Anyone Else Trying Savella For Fibromyalgia? (Page 15)

This is a new medication that just came out for fibromyalgia. I have several other conditions involving spinal degeneration , herniated discs, arthritus, etc.
I've been taking this medication for a little over 2 weeks now and have worked up to the full dose. My biggest symptom seems to be upset stomach but I don't know if it's from the Savella or from de-toxing from 7 other medications that I've been on for over 10+ yrs.
Is there anyone else out there that has started this medication that can give me any information that they may have on it?

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THANKS Faith and Fibrogirl, and YES the decreased dosage of the 50 mg 1 qd is working good on fatigue etc, better than anything else, however I know there are days the stresses of life in general, bills, etc make mood swings worse BUT the AGITATION, like bite everyones head off in a second, no thought, no anything and then I was so witchy my family could't stand me and I couldn't really stand myself...it was seriously that bad at the 50 mg bid.
As to the INFLAMMATION thing, I've been told by my rheumatologist, like 10 years ago (I have been diagnosed with lupus and rheumatoid arthritis) that fibro goes hand in hand with these diseases...for what thats worth. This was a doc who believed in the fibro before it was believed in so to speak. Faith, I'd donate to your testing causes just for the info, seriously, please keep us posted, do you know any of the viruses off top of your head...I too worked for a doc as nurse / medical assistant for ten years, just wondering. Thanks all and hang in there ALL.

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I will be playing around with the dosage to find whats right for me. right now I am taking 50 mg once a day until I get the IXEL( france's brand name for Savella) then I will up to 50 mg twice a day. I will work it from there. It seems the only missing link here is dopamine! I am taking 5 htp and will be taking SAM-E when I can afford to buy it. I was considering L Dopa as well. Any input appreciated.

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Hi all...Fibrogirl, if you have a regular MD, please be sure they know what you are doing with your meds and any supplememts you take. Not so you can have their approval, but so they know what you are on if they decide to add something to your med regimine. If I was doing it on my own, I would stick with increase or decreases that are divisable by 12.5 since this is how the starter pack is broke down. You may find that 25mg 2 times a day works instead of 1 50 mg a day. On the Sam-e, just be aware that it affects serotonin levels (as well as dopamine), and savella already affects the serotonin receptors. Good luck and hope you find what works for you :) Tessie, you are right about the daily irritations of just life :) That is probably why I laugh at alot of them...beats being mad anyway :) As to the viruses, the most common ones the MD in FL found in fibro pts is Cytomegalovirus (CMV), Herpes:8 types are tested for, Parovirus B 19, Rotovirus, Enteric Coronavirus, Enterovirus, Varicella-Zoster virus (VZV), adenovirus, and Coxsacki A & B virus. The others that the Fl doc tests for are Astrovirus, Calcivirus, Torovirus (toro=bull....hehe), Picovirus, Pogosta Virus, and Sindbis Virus. I am taking a copy of my info on the possible virus link to my doctors office tomorrow, but i am not seeing him. He just asked me to bring it when I had time so he can research it. He is so fantastic! Wish all of you could see him :) I will see him in May or June. I know that they can test for some of them in their own lab, and he will cut me a break on price, but not sure how many they can do there. Thanks for your offer, but I will get it done. It is not something I am going to put off to long, but after 12 years, iI have the patience to wait a month or two. Actually the anti-virals will be more expensive than the testing I think, if he decides to put me on them. have a great day all of you, and hang tough :)

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WOW Faith! I'm so amazed at how great your doctor is. My GP also seems to think that in a weird way, all my DX's are somehow related virally. And it may stem back to when I was pregnant with my last child (22 years ago), if not longer. At 5 months pregnant I developed a viral infection that stayed with me the remainder of my pregnancy. They could never define the strain. A year later I became pregnant again but ended up having a miscarriage. While in the hospital they determined I had another viral infection, cause and strain UNKNOWN! Over the years I have been susceptible to alot of viruses. I developed Parvovirus (which I don't wish on anyone) that took me over 6 months to overcome. My rheum said some people - ME - have lifelong complications from it. I've also tested positive for a recent strain of Mono, EBV and a few others I don't remember. So, I think it's very possible that the link between FM and viral infections is quite possible.

I've been under a tremendous amount of stress lately so I've been flaring like crazy. But I think my CFS is fighting with the FM right now. Each one wants to be boss of my body. Grrrrr! I can't sleep, I hurt and I'm exhausted. Not a great combination.

Please keep us posted Faith on your progress with your doctor.



-Believe that life is worth living, and your belief will help create that fact.
- William James

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I have taken savella 3weeks first pill in pack is12& half mg. worked right away no more pain dr put me on 50mg but i am cutting back as i dont need a high dose only thing is i have week legs has any one had that trouble? thank you

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I saw the pain doctor yesterday. Very nice, well informed and methodical. She really addressed everything the other docs dismissed. How refreshing! Because of my heart failure she has to be very cautious of the meds she prescribes. Bad news for me since most of the Fibro drugs don't mix well. But she is optimistic we can find effective treatment even if not in the conventional way. She gave me 3 new meds to try. Voltaren Gel, Nuvigil and Skelaxin. She's not expecting much from these but she's hoping it will point her in the right direction. We shall see. She's also scheduled an MRI to see if I have a rotator cuff tear.

So, how are you gals doing? I was in alot of pain after my visit with the doc but I woke this morning feeling better. Fibro fog has been my biggest problem lately. I just can't seem to shake it. Oh Well!

Everyone have a great day! And remember If it is to be, it is up to me.

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So i'm on both Lyrica and Savella (max dosage for both) Since Savella pain is quite a bit better. What do any of you think will happen if i try to go off the Lyrica. Last time i tried to wean off the pain was terrible.

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got my IXEL ( French Savella) today. I am going to try 50 mg once a day then up it to 50 twice a day. It is in capsule form so cannot split it. I am also going to add a product called BalanceD to increase my Dopamine. It is herbal and availalbe without a prescription.

I am still tire dand take naps but am not in as much pain. Savella seems to be working!!

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Hi, long time no write. Been a busy girl. Happy to report I have decreased my savella and wellbutrin SR to 1/2 the amount. Tomorrow I go back to the pain specialist (I cancelled the last appointment because I have no need) to get off the stuff. I have better luck with accupuncture and chinese herbals. Sure, my insurance doesn't pay for it, but my health is worth it. Went riding horse (in the rain - I got great raingear) and I have been sleeping incredibly well! I've been excercising - not for a LONG time period, but I am doing close to ten minutes of cardio work out. I'm happy right there. I do use the lydoderm patches for the achey spots. My flare ups are very minimal, and instead of lasting days, it is more like hours. I'm continually amazed. So are all the people I am around as they can hardly believe that I am the same person. Good luck to you all, I hope you can find the desire to give something else a try. Of course, you have to want it.

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lori , pharmaceuticals were a last resort for me. it is had to find good practioners of alternative medicine who know what they are doing. you are lucky to find one. I am in FL in Brevard County and do not know where to ifnd one. Referral appreciated if you have on

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Hi all. I am very curious about the Chinese herbals. I have often thought of looking into it but Wyoming is not the place for that. But I have long theorized that the Chinese system of herbs and healing would work well with the peculiarities of fibro. Could you give a little more detail on how this condition is treated within that system (i.e. - special herbal blends, how often taken, what form, other companion treatments, etc.) I have done all the pharmaceuticals I care to try after nearly 20 years with little success. Although, I am taking the somewhat new Amrix, which is a time released flexeril that does not make me drowsy and works nicely for stiff muscles and migraines and I do take tramadol as needed for pain, as it has been the only drug that gives me relief, but I use it sparingly. Thanks for your time and best wishes to all in their daily battles with this condition!

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I have been on Cymbalta now for 3 years. I can only tolerate 30 mg. It is somewhat helpful, but taking Gabapentin at night along with it has helped too. I've gained 15 pounds through the past 3 years however. I'm on other meds too though for anxiety and muscle relaxant for night. I have herniated discs in my neck and lower back. I want to try Savella. I was recently rearended and I'm in terrible pain now and can't get relieve. Lyrica was horrible. Only made it a week on it. I had swelling of hands and feet and weight gain. I don't know which drug is causing it, but I crave sweets. I've always stayed away from sugar and now I seem to be addicted. Does anyone know what type of doctor is willing to give trigger point injections? I need relieve and I'm willing to try almost anything at this point. Fibromyalgia and Chronic Fatigue has taken my life away from me and I want it back. I know that all of you suffering with it feel the same. If I find anything that helps, I will be sure to let you know. I have a friend that started Savella 6 weeks ago and says she's feeling so much better and hasn't really noticed any side effects. That would be so great, but in my history I seem to have side effects of some sort or another from anything I take and I usually have to stay on lower doses than most people. I'm a light weight when it comes to meds. I've tried to withdraw from Cymbalta, but can't make it more than two days without becoming suicidal and going into a migraine. Wish I had never started it. It does help the hypersensitivity that I have though.

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Hi Everyone! Wow! What a bunch of 'stuff' everyone has been dealing with! FibroGirl - I will ask mine here in Traverse City, Michigan if there is an association that she belongs to, or if she knows anyone in that area. As far as chinese herbals, I am taking Gui Pi - company name is Blue Poppy Classics - it is hard for me to explain why she gave it to me, based on my needs - but if you look it up on the internet, you can easily find traditional information. The other I am on is called Land and Sea Nutrition. This is Blue Green Algae also can be found as Spirulina. Alot of people I know use this for additional nutritional support, (I use it with a light meal, or if I'm in a hurry, I use it kind of AS a meal). Tammy, having been in an auto accident, it is possible that you could get accupuncture treatment if your regular physician wrote an order for it, and the regular insurance gets billed and denies it, then the auto insurance pays it, at least here in Michigan. It is the best thing I have found for pain relief. The savella did help me - and I am glad that I had used it. But I am also glad to be going off it. The doctor today started taking me off the wellbutrin ASAP, then I will take the one 100mg per day until gone, then dose down to 50mg/day for one month. I'm still doing well. Also, the doctor today, she seemed to be more conscientious of my needs and prescribed me a device for the olner (sp?) nerve because I still have problems with my arm -elbow down to my pinky and ring finger. The technician that fitted me for the brace told me that my body CAN heal itself. I did not need to go to the accupuncturist this week, doing well. It's not like you have to go all the time, it is only an as needed. I like to go though, because it is so relaxing and rejuvenating. Last night I rode a new horse = quarter horse. Not the comfortable ride of a Missouri Foxtrotter, but I did it and I'm not in any pain other than sore lower leg muscles because of a different saddle. Tammy - a pain clinic -doctor who specializes in pain is who gave me trigger point injections when I got them. She used lidocaine, and I did have lidoderm patches - 12 hours on/12 hours off. They are very PRICEY. I didn't have a problem with blue cross blue shield - 90 patches per month were $700, I had a $50 copay but a card from the company makes it a $30 copay. Those were great for putting right on the painful muscle. The xanax that I take (still, and plan on keeping it for now) is excellent for anxiety. And, I don't know about anyone else, but when my pain was at an increased level, I got extremely agitated and that really helped me. When my pain got out of control, it did not matter what I did, NOTHING helped. The savella and the wellbutrin combined caused me to have insomnia. Not good either, if you are not rested, your body will not be happy.
This might be too long of a post, but I hope it all shows up. I hope to be able to help people. When money is an issue (is and has been for me), that stress also causes body to be in pain. Stress = fibromyalgia flares. We all have most of these things in common, hopefully everyone sharing information will help others.
I miss hearing from Tessie and Theresa. Where are you ladies?? if anyone wants to email me so we can get a further conversation or phone call I am lbloink [at] gmail [dot] com. To the medschat folks, please allow my email address to be shown. I'd appreciate it. Thanks.

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Hello everyone. I haven't posted in a very long time but I do read all the posts and am very thankful I see that one has arrived in my mailbox. This site has helped me so much and I find a great deal of comfort when I read them because I know that I'm not alone in this daily struggle. My pain levels have been on the extreme high side for the last 2 months and am looking for any kind of relief. This in turn makes me very depressed and then I tend to withdraw instead of reaching out for help. I've always been a physically and emotionally well adjusted person but lately I've been feeling so weak and sad. It is awful to have the physical pain but when you add in the emotional pain it seems to be 100 X's worse. I struggle through each day and often wonder what is it all for? There has got to be a reason that the Lord is challenging me in way. Then I feel so guilty because I know so many people are much worse off than me.
I'm still taking high doses of morphine along with many more meds for various conditions other than Fibro/CFS. Lately I've been taking the higher than recommended dose and I strongly suggest that you do not do this! Last week I doubled my morphine intake and MORE does not make it better!!! I ended up throwing up for 2 days and my stomach is still not back to normal. I just get so frustrated at not being able to enjoy what the LORD has given me.
Thanks for letting me vent---I could go on and on but it really doesn't help and I try not to complain to my children and friends. Who wants to be around someone who is so down? Tomorrow will be a better day! It is so beautiful here in the Southwest desert and summer is just around the corner. I love the heat! May GOD bless you all!!
Teresa

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taking 50 mg twice a day now. helps the pain immensely but not the fatigue. I am ever so tired all the time. Side effect are minimla still. I am trying some alternative things such as oil pulling and continuing my vitamin regime as well as trying to more into organic foods and wheat grass etc. Not very active since the fatigue level is so high but the pain is under control thank GOD

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Dear Not Doing So Well, Every single word you said is exactly how I feel. I don't dare complain or show depression because I'm not validated by loved ones or medical professionals. I'm just told I have so much to be grateful for and so many have it worse than me. Yet, like you, I'm in so much pain, I can't enjoy any of it, not even the time with my special little grandchildren. The pain for me is so severe that I just want to be done with life and with no support emotionally it's even worse. I'm afraid to take pain meds. I have lortab to take when I absolutely can't handle it and I only take a half one. Being a person that never took so much as an aspirin in my life to now having to take mulitple meds for multiple conditions, my kids call me a druggy and say I like taking drugs now and think I take them for that reason. That hurts me to the core, as there's nothing I hate more than having to take meds and nothing I take is to get high or numb anything. I usually take half of what the doctors tell me, because I don't like putting all that toxic stuff into my body. I'm grateful to have found this website. At least I see that I'm not as crazy as everyone thinks I am, and others are feeling and going through the exact same thing I am. Not that I want anyone to be going through this, but it helps, because I'm constantly told that I just need a shrink. I too pray for health and to have my life back again and constantly ask the Lord why and what the purpose is that he has cursed me with this and what he wants me to learn or do with it to help others. I don't even have the strength, health or finances to help others like I used to, so why has he taken that from me. I too just sit in my house day in and day out and withdraw from everyone because I'm so falsely judged and misunderstood. Everyone that knew what I once was cannot accept what I am now. Even I can't, but I have no control over it and I've always been an in control take charge kind of person. I've never felt more helpless in all my life, than I feel now. I have hoped for help for so long now that I'm to the point of giving up on hope. I just wish and pray each night to go to sleep and not wake up, if I can't improve. I'm getting worse and worse and I try my best to stay positive and put on a front to be strong around everyone, but that's not at all what I feel inside. I hope we can all get some answers and help someday soon. I'm afraid as slow as the research and studies and medical, insurance and government is to coming around to help us, that it will be far too late for me. The only thing I can see to do to possibly help those in the future, is to allow any researchers who will to use me in their investigational trials and studies. I don't even care at this point if that means experimental drugs. I pray for you and all like us and God bless you. I hope that just knowing that I completely understand every word you've written will help give you some type of support and strength to keep going on.

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Hi TamJeano, Wow!! I am sorry to hear your words. God didn't place a curse on you and he only gives you what you can handle. Your faith is what keeps you strong. Imagine life without knowing him. The curse, unfortunately has been years in the making. Not going to blame 'big corporations', but when the almighty dollar is all that is important and we get crap imported from China that MAKES PEOPLE AND ANIMALS SICK, because IT IS CHEAPER FOR SOME COMPANY TO BUY TOXIC CRAP AND POISON US - and years of this CRAP building up in our bodies. Yes, we are all going to be sick. But the emotional side of fibromyalgia - the stress induces the problem to worsen. As far as your family goes. Shame on your children! You probably didn't raise them that way and you need to tell them. Right now you (and everyone else) needs to make YOURSELF your number one priority! Everyone else can do their own laundry. When I was having a bad day, they ate whatever they could do for themself. My 18 year old cooks alot, and he will be a better person for it! He will thank me later! ***smile***. When my husband would complain I HAD TO stand up for myself! I went to therapy for pain management techniques and found out I already had the tools in my toolbox to deal with the stress, I just had to be assertive and use them. So it goes for all of us. There are things that you can do to cope. As far as experimental drugs, my doctor advised me against it. That's not an avenue she would recommend EVER. Please make sure that you have your vitamin D levels, B-12, iron, all checked. Please make sure that your physician is very appropriately educated, and if it is your family doctor, then ask to see a specialist. Specialists usually require referalls, and if you don't ask your family doctor for it, you aint gonna get it! You have to educate yourself a bit so you know what you have to ask for. The endocronologist was who did the vitamin D for me, and found I was extremely deficient. Please keep your chin up. Try aqua therapy if you can, a good physician will prescribe physical therapy for fibromyalgia so that you can get the aqua therapy. Then after you learn some basic stuff, they will discharge you, but most places have a program that you can pay xxx each visit to use the pool afterwards. Believe me, when I was flaring up with fibro, I would just float in the water and that takes all the pressure off your muscles so they can relax. It is awesome and these things do help. Please keep your chin up. If you need any further encouragement, ask your friends to put you in the prayer list. You take care of yourself! All of you!

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Tamjeano5: I am so sorry you are feeling so terrible both physically and mentally. Seeing a GOOD therapist may help you with the feeling of hopelessness. I think all of us has felt that way at sometime. I have found that moving more, even though it hurts sometimes, I feel better. Diet, less sugar, sodas etc. and more fresh foods seem to help. I have been living with fibro +++ for over 20 years and it can get VERY bad, but then it seems to recede. The more happy thoughts and fun things I do makes the pain seem less intense. Notice I didn't say it goes away, but it is easier to deal with. I have also been told I was a druggie which I think is funny as I do not drink and am a control freak so I do not like anything that makes me feel out of control. People try to make things fit into their reality when they do not understand, therefore you do not look like you should be in pain(no cast, crutches etc) so you must be taking the drugs to get high. I hope knowing there are others out there who understand what you are feeling helps. I would really think about therapy as talking to a non-judgemental person really helps. Hoping tomorrow is a better day:)

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Hi all, I first have to agree 100% with Karen; I can't tell you the number of times people have said, Well, you LOOK fine! If you don't look bruised from head to toe and you happen to be at the store (because your out of food) You MUST BE FINE! If we had casts, crutches, etc., it would be different, PLUS it goes on and on and on. Most people get sick, then they get better. I hear all the time, oh, so and so has had a bad year but I hear they are doing better......well SOME of us have had a bad 20 years...you have to do like Lori and get it in your head when your at your worst and feel like you're going to die, or just wish you would, which I have thought many times, although NOT LITERALLY MEANT IT, it is so dang hard to be positive. You need other people who understand what fibro feels like to what I call, VENT, to then go back to your life and do the dagnabit best you can!! I learned after about five years to quit telling MOST people how I REALLY felt and just say I'm FINE!! The people who really know me, and care, know when I'm not fine....even though sometimes family can be hardest I agree 100% with Lori as I have lived it, THAT Kids can get their own cereal, they won't die, they can find something else to wear or better yet start washer for you and then WILL make it and thank you for it later for making them HAVE to be independent. I have a sister who is two years yonger than I am, she has always had excellent health. I talked to her the first of the week as she is having trouble with two of her boys, she said, and I QUOTE: I HAVE DONE TOO MUCH FOR THEM! I honestly did think to myself, thank you for that fibro!! I didn't get up and get my kids up to school everyday, I COULDN'T always, BUT THEY DID. There are A MILLION negatives about this disease but there are some positives and I was really glad I truly felt the way I did when I HONESTLY and TRULY thought well thank you for that fibro. Just wanted to share this little thought with all of you.
I'm still taking the Savella but only 25 in a.m. and 25 in p.m. that seems to be max dose I can handle, still having bad days and a few good ones but not as much pain and fatigue. I think I've been on it now since about Feb. Good Luck all. You are all good, wonderful, loving, caring people with a terrible, horrible disease that makes you feel awful, sometimes both inside and out but we have to STAY IN THE FIGHT ALL!! Hugs and prayers!! Have a good moment all, thats your assignment for this week!!

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I have been on Savella, and I am noticing a remarkable difference...I feel much more happier...I pace myself when exercising...listen to your body & mind...that is a true key holder to Fibro...know when you need downtime...get on a schedule for sleep...I took all kinds of medicines...and this is the one that is working for me...as long as I work with it...I took Lyrica...had weight gain...Cymbalta...I felt not myself mentally..and combinations of many drugs...the less drugs and the right one ,is best & don't forget to work with everyone involved. Your Dr., family, and work...it all goes together...I feel GREAT!

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