Discussion in 'Fibromyalgia Main Forum' started by siestasuze, Mar 9, 2010.

  1. siestasuze

    siestasuze New Member

    Since I started taking SAVELLA, I was SOOOOO thrilled with how well it worked!! I started Savella last Aug. 09. So on for 7 months now 50mg 2 x day. Due to continuous side effects of heart racing (stays at least 100 or higher AT REST) elevated blood pressure, chest pain/tightness. I've been trying to find ways to help d/c these side effects. SO......

    I first tried cutting dosing to 25mg 4 x day and taking with my "muscle relaxer" (which used to slow down my heart rate) with no success. For past few weeks tried decreasing and was down to 25mg 2 x day, thinking maybe I could just wean completely off, the heart rate still high with decrease in other side effects. BUT--Depression been HORRIBLE and pain alot worse.

    So last two days I'[ve increased to 25mg 3 x day (75mg/day), mood and pain slightly better, but the Darned Side Effects are already acting up. I almost want to keep taking savella and ask Dr. to prescribe RX for heart rate/BP. (not that she would?) **** BUT IS THIS CRAZY IDEA???? ******

    I'd love some feedback from ANYONE having these same problems with SAVELLA.

    NOTE: I am well aware of FDA being pushed to take off the market and all, I'm just hoping there may be another solution to a medication that really WORKS!
  2. debilyn

    debilyn New Member

    I've been taking it for about three months. I've tried everything: lyrica, cymbalta, tramadol. The Savella is the only one that works, that gives some energy and pain control through , but the side effects are miserable. I have messed around with the dose, and now take 50 mg in the morning and 25 mg at night for a total of 75 mg. That is the least amount I can take for some benefit and hopefully fewer side effects.

    I saw my doctor yesterday, and we decided to give it one more month. If the side effects don't lessen, I'll have to wean off. I usually have low blood pressure; with the Savella it's about normal, so that's not a big deal. What bothers me most is the tingly limbs and the heat flushes/sweating episodes where my heart rate goes a higher than usual, and I feel like I might pass out.

    One day last week, I was at a conference for work and needed not to have an "episode"; when I felt one coming on, I took a tiny bit of xanax, .25 mg, and that helped a lot. But I refuse to do that every day, take the xanax to minimize the bad effects of the Savella.

    Yesterday I didn't have any "episodes," so I'm hoping they're going away now. That's my expereince, so far, with Savella.


    [This Message was Edited on 03/10/2010]
  3. siestasuze

    siestasuze New Member

    Appreciate the reply to my post. It's hard not to have a Love Hate attitude with this RX!

    My normal blood pressure has always been low as well. And now it seems to be all over the board. I haven't experienced the "tingly limbs", not really hot flashes (althouth i am currently in "surgical induced" menopause &treated with hormone patch), but I can feel my BP rising when all of a sudden I feel this HOT FLUSHING from my neck up to my face and it turns very red.

    What were your doctors concerns? The heart racing and the BP?

    I had an ER visit last November due to these same side effects and the ER dr. told me he WOULD NOT take a beta blocker rx to counteract the BP since it is due to side effects of another medicine (savella).

    I go back to my PCP in couple of weeks, so who knows???

    Thanks again! suze
  4. debilyn

    debilyn New Member

    My doctor isn't a big fan of Savella. I asked him if I could try it, and reluctantly he said okay. He said that I'm his only patient that has had any luck with it. He'd be happy if I quit it, but it helps me function during the day; sometimes I nearly feel "normal" again.

    I know exactly what you're talking about, the hot flushing. It happens to me the same way. I should test my BP when that happens. I never have checked it when my face, ears, and chest are all red and flushed. I have after, and it's been pretty close to normal. I have gotten better at feeling those flushings/episodes coming on, and with biofeed back breathing techniques, for the most part, I've been able to deter them from being as bad as they were when I first started the drug.

    I just wish the drug companies could make a drug without the horrible side effects.

  5. tig519

    tig519 Member

    I actually had to stop. Although it did work well, the fact that my bp was shooting up to 170 over 95 was enough to make me stop (BP usually 110/70). I went back to lyrica.

    Ironically, my doctor said none of her other patients have reported those side effects. I encouraged her to ask them when they come back in. Some may not be willing to call because of the benefits.

    Good luck.
  6. luv2float

    luv2float New Member

    I just posted the same problems before reading your comment. I need this drug but are the side affects worth it? Why can't they come out with something to help us completely without the side affects! I'm so frustrated and don't know what to do.
  7. realisticidealst

    realisticidealst New Member

    I just started Savella about 3 weeks ago and it's working better than any other drugs I've taken. I've been reading up on it on here and I'm surprised how many people seem to be suffering from such horrible side effects. I haven't had any side effects. I thought I'd get the nausea, but I haven't at all. Perhaps I am getting some headaches, but they aren't that bad or that often. It is also helping me so much. I've been in a flare up for several months, and the past few weeks before I started the Savella I was nearly incapacitated. I'm still in some pain, but it's much more defuse and not that bad, especially compared to what I'm used to. Also, I'm sleeping better, which seems strange because none of the sites seem to mention sleep. I used to go to sleep around 3-4am every night, even when I didn't get enough sleep the night before. Now I'm tired AND actually wanting to go to sleep between 12-1am. It's wonderful. I'm curious if anyone else is experiencing what I am? Meaning hardly any symptoms and improved sleep.


  8. luv2float

    luv2float New Member

    I was so happy when I first started taking Savella. It is the first drug that actually made my pain manageable. After about a month, the side affects started. Same as you, rapid pulse, high blood pressure, terrible hot flashes. My doc advised me to get off of it for two weeks and see what happened. The pain came back ten-fold but the b.p. dropped and the hot flashes went away. He had me start back up on 1/2 the dose. Well, after 3 wks, the side affects came back again. You can't screw around with high blood pressure, it can kill you or at least give you a heart attack. I had to go back off of it. Got a second doctors opinion and he said he's had several patients with the same problems. Maybe someday they'll find something to help us, but until then, I'm off Savella. I recommend you do the same, the pain won't kill us, but the pills can do more harm then good.
  9. clementyne

    clementyne New Member

    But I am really curious to know what has happened in the past year+?
    Are any of you still taking Savella?

    If you have read my recent posts you know that I am over the moon with the results I have had in the past 13 days.

    One difference for me, perhaps is that I have had high blood pressure & rapid rate heart for many years & am already on drugs to control these & will be for the rest of my life as they are unrelated to weight/diet/fitness.

    I am a bit distressed that I now feel my Dr. did not properly inform me of the side effects.

    I look forward to hearing what has happened.

  10. lvjesus

    lvjesus Member

    My doc put me on it for my HORRIBLE fatigue. It works great for me most of the time. I am able to work, shop, etc. It has mostly given me my life back to some extent. In the beginning once I was up the 50mg dose twice a day it did help tremendously with the pain. After some time, that went away and upping to 75 & even 100 twice a day did not work. In fact the larger dose "settled" in my back muscles giving me terrible soreness that no pain reliever, OTC or Rx, would touch.

    My side effects went away in time, but were mostly "warm flushes" (I'm 47 so have some issues with hot flashes anyway), heartburn and a slight rash on the left side of my body. My blood pressure is up some and I did not think about it being the Savella, although it is on the high side of normal.

    The mere mention of it being pulled by the FDA scares me to death. I had gotten worse to the point of struggling to work even my 6 1/2 hrs a day. I am PRAYING that it WILL NOT get pulled. Hope you can work it out. I love it.
  11. tig519

    tig519 Member

    My BP went down some after about 6 weeks off of Savella, but not enough for my doc. Keep in mind my BP was 110/70 before starting Savella. While on it, it was up to 170/95 which is when I stopped. It went down to 155/90. After being put on BP meds, I'm now back down to 110/70.

    For those who may think it was some other factor- this all happened in a 4 month span... also had multiple tests to ensure we eliminated other causes.

    I fully expect that we will see this drug pulled and start seeing commercials for "Did you or someone you know use Savella and now have high BP- if you do, contact XXX Law Offices."

    BP is nothing to fool with. It's a killer.
    [This Message was Edited on 01/07/2012]
  12. siestasuze

    siestasuze New Member

    Hi Tyne,

    Yeah, I HATED having to stop the Savella. It worked so Incredible for me, as I had posted when I was first trying it for my fibro. One of the GOOD side effects, which is really odd, was I didn't take any antidepressants while on Savella.?

    Had been on every antidepressant on the market over the past 15 years for severe Depression. But while on the Savella, it was like a miracle---no depression at all! Off the Savella and back on antidepressants and pain meds.

    My Dr. did stop the Savella. However, I have to admit, there were times during the first 6 months after being off it, that I would "try with low dose of it, from my left over pills, but before I could start feeling any pain relief, my heart rate jumped up as did my BP. Really stupid idea, but I was hoping that maybe eventually I'd be able to tolerate it.

    It scared me so bad the last time, that I flushed the pills down the toilet! However, since stopping the Savella, after a few weeks, BP and heart rate back to normal.

    I'm on narcotics for my pain, and I can honestly say that I have NEVER "craved" them like I "crave" the SAVELLA due to it being the best RX I've ever taken as far as pain relief, energy, depression, and just feeling like I had my life Back! I know that may sound weird, but it's true.

    I really think you should be monitoring your BP and heart rate while on this med, especially since you already take Rx for these conditions anyway. Have you talked with your Dr about it yet?

    Good luck, best wishes for a healthy new year. Keep us posted!

    [This Message was Edited on 01/09/2012]
  13. clementyne

    clementyne New Member

    I have a blood pressure cuff @ home which also reads my heart rate so I check pretty regularly. So far I haven't had any problems there. I've been taking the Savella for almost 5 weeks & my B.P. has been up slightly a few time. Same with pulse. But that has happened even before the Savella.

    I also have hot flashes due to menopause & I have had a couple recently that made my cheeks so red & hot that afterwards I felt like I had a sunburn!

    It seems that the Savella isn't working as well as it did. I am definitely in less pain but I do still have pain. The 1st few weeks my pain was gone. I also take narcotics for pain relief & I have cut back. Most days I take 1/2 of what I was taking.

    I haven't noticed any increase in energy, though. In fact the other day, I slept almost the whole day! My DH says he thinks I have more energy so maybe I do.

    Thankfully, I haven't had to deal with depression throughout this DD. Which is not to say that being in constant pain doesn't get me down sometimes but I don't think that's the same thing.

    I know what you mean about craving Savella! Who wouldn't!?

    I have also lost some weight since being on Savella. I don't know for sure that that has anything to do with it but I just don't seem to be as hungry since I've been on it.

    I feel like my Dr. did not fully inform me. He did tell me - but only after I asked & he didn't go into any details about it at all. Another thing - he started me out on 50 mg's twice a day. I have read here that everyone started on a low dose & worked up. I have tried to find the reason for this but haven't found out anything except that that is the common practice.

    Well, thanx again for taking the time to respond.

    [This Message was Edited on 01/10/2012]
    [This Message was Edited on 01/10/2012]
  14. rkidd3423

    rkidd3423 New Member

    I took Savella in January, 2010. It never helped with the pain or energy. I had hot flashes A LOT! It also took away my appetite and many days made me get sick. On a good note...I dropped 30 pounds in 2 months and I didn't put it back on! I guess when you are can look at the bright side even if you were very sick!!! :)

  15. lvjesus

    lvjesus Member

    There are many, many drugs that ppl have tried here that had horrible effects for them - Lyrica, Cymbalta, etc - that don't get pulled. To be honest with you, it sounds like you are HOPING it gets pulled, but I fear what will happen to me if it does. Incidentally, my BP is fine. I took it last night and it is in the low normal like it always has been.

    I have NO heart racing or any other side effects now that I have been on it. Most days I feel almost normal as far as energy is concerned. Pain meds control my pain for the most part, so that is not essential to me.

    Every med has side effects bad enough to keep some from using it but don't begrudge it to those it works for.