you get rapid heartbeat? I like the thought of losing weight, but I wouldn't want the anxiety and rapid heartbeat and high blood pressure to go with it. I take adderall and that should be helping me lose wieght, but it doesn't. Though it does keep me awake. And the blood pressure pill I take curbs the appetite, so that helps. I am rambling.

Hugs, Karen

Sorry guys I came over a little strong. The Drs. just really scare me because they want us to take so MANY drugs at once. And you feel like if you dont you are not doing all you can to feel better. Then all the side effects and drug interactions. I for one am really so very very tired of all the test and meds and IF YOU TAKE OR DO THIS CORRECTLY YOU WILL FEEL BETTER. Five solid years of every extra penny I have and all the time and the only thing that has even helped at all is the Savella. It helps my fibro and IBS. However I only take 75 a day. Still have alot of pain sitting at work but I can stay awake and out of the bathroom  If it is dangerous I need to know, thanks for posting about it. Normal

Normal,

I do not think it is dangerous. I think some people react differently to different medications. Just like Levaquin causing tendon damage to some people. I've taken it many times and never had tendon damage. When you pick up your medication, read the pamphlet. You will be surprised at all the side effects that HAS to be listed, but that most people do not get.

I had to drop out of the study because it raised my heart rate and blood pressure up way too much. I had hot flashes, insomnia, elevated blood pressure and heart rate. The study starts just like they have people start now, you slowly work up to the dosage. I am pretty sure I was on 100 mg/day (50mg X 2) but we couldn't verify the dosage, just that it wasn't the placebo. The study doc offered me meds to slow down my heart rate and lower my blood pressure but I didn't want to add meds to deal with side effects. The study doc said that if I was just a regular patient, she'd suggest trying a lower dose but you can't do that in a study.

I found out about the study though my local support group. Some of us decided to give it a try. I wasn't on any meds at the time and I passed their screening so I was accepted for the study. They were very thorough and really monitored us. We had an electric pain diary that beeped randomly throughout the day requiring you to add your fatigue and pain levels. At the end of the week, it asked you a lot of detailed questions about your week. We used the diary for a few weeks before we actually started the meds so they had a baseline, plus they wanted to see if we would be compliant with the diary. I joined this study because it was a med used in Europe for about 10 years so I was able to look up the safety record.

We all knew whether or not we were on placebo because a pharmacist friend told us how to tell the difference. I had to take 2 capsules in the am and 2 in the pm. I believe one am and one pm pill was a placebo and the other was medication. They were testing 100 and 200 mg/day. I made a few hundred dollars and got a pretty detailed physical plus a lot of blood work done for free. If you made it through the study, you made a nice bit of money plus you got the med for free for a few years. If you were on the placebo, you were given the opportunity to take the med when the study ended.

When I mentioned that this pill harms people, I was thinking more about financially. If your doc doesn't realize that the cardiac stuff is from the med, you may end up having a lot of very expensive and maybe invasive tests. People may end up on beta blockers or other BP meds thinking they have developed high blood pressure when it is really just a side effect. As we all know, some docs prescribe meds they know very little about. When we are ill, especially with brain fog, we may not realize our docs don't know as much about our meds as we would like.

I am not confident that this med works as well as the drug company claims because it did not work in the first phase III study. Even the company admits this. Their stock dropped and they were in serious financial trouble since this was the only med they had in the works. Apparently it worked well enough in the next two phase III studies to get FDA approval but I haven't been able to find out what was done differently in the next studies. If it didn't work for fibro, they planned to test it for IBS.

All meds have side effects and we, as patients, need to do our research. I don't know if this drug is any more dangerous than other meds many of us use. It does seem to have more intense side effects at the beginning than others I've read about.

I don't want to scare anyone, I know this med has helped some people and we all deserve the chance to find something that helps us. I would consider trying it (at a really low dosage) if my condition worsened enough to need it.

I know more about this drug than any other fibro med only because I was in the study and I followed the reports for a while. I have absolutely no idea if Lyrica, Cymbalta, or any other med commonly used for fibro had the same problems in their phase III trials.

I'm so sorry you went through this as well - it's so scary!  You definitely need to take some sort of action.

I went to a new rheumy and she told me that the pain was psychological and prescribed Savella.  I am already on Lexapro so I called my psychiatrist and he said, in no uncertain terms, not to take the Savella as it would have a reaction with the Lexapro.

Don't even talk to me about Lyraca - it's just basically neurontin with a different name.  I have had 3 doctors try to get me to take it, even AFTER I told them that neurontin had caused suicidal thoughts and actions for me 9 years ago.  Why are these doctors so uneducated and WHY don't they take us seriously?

Grrrrr......

I have just finished reading 2 pages of this posting.  I am one of those who won't try any meds Phobic  I guess.  I survive on suppliments mainly under the care of a naturopath. 

My comment is:  Why in the world don't doctors work along side pharmacists?  I realize they are truly two different professions but they NEED each other for the sake of the patient.  If the doctor was required to have a pharmacist go over all meds a patient is taking or is about to be prescribed, at each visit, I believe we would have alot fewer prescription problems and/or side effects.  Just my opinion.

Yo-yo

Try iguard online to keep track of the meds and interactions, it is very informative. I learned which meds to take in the morning and which ones to use at night to keep the interactions down to a minumum. If I know what meds my drs have already mentioned as a possibility I trype them in to check so I can mention it when they give me a new script. It i very easy to add and delete meds and you also get updates if a med is recalled or new warnings come out. I have thought about asking to try Savella, my other problems are under control for the most part, but the fibro is still going strong as is the fatigue.

I was on Savella for about 10 days and had a severe reaction, as in my BP jacking up to 215/120 (stroke level) from 80/50 and migraines as well as visual disturbances and fainting spells. Unfortunately it did nothing for my fibro either.
I KNOW it helps other people, I've seen it and I am so glad for them, maybe even a bit jealous. I honestly suggest if your doctor thinks you should try it, then do so. Just keep track of your blood pressure, even if you don't have your own cuff. Just stop by a pharmacy that has one, but be sure to keep track of it in a little note book, I have one specifically for my fibro symptoms. (With my memory I'd never remember everything for a dr appt LOL) Which reminds me, when my grandmother was DXed with diabetes my mother had me print out several pages from Excel for each day with the top column marking the times and the first row marking her blood sugar and her blood pressure as well as her medications. My grandmother also has Alzheimer's so it is VERY important for her to write everything down.
Thank you, Okie, for telling us about iguard online, I will definitely be checking it out :)

I became dizzy from my savella and before I could catch myself fell face-first into (& through) a door breaking my neck which had to be surgically screwed back together. What good are warnings about possible side-effects if they prove lethal the first time you experience them? In addition, listing 20 possible side-effects is useless and should not be a protection for the drug-maker from possible eventual lawsuits.

Hi, Help my daughter. Welcome.

What an awful experience you and your daughter went through! It's incredible that none of the doctors involved knew about the possible side effects of Savella. As a mother myself, I know I would have been scared to death and seeing a really bright red!!

I'm so glad you came across this thread while searching for answers. Since it's really old, though, I am going to lock it (that's what we do, eventually.) Moonmatrix hasn't posted on the forum for a few years - but you never know, she might still pop in once in awhile, and see how her post helped your daughter. .

Have a good day - and I hope your daughter starts feeling lots better...

Debbie