Anyone try Savella ( Milnacipran )?

Discussion in 'Fibromyalgia Main Forum' started by jmq, May 12, 2009.

  1. jmq

    jmq New Member

    My Rhuemy gave me an article about it and asked ME to research it. LOL....I am like his assistant for educating his other FM patients. He knows how much I am TRYING to get better. He is so fustrated that he has not been able to help that much...just one medication after another. We all know that drill...

    Any ways, was wondering if any of you have tried this and what your experiences have been.

    Thanks so much,
  2. AuntTammie

    AuntTammie New Member

    you're not going to find anyone who has been on it for any length of time bc it just came out, but it is basically another on serotonin and norepenepherine

    unfortunately all most rheumy docs know to do is drug us, and most of us do not react very well to most of the drugs that they want to use.....some people do have some luck with some of them, so I won't say to give up on them, but personally I know to stay away....tried tons of them over the years and had bad reactions to pretty much everything
  3. 3gs

    3gs New Member

    ditto not going there
  4. cfsgeorge

    cfsgeorge New Member

    i don't understand why all the drugs approved by the fda for fms are all antidepressants. Would you treat someone with heart disease, diabetes, cancer, AIDS with a/d's? hell no! makes no sense at all.
  5. FM58

    FM58 New Member

    I heard that the results from the clinical trial for Savella were good.

    Keep in mind that all our bodies are individual. Each of us have our own set of symptoms & respond differently to interventions and medications. What may work for one person may or may not work for another.

    Savella is NOT used to treat depression, it is being marketed for FMS.

    Lyrica is another FDA approved medication for FMS and it is not an antidepressant. There are other meds in the pipeline.

    As individuals some people respond to vitamins, herbs, homeopathic and or/alternative types of treatment. Others do not fare as well. It is just a matter of trial and error to find the right mix of treatments (including meds) that is going to help your particular set of symptoms.

    Best of luck if you choose to try Savella. Please keep us updated.

  6. cfsgeorge

    cfsgeorge New Member

    which are like many of the newer A/D's like cymbalta. It may not be advertised as an A/D but it is a serotonin and norepinephrine re-uptake inhibitor and that fact you cannot change.

    yes, all drugs legal or not affect people differently. Some people will respond positively to an A/D while others will respond negatively. A/D type meds or re-uptake inhibitors can make you feel better, but it can never make your FMS or CFS better. there is a big difference between "feeling better" and actually "getting better." This is just another masking drug but with huge potenitials for horrible side-effects.

    Educate yourself, talk to your doc, and YOU decide what is best for YOU.
  7. hermitlady

    hermitlady Member

    Check out it's website, all documentation about Savella is available. Lots of info, I only read part of it.
  8. AuntTammie

    AuntTammie New Member

    there are a couple of reasons for the a/d push - one of which is purely profit....the other actually has some basis in science, and that is that the same chemicals that are responsible for moods are also responsible for sleep, pain, appetite, etc.....however, the drugs that can help with these (a/d) are also harmful to the mitochondria and aside from that, many people with our dd are hyper sensitive to meds, and wind up with more problems from these than are worth it
  9. TeaBisqit

    TeaBisqit Member

    They should be aiming immune boosting drugs at us instead of this stuff.

    I do terrible on AD's. They work the opposite on me and all I think of is ways to commit suicide on them. I've never forgotten it. And I remember thinking, why am I so depressed when I'm supposed to be on a happy pill. Awful.
  10. AuntTammie

    AuntTammie New Member

    of course they are going to say that the trials are good - they won't make money otherwise

    however, clinical trials are:
    - extremely short (no long term results or side effects, which can be quite different from short term)
    - unable to use most patients who actually have our illnesses bc most of us have a lot of different issues and overlapping conditions (and those automatically keep them out of controlled trials)
    -unable to show results/potential harmful effects when used in combo with other drugs
    -possibly not actually even be testing on the rt things, bc our illnesses have been redefined and improperly defined so much

    also, many people do not realize this, but the criteria for saying that a trial is successful is to have two studies (with any amt of people, so they could be extremely small) come out better than the placebo (that can actually mean as little as one percent better, and the placebo could be very low....for exp, if the placebo affects 30% of the people positively and the drug affects 31%, they can say it is successful)......they can do as many studies as they want in order to get the two successful studies, so if they need to do 100 studies to get 2 successful ones, they can, and the improvements do not have to be large, either (say you rate your fatigue as a 10 at the start and it goes to a 9 by the end, they will say it's successful).....and they don't really have much accountability either, as the people who stand to make the money are the ones controlling what info gets passed along

    (a good exp of this is that they knew that Prozac could cause weight gain, suicidal thoughts, INCREASED depression, and serotonin syndrome, among other issues, but they were able to push it as completely safe and to hide this info when getting it approved)

    and there have been quite a few instances (some of these very recent, some older) where the results have been presented quite inaccurately, or even made up altogether (like Lyrica)

    at a minimum, even if the positive results are shown accurately, it is entirely possible for a drug to be "proven" effective after only 2 out of 50 studies using 10 people in each (who are not really representative of the future patients) show that 30% have improved ever so slightly, when the placebo showed similar "improvements" in 28% of the people studied, and the studies only lasted for 4 weeks, so long term results and long term side effects/adverse reactions are not studied at all, nor are the possible combinations of those drugs with other drugs that people might very well be taking at the same time studied.....yeah that really sounds worth the risk!

    If you want to know more about stuff like this, read; Your Drug May Be Your Problem by Peter Breggin, MD and David Cohen, PhD....there are a lot of other sources that discuss similar things, too, and I have read some of them, but I do not have the names and titles sitting here to refer you to

    btw, I am not actually totally opposed to meds, though this post may make it sound that way.......I do believe that many drugs have helped many people, but I also believe that many have been very harmful and that when a drug first comes out, it is not proven, and for me, not worth the risk....I also think that people place way too much trust in the trials
    [This Message was Edited on 05/13/2009]
  11. cfsgeorge

    cfsgeorge New Member

    i understand the reasonings as you pointed out for pushing A/D's. let me throw in a few more words to think about.

    First off, we know way too little about the human brain and their neurotransmitters(3-4 still undiscovered neurotransmitters) to be fooling around with A/D's esp for its use for serious chronic diseases like CFS or FM where the cause and pathophysiology is still unknown. We're all playing with fire IMO.

    Secondly, any positive outcomes from A/D's in clinical trials comes from the fact that it makes people feel better by getting them "HIGH". it's really very similar to cocaine and ecstacy raising dopamine and serotonin levels except with A/D's you'll take everyday. now, what happens to a drug addict taking cocaine or ecstacy everyday? In the long term, the same endpoint will happen to both groups. believe it? i do.

    Finally, A/D positive outcomes in clinical trials are totally bogus. those that had bad reactions stopped while those who "felt better or high" stayed in the study. Feeling better on A/D's does not equate to "getting better". in no way do A/D's cure any disease. remember that. at best it can help mask some symptoms and at worse cause much more health problems than you could ever imagine. I have enough on my hands with CFS to start fooling around with my brain chemistry.
  12. AuntTammie

    AuntTammie New Member

    all very good points - although I don't exactly completely agree about getting high w/ a/d drugs, I do understand what you are to the trials, read what I just posted (rt above your most recent post) for more info about how messed up trials really are
  13. cfsgeorge

    cfsgeorge New Member

    I studied at Boston University School of Public Health and School of Medicine to get my MPH and MS. I also have a doctorate from another california university to get my DC. I know how to read and tear apart a flawed study. I really shake my head alot when i see trials and studies being posted, but i always remain silent cuz i really don't have the energy any more to dig and debate anyone. I don't want this place to be a "headache" for me as it's already kinda stresses me out here, you know what i mean? There are definitely some very flawed and biased studies from doctors trying to make $$$ off CFS and FM. shame!

    I'm just going to say a few words about the subject. Here is the thing about trials, it's just a way to get drug$ onto the market. It's already flawed to begin with when you see who is doing the trials and who is funding them. Those are biases and confounding variables in any study and that is what you first look for when you read any study. You always ask who are the authors and who is funding the study? Do they have a monetary incentive for a positive outcome? Other flaws are too small a sample size, bias interpretation, etc which occurs in bad studies.

    What will prove or dispprove a drug's efficacy and safety are independent studies. One published study whether positive or not is meaningless to scientist and epidemiologist. A study's results must be able to be reproduced numerous times(dozens and hundreds) by independent researchers before a correct conclusion can be made. Unfortunately, sometimes bad drugs kill or do much damage to the public for way too long before it can be pulled off the market.
  14. achinscribe

    achinscribe New Member

    I've been taking Savella since March and my results are mixed. I began the titration pack and noticed a definite improvement after 1 week (at 50 mgs. per day). My energy was much greater, pain was reduced, etc. Then a few days later I came down with a terrible stomach flu and couldn't hold much of anything down for almost 10 days, so I went back to the beginning of the titration pack because I'd been off the meds for more than 10 days. Same initial results second time, but after another week when I was up to 100 mgs. per day I was completely unable to sleep most nights, even if I doubled my Lunesta (an expensive solution and one that leaves me short of supply toward the end of the month...). Also, I began to sweat so copiously that my hair was dripping wet, as though I'd just come out of the shower. Oddly, it was only my head that was sweating. I still had more energy, but it was a jittery, antsy kind and the pain relief benefits tapered off. Pain relief never got better than so-so. Nothing that couldn't be achieved with something cheaper. My doctor had me cut down to 50 mgs. per day (25 mgs. twice a day) and the profuse sweating and jitters went away. I'm not about 3 weeks into the new dosing schedule and, as I said, the benefits are very moderate so far. Modest increase in energy but effect on pain seems to be diminishing. I've been in terrible pain for the past three days. And since you cannot combine Tramadol with Savella, there are not a lot of pain relief options. I was taking naproxen sodium (Aleve), but developed large black and clue marks on my arms and legs, so did some research, and it turns out Savella plus Aleve=clotting problems. So that's a no go. Motrin never has helped me much and I'm worried about effects of long term use on my liver. My doctor wants me to try to stay on it at least another 6 weeks. He says many patients don't see the benefits for at least 4 months. So I'm debating. I'm disappointed because I had great hopes for Savella, but I've been so miserable and the stuff is not cheap. AND my insurance company is giving me all kinds of grief about it, too. My deductible for it is now $75 per 30 day supply vs. $35 for every other drug....Except Lunesta, which is also now at a $75 deductible. I'm grateful to have the insurance. I don't want to even think about what it would total without, but I'm not working and this gets expensive. So to make a long story short (if it isn't already too late for that), my results have been mixed and inconsistent. But I've heard of other people who've done well, so maybe it's worth sticking it out a few more weeks. After 20 years of this cr#p, what's a few more weeks?
  15. joanierav

    joanierav Member

    hi, i like what you said, you make a lot of sense. and i understand what you mean by the word "high". i also call it well being. but it is a far cry from being well from cfs/and or fibro.
    ive felt better on many things ie: b-12 shots, zoloft, massage, chiro. i felt happy for that "high" time, but i just set myself up for a fall. now i just push myself , whenever the days arent so bad, and lay low when the days are really bad. i guess its called acceptance. im not chasing the almightly miracle treatment anymore. joanierav
  16. Jill

    Jill New Member

    I was part ofthe study for Savella - it has helped me tremendously especially with muscle aches in my legs!
  17. hensue

    hensue New Member

    I am on the pkg where you titrate up. I have not gone on to the next level because for one I cannot sleep.

    2. First day did good second day nothing terrible. 5th day hot jittery sweating and pain!!
    I can take all of it but the pain.

    Does it make people pee more? I have been getting up all night to pee.
    I do not think I can take the pain though.
    I really thought about trying to go on with it. As soon as I took my wellbutrin sr pain much better. Savella makes me feel sick.
    If I gave it two weeks or months what then??? Does it mess you up? Does it poop out like a lot of Ad's?
    Jill I am glad you are doing good. What dosage do you take? What kind of side effects?
    I know all about the hbp stuff.
    Please let me know thanks
  18. Doober

    Doober New Member

    But, this med IS an Anti-depressant that is being used in over 40 other countries as such and has been since 1996.

    My thinking is that someone in the Pharm business took a look at what the makers of Cymbalta were doing and decided to look for their own version.

    Rather than research a "new" drug, they found an existing one, bought the exclusive rights to use for whatever purpose they wanted in the United States and re-branded it for sale.

    Do a few studies and trials and next thing you know, it is being prescribed. With ALL new drugs, there are incentives for DRs to prescribe as much as they can, see if it works.

    Clinical trials these days are not something I trust too much because of the drive to profit. If the government or a 3rd party was doing the trials without input or involvement of the makers, then I may trust it a little more.

    Also, seeing that this was used since 1996 in other countries, why aren't the overall numbers from all those studies and finding being considered in the overall assessment? Like any A/D there has to be quite a lot to go over from those countries.

    Billions of people in this world and the seller of Savella is going to trust ONLY their study?

    Don't get me wrong, I am NOT trying to be negative here, but I would prefer to know the whole truth. We have had a few meds released in the US with Studies and trials supposidly done, only to me removed, I belive Celebrex was one?

    By the way, my Rheumy gave me a titration pack to bring home and then called me a few hours later and told me NOT to take it if I was taking Tramadol. I would HAVE to stop before I could take the Savella as he was uncomfortable with me doing both.

  19. ericdinbstn

    ericdinbstn New Member

    My rheumy prescribed it to me at a low dose to start (half of what the sample pack said to take). In the course of ramping up the medicine I discovered that a higher dosage was better for me. All of that said, since I've been taking it I've felt much better. Alas it hasn't allowed me to lose any of my meds YET but my life is totally different. I actually have one again! I'm sure it's just part of the cocktail that's working but the drug has made a difference for me. As for being the same as Cymbalta, while it is in the same class of drugs Savella is NOT an anti-depressant it was approved specifically for Fibro. I know we're all different but it has made a difference for me.

    Good luck,

  20. Doober

    Doober New Member

    You are correct, the FDA approved the use of Savella for Fibro. But, it IS an Anti depressant in europe.

    "Cymbalta is an antidepressant in a group of drugs called selective serotonin and norepinephrine reuptake inhibitors (SSNRIs). Cymbalta affects chemicals in the brain that may become unbalanced and cause depression."

    "Savella (milnacipran) is produced by Cypress Bioscience, Inc. and Forest Laboratories, Inc. It is a selective serotonin and norepinephrine reuptake inhibitor (SNRI) and is similar to many antidepressants currently on the market."

    Savella is a med that was used in Europe as an anti-depressant for over 10 years prior to getting approval for use in the United states. The american pharmacuetical company learned of this med and bought the rights to make and market in the United States.

    In fact, below you will find the link that shows that the European version of the FDA refused to approve the use of this med for Fibro. The American Pharm company did their own "Research" and trials, then presented their results to the FDA for approval.

    Glad to see that it is helping you. Like all meds, what helps some do not always help others and we both as well as numerous others here know this from experience.

    Please do not take me wrong on this. I am in no way condoning or denying the choice of taking this med. If it helps, great. One more person who will hopefully have a better day today than yesterday.

    When my DR gave me the titration pack and mentioned the words "New medication", I just had to see for myself. This was even after he called and told me not to take it. This is when I found the "european connection" of this med and that Cypress bought the right to produce and market in the US.

    Makes you wonder how much they paid though since the high cost of meds are based on the cost of overall research which was done by the original manufacturer?

    It just saddens me when the powerful pharm companies take advantage of those who suffer and sometime give false hope. They also fight so hard to keep the natural remedies out of our eyes including the use of medicinal marijuana(By the way, I take Tramadol and Soma among others, and wanted to point this out as not give the sense that I was an alternitive med user).

    [This Message was Edited on 06/15/2010]

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