Savella Trial for fibro

Discussion in 'Fibromyalgia Main Forum' started by lvjesus, Apr 21, 2011.

  1. lvjesus

    lvjesus Member

    FINALLY, after FIVE WEEKS, got some action out of my doctor. I went asking for Adderall and he is giving me samples of Strattera and Savella to try. Of course I have been googling both and got some good and some bad.

    I guess I am picking up my samples tomorrow unless I am as sick tomorrow as I was today, cause if I am, I am calling in sick, unlike today which was torture with the fatigue so bad I wanted to cry. I am worried about the sweats that people talked about as a side effect from the Savella though, but it seems that a lowered dosage might help with that.

    [This Message was Edited on 04/25/2011]
  2. lvjesus

    lvjesus Member

    I did some research on both of these before I picked up my samples and had decided on trying Savella first, which were the doctor's instructions as well. I have a 2 week sample pack. It starts with the 12.5mg dose twice a day for 2 and a half days, then to 25 mg twice a day for 4 days and then up to the 50mg dose twice a day.

    Worst side effects mentioned by users is nausea and sweating, neither of which I have had and hope to not get when I increase the dose tomorrow. I can tell it does something because this morning I felt very good when I got to church, but by 10:30 I was getting very tired and by the time we got out at 12:30 I actually felt like I might pass out.

    I had my 2nd dose of the day at 2 PM and have been watching a movie since so I feel pretty good right now. I was disappointed to crash so soon, but am hopeful if a small dose does something that a higher dose will do more.

    Haven't had much input. Thanks to those who did. I will post more later in my trial.

    And Jam, I understand your point and appreciate your input, but have to say that right now I am working still full time as a bookkeeper and am finding it hard to do what I have to do when all I can think about is getting off and trying to keep myself off the floor.
  3. lvjesus

    lvjesus Member

    Today is day four on Savella. Dosage increased today to 25mg twice a day. First dose, 7am. Felt AWESOME and NO PAIN AT ALL until around noon. That was 5 hours, and after 5 more hours I would be home, so I took the 2nd dose at 12.

    It's after 5. I still feel GOOD. I got off at 2:30, went to the bank, went to the grocery store and came home. I have had NO pain meds today except 3 advil for menstrual cramps. Amazing.

    No nausea, not too warm yet. No horrible side effects. I pray it keeps working like it is now and that it does not cost an arm and a leg for the script.
  4. rosemarie

    rosemarie Member

    I have never heard of Savella what is it supoosed to do for you/ and how iis it to wrok for fibro? I am one of the people who have strange reactions/side effects to new meds. So I am nervous about trying any thing new, and some old meds i have tried before.
    i have had side effects that have ranged from manic anger, severe blood loss after surgery, I had my tonsils removed at the age of 21 and about a week after i got really sick , high fever, aches in all myjoints and later on after I had been admittened to the hospital it was found that i had blood in my stool and needed 2 units of blood.
    My doctor wants to try some newer meds on my fibro like lyricia and my insurnace wil not pay for it and I can't pay for on my own. So I am left again with my doctor wondering if I am being negitive about new meds and making up reactions to them, or did they really happen and what were the symnptoms. Before I se him again i am going to find all my own medical records to show him what the side effects were to all the different meds.

    TAke care of your self and i hope that this will help you .
  5. rkidd3423

    rkidd3423 New Member

    I have been on Savella since December. I have terrible night sweats and I have lost about 30 pounds due to the nausea. It really didn't do much for me regarding the pain. I really hope it works for you. I am finding that not all of us are the same so what works for one doesn't always work for another. I'm still trying to find what will work for me. I have been on Neurontin, Lyrica, Cymbalta and Savella...none of those work for me. I wish you luck because I work full time as well and I've had to miss a lot of work due to the fatigue and pain. I will pray for you!
  6. lvjesus

    lvjesus Member

    Day 5 started out good - no pain, feeling pretty good. By 10:30 I was starting to feel a bit tired. By 2 pm I was getting pretty tired. It is 4:12 and my awesomeness from yesterday has not made it into today, but there's always tomorrow...

    :( Fibro Sucks! That should be our motto!
  7. rosemarie

    rosemarie Member

    Fibro sucks, I agree I am so sick of this never ending flare. Can't take it much more.
    What is this medication, I have not heard of it. I too have been on many different meds that are to ease fibro pain but I seem to get all the strange side effects, the unusal ones that no one has heard of. So I am really nervous about trying any new medicaion. I already feel lousy and in lots of pain, I don't need any more pain or feeling rotten.
  8. lvjesus

    lvjesus Member

    Day 6, took a 25mg @ 7am, felt good, got a bit sleepy around 10:30 but I had a coke and it went away. Took my 2nd dose at 12, finished work at 2:30, went to the library to pick up a book, went to Family Dollar to look for the mascara I like that no one carries now. They did not have it either :(

    Came home, cleaned the kitchen and livingroom and started laundry. Still feel good, STILL have not had ANY pain meds today, not even Advil. Nothing hurts. I don't know that I have had a day in the last 7 years since I got dx'd that I have not had any pain. If I have it hasn't been many, that is for sure. Can't believe it, worried it might not last, but am still not at the highest dose yet, that starts Friday.

    I do not have any side effects at all, no nausea, no sweats. Great!

    Rosemarie, Savella is specifically for fibromyalgia. It works like some anti depressants, but it is not an anti-depressant and is not suggest for that use.

    Here is some info I copied and pasted. If you google it you will find lots of info. A LOT of people who reviewed it complained of the nausea and sweating to the point of having to change clothes. I am up to 25 mg twice a day and have had none, thank God.

    Milnacipran is used to treat fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep). Milnacipran is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs). It works by increasing the amount of serotonin and norepinephrine, natural substances that help stop the movement of pain signals in the brain.

    I know nothing works for everyone for sure cause I have been there too, but I am praying that this will continue to work for me. It is doing so good right now that if it stops working I guess I will be devastated. I will keep everyone posted. Love you guys!
  9. rosemarie

    rosemarie Member

    I noticed that night sweats were on the side effects, I have night sweats, day time sweats, working out sweating, and nausea I have a plenty,i am one of w few who reacts to different meds. New ones to me, have caused me to sweat, have servere nausea, manic anger, forgetfullness, feeling like death warmed over, being beat up by a mack truck and a steam roller at the same time. Some of the strange side effects I have had are hard to discribe and are not on the "Usual list of offenders" I have had this reaction to meds new to me all my life. And it has not changed at all. II matters not what medication I take I still get the strange , weird , unusal, off the wall reactions, that no one else has ever had. It scares me so much, i don't want to evern try some thing that may help because of all the side efffects i always get when III start a new medication. yes I am strange , unusal, and weird, but it changes nothiing i am still terrifiiied of taking new meds .

    I don't want to try any thing due to all the different side effects I have had over the years, this is sacrey to me. I am a woss about taking new meds,
    Signed scared to try new meds. Rosemarie
  10. lvjesus

    lvjesus Member

    1st of all, sorry, Rosemarie, that you have such a hard time with new meds. That sucks!

    Today started out a bit rough and I was afraid I was in for a bad one. At 3:30 am I woke up and could not go back to sleep in my bed, so I moved to the futon in the spare bedroom. This did not use to bother me, believe it or not, but the last time I slept on it I had a bad day the next day. I was tired this morning so I was not that hopeful, but I took my FRS and my Savella at 7 am. I felt a little better when I got to work, but not a lot and I figured it would go downhill as the day went on. All of you know exactly what I am talking about I am sure.

    At 12 I ate and took my 2nd dose and by that time I was feeling better anyway. I am home now. It is after 5 and I feel fine. I also have not had any pain pills today (I had my doc up me to 7.5mg of hydrocodone recently) except 3 advil around 1pm. Amazing!

    Tomorrow is day one of the 50mg dose. Pray it goes over well. And that my insurance will cover it!
  11. lvjesus

    lvjesus Member

    Today is day 8, 2nd day on the highest dose. It is still going well. Today, Saturday, feels like the old days BF (before fibro). I got up, took my shower and did some laundry. Then I decided to tackle the caulked strip behind the sink. I removed it and cleaned up the old caulk. Then my daughter and I went to town. Prom is tonight and she wanted to get her hair cut and nails done. We left at 10, went to the book store, then to the hair cut shop, then to the nail salon and then to lunch. We got home around 2 and I finished folding the last load of laundry and then started on her make up. It is 4pm and I am sitting down for the first time since the drive home from town. Thats 2 hours.

    I have had no pain meds today at all. My hips and back are hurting a tiny bit, but not bad at all. Still don't need pain meds. I am very pleased overall and it is a huge improvement. I intend to let my doc know on Monday that I want to continue. If you google Savella you will find lots of info. One thing I would say that you should do is try it for yourself and do not let the negative reviews you see stop you. If you try it and it doesn't work or the side effects are too much, then so be it, but you won't know if you don't try. I had none of the side effects at all. Others say that they went away after awhile. Some say it takes a few weeks to work, but I am sensitive to meds, as I know many others are, and the good side of that is that a small amount works well for me.

    I had some improvement on the lowest dose the 3rd day I took it. It did not last but 2 or 3 hours but the higher doses worked better. Two other things that I did on the advise of others is to take with food and take the second dose in the afternoon. I take the first at 7am and the second at noon. I am very happy that I found this and just hope that it keeps working and I can afford it.
  12. lvjesus

    lvjesus Member

    I am up and running on the 50mg dose and the results are still good. I called my doctor's office this morning to get them to call in the script, which they did. Now the final worry to get over is resolved, the cost. It was $30, which I can live with. I still feel amazing and can hardly believe it. Of course I worry a tiny bit that it will stop working, but I will cross that bridge when I get to it. My pain and fatigue are all but gone and it is almost like a cure, even though I know it is not. Hopefully it can help others by my testimony. God bless all.
  13. debilyn

    debilyn New Member

    hi lvjesus,

    I'm so happy to hear that you are doing well on Savella. I have tried it two separate times--with several months in between--and just couldn't manage the side effects. My blood pressure which is normally 110/70 went up to a consistent 160/100; I had horrible sweating and flushing spells.

    The first time I tried Savella, I did like you, I used the titration pack. I had two good weeks of reduced pain and increased energy. After that the side effects started, and I was never able to get rid of them or to get back to the pain-free state of the first two weeks taking Savella. The second time I tried the medicine, I spent twice as long with each dose--4 days at 12.5 mg rather than 2, etc--my doctor thought maybe if I started more slowly I could get the benefits without the side effects, but that did not happen.

    Needless to say, I was disappointed. I agree that medications are toxic as someone mentioned above, but some of us just don't have a choice of not taking them. It becomes the difference between being bed-ridden and being able to marginally function each day. I don't think any of us takes medications because we want to or take medications instead of using a supplement. The supplements don't work for some, and we're forced to take the medications to have some semblance of a life. But I digress; medication vs supplements is not the topic of this post.

    lvjesus, I envy your positive results with Savella and I pray that the benefits continue for you. Your good experience with the medicine supports the claim that we all react differently to medications.



  14. lvjesus

    lvjesus Member

    Sorry to hear that it did not work for you :( As for meds versus suppliments, well everyone has to do what they think best for them. Through this time of being able to be off pain meds for the most part, I have learned something about my relationship with them and with the fibro in general. I used to wonder if I was taking pain meds when I might not need to. This is hard to explain, but let me try.

    I don't mean taking when I don't need as in addicted or getting high, cause I am not and I don't. I mean I have wondered if I was taking a pain pill for pain that wasn't that bad, as in maybe I am imagining the severity of the pain. I have been on the other side of the coin also where I will wait too long and then I am miserable while I wait the hour it takes for the meds to work.

    I have discovered with the Savella I don't even think about pain meds cause I don't have any pain except occasionally and then I will think about them. I have discovered I am not lazy either. When I am not in pain and about to pass out from fatigue I do housework instead of sit on the sofa. Not that I really thought I was lazy, but you know what I mean. I wonder sometimes if I don't do thing because I don't want to. Now I know better.

    Today I noticed rash on my neck and it occured to me it might be the Savella and I have been noticing a little dip in my energy in the morning and afternoon and being a little jittery in the morning so today I tried cutting my 50mg pill in half. It worked well. I took my first dose at 7am and the second @ 11am and then another around 2pm. That will save me on the cost as well if I can get by with one pill a day instead of 2.
  15. gapsych

    gapsych New Member

    Thanks so much for relating your experience with Savella. There is a possibility I may try it in the future. I can't imagine going without pain.

    Someone reported doing better on the lower dosage or maybe it was the first two weeks. I am wondering if it is possible to remain on the lower dose and still get the pain relief?

    Here's a bump and let us know about your progress.

  16. lvjesus

    lvjesus Member

    I am back to taking the 50 mg dose twice a day. I have had no pain meds today or yesterday. My legs have been hurting when I walk. That is new. Yesterday I was cleaning the kitchen though and the old feeling of fatigue came over me and I had to quit. But we went to a wedding last evening and I felt ok and have done okay today. It is disappointing to have to stop for fatigue when I was hoping it was gone. I say I am greedy. I want it all to go away! I am still very pleased overall though.

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