Cathugs and Savella how are you doing?

Discussion in 'Fibromyalgia Main Forum' started by hensue, Jun 29, 2009.

  1. hensue

    hensue New Member

    Are you feeling better and what are the pros and cons. What milligram are you on? Anything that will help is worth a try.

    Take Care
  2. cathugs

    cathugs New Member

    hensue,I am feeling better. I still have pain,but I just "feel" better all over.
    I saw my rheumy last week for a recheck. I was the first patient he put on the Savella.
    I am taking 50mg. twice a day. I still have a little nausea, but not bad enough to have to take anything for it. It just comes and goes. It doesn't last long.
    The other side affect that I have is the excessive sweating. It is like hot flashes from menopause. It comes and goes also. Our 95 degree weather doesn't help any. I needed that last winter when I stayed wrapped in a blanket when I could. LOL.

    I go back in two months for a recheck. He is going to up the dosage if the nausea is better.
    I have lost 9 lbs. since I have been taking it. It curbs the appetite.

    I like that because I need to really lose some weight.

    I think for me Savella is a lot better than Lyrica. But I am not saying that it would be that way for some one else. I have tried a lot of things over the years and Savella is the only thing that I can tell it has helped any.

    I think it has helped the fatigue and brain fog more than the pain
    so far. I am hoping to be able to cut way back on my hydrocodone.
    I am already able to skip some doses, and hope to do more.

    My dr. is talking to my ins. co. now hoping that they will pay on it.
    He said if they didn't he would see if the drug co. would help me with it.
    This is the only med. that my ins. has denied. They didn't say a word about the Lyrica. So we shall see.

    How about the other Savella ladies out there? How are you all doing?

    Hugs from ((cathugs))
  3. MaxieJap

    MaxieJap New Member

    I had all the side effects of Lyrica when I finally reached a therapeutic dose. It was terrible. I was wondering if you had any of the side effects like tremors, loss of balance, loss of fine motor skills, falling, etc. Because of that and the potential side effects of Savella, I'm really scared to try it. What happened to you when you took Lyrica? Did it help, and how long and what dose were you on?
  4. cathugs

    cathugs New Member

    maxie, Lyrica caused a lot of side affects for me also. It caused my feet and legs to swell terribly. I almost had celluitis. Also I gained a lot of
    weight that I am still carrying around.
    I have had trouble with my balance for years, so I don't know if it
    made that any worse. I had a lot of brain fog also.
    I was taking 200mg a day of Lyrica. I never could tell that it helped me in any way.

    The Savella is working entirely different with me. I am now on
    50mg twice a day. I have had a touch of nausea from the beginning,
    but it is not bad enough to take any thing. It just comes and goes
    very fleetingly.

    I have a lot more energy. I still have pain, but I can also tell a difference in the amount of pain. I have severe osteoarthritis all over my body and that accounts for a lot of the pain.
    I have had both knees and my left shoulder totally replaced and my rt. hip is about gone.

    I have also lost 11 lbs since I have been on the Savella ( about 2 mo.)
    I have had no swelling at all. As far as I can tell the minor nausea is my only side affect.

    But, some of the other ladies on here have had major side affects and some others are doing fine. You just have to make up your own mind.

    As for me I am glad I started it. My hubby says he can really tell a difference in me, and that says a lot. I asked him how, and he said,
    " You walk better, you don't drag around looking half dead, you sound better, and you get up in the mornings a lot better" Those were his exact words. There have been some days that I stayed in the bed all day. I deal with a lot of depression and my energy level has been in the pits.
    I also found out that my Vit D is down to 25. I am now on 50,000iu.
    from the dr. taken twice a week and 2,000iu. daily from over the counter.

    I wish you the best if you go on the Savella, and please keep us
    updated on how you are doing if you do start it.

    Hugs from ((((((cathugs))))))

  5. cathugs

    cathugs New Member

    I also have the excessive sweating. I had forgotten that. But it is bearable .I just stay in air conditioning as much as possible. lol.
  6. glenda2

    glenda2 New Member

    i couldn't take made me depressed,irritable, i wanted to cry all the time. i took everything personal and i had the sweating and heart palpitation,but i did have the heart palpitations alot anyway it was just worse on savella.

    i really didn't notice it making me feel any better or not. i had the starter pack and then a month rx.

    hope some others can take it ........glenda
  7. momof3inks

    momof3inks New Member

    I had horrible reaction to lyrica. Is lyrica the same as Salvella? When I asked my doctor about it, he said I wouldn't be a good candidate for Salvella because I didn't respond well to Lyrica.

  8. glenda2

    glenda2 New Member

    no its not the same as lyrica i think its more like cymbalta. but i tried lyrica also and i couldn't take that either. it made my hands and feet swell up and was changing my vision.

    with cymbalta i had that darn sexual side effect.. so tried to come off that and change to wellbutrin. never will i do that again going off cymbalta was bad and wellbutrin made me nuts but it actually made me want sex more to bad it made me

    i am now going back to my good old zoloft, i do have the sexual side effect from it but that is the only side effect i have. i figure 1 side effect is better than 5 or 10 or more. i have bad luck with alot of meds so im going to stick with the old stuff.

    not sure if i want to ever try a new again. my dr. wanted me to stick it out a little longer but i couldn't..i think i might have forgtten to mention i had a headache everyday to while on savella so enough was enough.

    what do you take now if you dont mind my asking?

  9. MaxieJap

    MaxieJap New Member

    Thanks for answering! We sound so much alike. I have been on 50,000iu/wk of D also for years. I am riddled with OA, and have had 3 back surgeries, the last one totally because of the spurs in my cervical spine from OA, and am having so much trouble walking that I am now using a cain. I have chronic depression and am on Cymbalta and Wellbutrin, which does help the depression. It feels like the nerves in my legs are making my knees almost buckle. I also don't get up in the morning very well - have to hold onto furniture to get to the bathroom, I hurt so much. Even the cane doesn't help. My days seems to be shot before I begin, and I run with a crowd who are 10-15 years older than I, yet they have much more energy than I.

    SS lost my app for Med B, and it has still not been approved, though I have A. (Disabled) I am expecting it to come through within the next 2 weeks, and then I will see my RA doc and we'll go over all my meds and see which ones need to be dropped if I start this. I know I need help badly with this pain. Painkillers stop me up, and actually, it was the stress over the lost app from SS that I think pushed me over the hill with my legs. It's been going on over 2 months.

    One more question. Did you balance ever return? Did you lose any fine motor skills and did that return?

    Thanks again.
  10. MaxieJap

    MaxieJap New Member

    My husband had a massive coronary 4 years ago, and something he is taking has taken away his sex drive. We don't dare monkey around with his med. They are keeping him alive! It was the widowmaker, but we were very, very lucky! He lost half his heart, but he's alive and energetic today. And he's still sexy after 41 years.

    I wish something would take my sex drive away. And I'm on Wellbutrin and Cymbalta at the same time. It helps with my depression, does nothing for my FM, and maybe that is what keeps me horny! LOL!

  11. glenda2

    glenda2 New Member

    yea it's probably the wellbutrin.....wish my husband did have a sex drive...haha

  12. heapsreal

    heapsreal New Member

    A tip if you get sexual side effects from ssri's is to use an antihistamine called periactin which is cheap and can help you sleep better. I would look at taking it 1-2hours before horizontal folk dancing. Periactin helps to block serotonin at the site where the sexual side effects of the ssri's come from. Never had any depression etc return because of it either and there are studies on it that say periactin increases slow wave sleep, so a double whammy.
  13. glenda2

    glenda2 New Member

    where do we find this wonderful stuff called Periactin? my husband would love love that to work for me...hehe..the only thing i could do before was to take a drug vacation for a couple of days but then i would have dizzy spells. i don't need help n the dizzy department because i also have menieres disease. they should make a womens viagra.

  14. heapsreal

    heapsreal New Member

    periactin (cyprohyptadine) is an old antihistamine that you can get over the counter(in australia, suppose other countries too), its also commonly used for migraines too. It costs about $6 here for about 30tabs. ask your chemists.
    The above link has some info about periactin, a few lines down talks about ssri induced anorgasmia.

    good luck, have fun!!
  15. glenda2

    glenda2 New Member

    thank you , i will have to check into this...

  16. cathugs

    cathugs New Member

    My balance is really bad. I am forever falling. I have fallen twice in the past 3 months, flat on my hands and knees. It jarred my upper body
    pretty bad. I was really worried about my new knees, but they were okay.
    They must be in pretty good.

    I have always had a prob. with balance. My mama used to tell me when I was little that I couldn't stand up in a ten acre field.
    I have a younger sister the same way .She also suffers with fibro and all the trappings that go with it. She also has epilepsy, so she has to be careful what she takes.

    She is recovering now from rotator cuff surgery. She sees the same Rheumy that I do and he is going to start her on Savella after she recovers. She couldn't take the Lyrica either.

    I am not on any ADs. None of them ever helped me. I hhave just learned to deal with it.

    As for the "horizontal polka" that is a thing of the past at my house.
    Just a far away memory. LOL. I am 62 and my hubby is almost 74.
    He is a diabetic, high chol., HBP, bad heart, is on a ton of meds.

    Frankly I am glad that I don't have to worry about the "polka''
    any more. We have been more like room mates than a married couple for many years. He has done a lot in the past that I cannot get over
    and I sometimes wish that he was " no more" I know that may seem harsh to a lot of you, but I suffered for years and had to listen to his mouth. He just could not ,or would not understand how any body
    could have pain all the time.

    I had to listen to him biotch about all my meds and all my doctors
    for years.
    Well now he is on twice as much medicine as I am. HE has a torn disk in his lower back, is just recovering from a frozen shoulder. So now he
    knows what it feels like to be in pain all the time.

    I used to tell him I wanted to see the day that he suffered like I do.
    Well, sometimes "revenge" is sweet. And now I think he is starting
    to get alzheimers.

    Well, I am through ranting now. Sorry if I have offended any one.
    I am glad for those of you that can participate in the "horizontal polka"
    and enjoy it. LOL.
    All of you have a blessed night.