anyone trying the newest med…

    • February 24, 2010 at 11:04 pm


      It is similar to Cymbalta (couldnt handle that one) but it acts more on the norepinephrine than on serotonin. I just started it last night (small dose that ramps up to 50mg twice a day over two weeks) and slept so well for the first time in a LONG time! I felt less pain today (yesterday was a really bad day, and have had many over the past several months) which could be just a coincidence considering the low dose and just starting out. So far side effects have been minimal (again low dose so we will see), and tolerable which is saying a lot since I tend to react a bit strongly to meds these days.
      I am now on wellbutrin xl 150mg a day for the depression, xanax for the anxiety and to keep things at a dull roar, and we added Savella yesterday. Dr wanted to see if treating the nerve pain as if it were Fibro would be helpful. He also has each of the things I have tried documented, and my reactions to them too. Apparently the SSRI’s do not go over well with my system, but I am doing okay on the wellbutrin which acts on dopamine. And he wants to see if I do okay on Savella since its ssri part is less than the others. confused? Sorry. Anyhow, I am always iffy about meds, especially the “flavor of the day” and this one was just approved and made available for the treatment of fibro pain.
      Anyhow, I will be keeping a close eye on things over the next two weeks as I ramp up. I am hoping for less pain so I can start being creative again, spend more time with my kids, and stop feeling so bad about myself. If interested, I will post any changes or info as I go along. It might help someone else here when other things have not….which is why I have been dealing with the pain on my own all this time, I thought i was out of options since the usual stuff made me so miserable I couldn’t function or made me sick. Keeping my fingers crossed but hubby reminded me that today could just be a “good day”. True, very true. But it has been a nice one!
      Now if it does work, let’s hope ins will okay it since there is no generic and I am sure it is $$.


    • February 25, 2010 at 8:54 am

      Hi Lori,
      Glad you had a good day yesterday. Hope it is the new medicine and not just a good day, because then you will have many good days ahead!! Keep us posted!

    • Anonymous
      February 25, 2010 at 11:13 am


      I just looked it up and it looks like a lot of people have had favorable responses to this med, so I am keeping my fingers (and toes) crossed for you. I did see an abcnews article in Jan of this year, by some group wanting it off the market because it causes high blood pressure. You might want to keep an eye on your BP. I know that mine has been lowered due to this lovely GBS, so maybe that won’t be much of an issue for you. Good luck!

    • Anonymous
      February 28, 2010 at 12:14 pm


      Please keep us posted. I tried Cymbalta a couple of years ago and it was pure hell. So I have not even thought of trying anything with norepinephrine. I also tried Wellbutrin and that did not work for me. I take Celexa and amitryptiline – oh and Xanax (don’t know what I would do without that). What does this new med cost?

    • Anonymous
      February 28, 2010 at 1:25 pm

      [FONT=”Microsoft Sans Serif”]i am very interested in hearing about your experience with savella. it was prescribed to me, the starter pack, but i never took it. i have been holding off before starting yet a new drug, especially since i am off all cidp meds. as i continue to heal from the nerve damage already done when my cidp was active, i still have some pain– i’ve been keeping my eye on savella.

      best of luck with it– hope it keeps on working.


    • March 3, 2010 at 11:21 pm

      Ramped up to the 50mg 2x daily and am okay. Felt wonky at first, 2nd day I have felt a bit manic in the morning (take it with wellbutrin…apparently taking wellbutrin at night was contributing to not sleeping so I had to switch to mornings).

      Side effects:
      hot flashes
      bit manic
      slight nausea
      some extra tingling (tolerable)
      clean house (LOL)
      MUCH better mood
      and a headache soon after I take it. But it doesnt stick around.
      Now it also raised blood pressure and heart rate. I have only noticed this occasionally. Not a constant thing. Wondering if it will be a problem at the gym when I try to get back there. With raised BP and HR comes heavy breathing. Wish it counted as a cardio workout in a good way.
      Has also lessened my appetite. Nothing sounds good and I have to remember to eat something or my low blood sugar makes me feel crummy.

      I think I am going to stick with this. It hasnt taken away the pain 100%, but enough that I can function more and do a bit more on my own. Definitely had more good days recently than bad ones. OH and a huge one, I have slept so incredibly well at night since i started it!! Out like a light and feel rested and refreshed when I wake up. Talk about a huge relief! Seeing dawn and watching the late night line up was getting pretty lonely. Plus I didn’t sleep all day, I was only getting about 4-5 hours of sleep and walking around in a zombie state. Partially pain, partially taking meds at the wrong time, and mostly just plain miserable.

      It is worth a try to see if you can handle it if you have been unable to tolerate anything else. And that is saying a lot because I have had so much trouble with meds and honestly prefer not to bother with them and their side effects. But this has given me enough relief that I have been able to interact and spend quality time with my kids, clean my own house more often, feel more alive, and am so happy with the pain level going down. A dull roar I can tolerate.

      edited to add—have not been as short of breath either!! JUST realized that. It was becoming a bit scary for me, but since starting this I have not had as severe or as many episodes.

    • Anonymous
      March 4, 2010 at 1:05 am

      I am so glad this is working for you !!! I know you have been a pretty sick girl at times. This pain is something I fight all the time, and the sleep is about 4 hours a night or morning. I usually go to sleep about 5 or 6 and up at around 10 am and then wake myself up two or three times while changing postions in the bed. It is impossible for someone who is sick to function on that little bit of sleep. I will be watching for your progress, I pray, and lots of better days ahead for you.

      God bless you Lori,

    • April 3, 2010 at 4:41 pm

      Not certain how long i have been on the Savella, but have had two appts to discuss things with the dr. He is keep track of every little side effect either good or bad. I noticed break thru pain is awful! Meaning I can “push” myself and end up really really paying for it. New things to learn, still have to remember I have limitations regardless of pain tolerance or not.

      Still get hot flashes and sweating
      headache after taking it has gone away
      nausea after taking it has gone away
      lost 6 pounds so far and look forward to more once I get back to the gym
      MUCH happier. I told hubby that I think it is that my “I dont care” has kicked into overdrive. Not in a bad way, just not worrying over as much as I was.
      Sleeping is still okay. Had a very interesting night when I took less than my normal dose of xanax. SERIOUSLY bizarre dreams! Went thru the entire emotional spectrum that night. Woke up upset and agitated over the whole thing.
      No napping needed unless I am silly and over do it then I just head to bed earlier.

      I have a new diagnosis added to my list…fibro. Pain points all check out as do other symptoms. Dr said too many pain areas to be just GBS he thought, and since there can be cross overs with neuro/auto immune issues he checked me out for it. The Savella helps and I have mentioned it to my friend who has fibro as well. I will struggle thru the allergy problems I have gotten since GBS came into my life. No steroidal anything for me or my family threatened to move out! Anyhow, BP is normal and heart rate too unless I push it then it is quick to react. Another thing to learn and tuck away for future reference.

      That is about it for now. Off to straighten up the house and get ready for a photo shoot with a friend. Ooo did a portrait of another friend and he and his family loved it so much, they asked me to do some of their 19 year old son! Told em in lieu of payment, pay for printing and spread my name around.

      Happy Easter to those who celebrate and God Bless!


    • Anonymous
      April 5, 2010 at 10:14 am


      I am so happy for you that the Savella is helping your quality of life!! I have wondered about the fibro for you and for myself as well. You sound so much better and so productive. Just remember to take it easy and not overdo it….

    • April 16, 2010 at 2:06 pm


      Break thru pain is very painful!! Learning very quickly NOT to push myself no matter what I might feel like. It is a band aid plain and simple.

      I started having horrible nightmares, so real I would physically and emotionally react to them on “this side”. I can only assume this is the point the dr talked about when the meds get thru the blood brain barrier and get to doing their real work. Um okay…dont recall nightmares on the list of side effects. I could take a bit more xanax and it would be okay. But, on the nights I didn’t do that, and depending on how small the xanax dose was, resulted in [B]intense[/B] dreams I can not even describe. So I finally called it in, the doctor called me back personally instead of his nurse. We talked and he wanted me to stop the wellbutrin cold turkey…OMGosh!! He warned me of withdrawals and said if it was too much, to come in. Said it could be the piggyback effect of the Savella and Wellbutrin. Disappointed because mood wise I was doing so well (minus the over exaggerated PMS symptoms…we wont talk about that) and life seemed to be shiny and new again. I was okayed to up the dose of xanax for a while and we are aiming for a lower dose in the near future. Fine whatever.

      They say withdrawals can last a week to 8 weeks depending on some factors. And the withdrawals can be nasty. Nice…just what I needed. Hopefully the Savella fills in and everything is okay. If not, I am definitely calling for an appt!

    • Anonymous
      April 28, 2010 at 4:37 pm

      I am on Lyrica and Cymbalta, and was wondering if this, Savella, could possibley help my pain ? Thanks to the ones who answer and I am praying we all have better days ahead .


    • Anonymous
      May 2, 2010 at 1:08 pm

      Mason started this medication called Azathioprine, plus the other meds he has been on for 4 yrs. It has been almost 1 1/2 yrs since IVIG. We go back to our new Dr sat. Masons CIDP has moved up too his neck, bowels are stopping again. He has a large amount of reflux now (this started in Jan, when the neck damage began) weakness is back and leg cramps. Since Dr Maertens insistes he is cured, Dr Lawerece is talking about sending us to Mississippi for a second opinion. We had a endiscope and biopsy and Ph study last week. The painic attaks are back, they had to give him valum to sedate him last week. I wanted to believe it was goon, but deep down I new it was not. It has never gone up to the neck before, or trouble breathing. This scares the crap out of me. I have Facebook at work, I cant get on here as often as I would like. If you have facebook just and me there too. [email][/email] Thanks

    • May 30, 2010 at 1:48 pm

      I am so sorry to hear about Mason. I was really hoping things had turned around for the better with him. I will look you up on facebook. Mason is in my prayers!

      Savella is fine as long as I do not over do things, or am not experiencing my monthly. If it raises pain tolerance, let me tell you, I can not imagine what I would feel like if I was not on the medication!! This month has particularly difficult with stress, 2 monthlies, and more stress. At a couple of points I honestly thought I was relapsing. I found out it can be increased to 200mg a day, BUT that comes with increased risks. Cardio and liver. I haven’t had too much of the cardio issues—-racing heart, high blood pressure etc lately. And liver seems fine, no pain, no yellowing. Do I want to increase these risks or do I just deal? The liver thing scares me because of an increased risk of autoimmune issues anyhow. Of course the cardio scares me for obvious reasons. I have an appt on the 9th of june so I will discuss all of this with the dr and see what he has to say.
      I am also going to discuss going off of singulair after doing some research on it. I take it for shortness of breath that I feel is GBS related and it has helped. BUT the side effects have exasperated what I am already dealing with….increased depression, anxiety, mood swings, digestive problems, weight gain, tingling in extremities (as if I need more of that!!), and others. I want to see if things change for the better if I am off of it. I am just concerned about the shortness of breath that comes and goes. Never constant, and also the very tight feeling I get in my chest—tight band squeezing me—has been better ON the medication. I will ask about a rescue inhaler for those such moments since it is not constant. I have primatene mist on hand since before starting singulair and it helped except it is a major stimulant!! I dont deal well with that. ugh

      Anyhow still deal with the excess sweating and hot flashes (usually happen within a hour of taking a dose but summer is coming so that should prove interesting!), a bit of mania but not nearly as bad as it was when I first started the Savella.
      Pain is still more or less under control. The pain I do experience is worse than I think it was without the medication, but hard to remember such things. Remember it is only a band aid. except for this month, I have had more good days on average than bad. Not good enough that I can fully function at an outside job, but enough to spend time with the kids and get a few extra things done around the house on my own. Less time in bed too.
      Nausea and headache within an hour of taking it but these are fairly quick to go away. If a migraine hits, it hits HARD though (as I found out last night and am still feeling the effects).
      DRINK WATER!! Lots and lots of water. It dries you out and you may not realize you are even thirsty till you are REALLY REALLY thirsty. Plus fiber or something. Trust me on this one!
      It also does decrease your appetite. I am still not eating nearly as often as I should, and prefer a bowl of cereal to a real meal. Be careful of sweets, once you start it is hard to stop! If I keep healthy stuff in the house, I gravitate towards that so i keep snacks in the house to a bare minimum. (kids dont like that LOL!)

      anyhow, it is worth a try. Do your research and that way you can make an educated choice. Oh I will also be getting a full blood panel done at my next appt to make sure liver, kidneys and everything is okay.

      For anyone that wants to give it a shot, I really hope it works for you and everything turns out okay. I have to say I am surprised with the positive results and bummed by the negative.

    • May 30, 2010 at 1:55 pm

      [QUOTE=Drummer]I am on Lyrica and Cymbalta, and was wondering if this, Savella, could possibley help my pain ? Thanks to the ones who answer and I am praying we all have better days ahead .


      Lyrica and Cymbalta are almost exactly the same thing. They act on chemicals in the brain a bit differently but are very closely related. Savella works more on norepinephrine instead of working on the serotonin. Enough so that it makes it different than the other two and even neurontin. I could not handle Cymbalta so the dr did not even try lyrica on me. We narrowed it down to the norepinephrine/serotonin difference between the meds I have tried. Even the anti depressants. Apparently for me, the serotonin ones are not for me.

      My opinion, ask about it, research it, give a trial pack a try. I noticed a difference within a day or so. Yes, that quickly even at a low dose! You can increase to 200 mg a day if needed….just remember what risks are increased okay? Research 🙂 and ask lots of questions. If you choose to change, let us know. I would love to hear that it worked for you!

    • Anonymous
      June 16, 2010 at 11:24 am

      It sounds like savella is working great for you. One of my Drs. gave me the package, I took the first pill at bedtime as ordred, then read the side effects & warnings…worsening depression….thoughts of suiside….attempts of suiside…..insomnia……RLS. I couldn’t sleep, had RLS, & became very depressed, a few other worse things, will call my helthcare provider. Glad it’s working for you.
      God Bless You.