I’ve not taken the prescription drug Savella to manage Fibromyalgia pain or other symptoms, but I see and hear about warnings from people who have taken Savella and these warnings seem like something to be taken seriously. If you’re considering adding Savella to your prescription drugs regimen, read on and take time to become knowledgeable. This information could be helpful in making up your mind or at least knowing which questions to ask when you visit your doctor.
Below are listed a few Savella problems. Some peoples’ reactions are good, but some are terribly bad, so you owe it to yourself to check these out.
If you put the term “Savella” into the search engine on the Health Matters Show website, you’ll be able to read all of the posts where the drug Savella is highlighted.
1) Jan Majoney’s Facebook website
(Of course you’ll need a Facebook page to be able to login to read this, but it’s good information. If you, personally, don’t have a Facebook account, consider getting one today. Facebook has a strong contingent of active members who suffer with Fibromyalgia and/or Chronic Fatigue Syndrome. Once you’re a member, please link with me on my personal Facebook page.)
2) A conversation on Daily Strength offers you insight into a great conversation and a warning about Savella problems.
3) Another conversation at Health Message Boards (It appears that you must be registered with this site too to view the page.)
4) And last from the Healing Well community, it includes a discussion about prescription drug side effects.
Thanks, Cinda Crawford
Host of the Health Matters Show
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Emma 01.14.10 at 8:59 pm
My doctors told me Savella was not an “antidepressant” but I’m no stranger to SNRIs and SSRIs,so I called them out on that. I am extremely chemically sensitive and usually take half of the lowest recommended dosage for pretty much any medication (with two exceptions.) My doctor gave me the starter pack and he told me to cut the first doses in half. I took two of those half doses – one at night and one that morning. I experienced extreme hostility and it felt like my head was disconnected from my body. I couldn’t stop crying. My heart was racing which is no fun for me because I also have mitral valve prolapse. It felt like inanimate objects were talking to me. My boyfriend had to cancel his plans and stay with me the entire day because I was acting so strange. I have had no luck with other “fibro” drugs like Cymbalta which caused me to stay awake for days and not eat. I’m scared to try Lyrica and other drugs because of the side effects.
I’ve been on a long list of SSRIs, SNRIs and treatments that are supposed to help fibro (and also my depression and anxiety). Nothing is working I just get horrible side effects. I try to exercise regularly and I’ve also gone vegan. I feel like I am just meant to be in pain for the rest of my life. I’ve had fibro for 1.5 years, and I’m only 21 and because of this condition I’ve had to give up important things such as college.
Cinda Crawford 01.14.10 at 9:06 pm
Oh Emma, please don’t give up… not anything! Except maybe Fibro. You have my and everyone’s permission to do that. Hang in there & let me know if I can help you out. I really… REALLY hate to hear of people as young as you being so incapacitated. It affects me greatly. I was extremely sick for over 15 years and I know just how much this illness can take away from you. I’m sending blessings your way to your boyfriend. I pray for both of your hearts and for much strength in hanging in there! Gentle hugs, Cinda
Cinda Crawford 01.22.10 at 11:04 am
FYI: Apparently a group is calling for the recall of Savella as a drug to treat Fibromyalgia. Find the article and read for yourself.
http://www.gouverneurtimes.com/st-lawrence-news/54-worldnational-news/10848-group-urges-recall-of-drug-for-fibromyalgia-.html
Good luck and gentle hugs,
Cinda
Melissa Bastian 01.25.10 at 11:02 am
To Emma above – I can’t say I know exactly what you’re going through, but I can tell you that I got sick when I was 17, so I do know what it’s like to deal with chronic illness when you’d really like to be establishing your adult life and not dealing with something so difficult. I also had a LOT of chemical problems in my teens and early 20s, and when my docs put me on SSRIs and the like I had very similar experiences to what you’re describing. (I saw dragons in the lake, I became part of a wall…) I started a blog and wrote a zine specifically addressing the struggles of young people dealing with chronic illness, because so much of what’s out there about fibro is more geared toward people who are already married and established, in a totally different place in life. Oh, and I’m also vegan! This post of mine should link to my blog – please please please feel free to contact me if you ever want to talk. I hope maybe you’ll come back and read this.
Anyway, to my Savella experience.
I have just, in the past couple of weeks, weaned myself off of Savella after an unsuccessful trial of a few months on it. I started with it in the end of August because things were getting so bad. I’ve been dealing with fibro for almost 15 years now with a pretty high degree of success, but for some reason over the course of 2009 everything about my health rapidly declined. I was looking at needing to leave my job if something didn’t change.
So we gave it a shot. And it helped a bit, but it hurt as much as it helped – as it turned out the increase in migraines and the way it screwed up my stomach were just as debilitating as the levels of fatigue and pain I was having without it. At home with a migraine and terrible stomach pain, as far as how much you get done in a day, is just not so much different than at home with terrible overall stiffness and a spasm in your calf that just won’t give up. What a trade-off eh? Oh, right – and I was getting hives every day. I don’t know for sure that it was the Savella that was giving me hives, but I can tell you that as soon as I started tapering off of it they went away. So yeah, clearly not the right drug for me.
Now we’re talking about putting me on Cymbalta, because it’s rapidly becoming clear that I’m no longer functional without some additional level of medication. But as it’s also an SNRI I wonder how much different it will be…? I truly hate the medication guessing game.
joanne 05.20.10 at 9:27 am
RA doctor has been treating me for fibro for at least 7 years. I probably had it much longer than that. I have a lot of pain. I had an AWFUL back epidural, NEVER should have happened, felt the whole entire procedure. Just a crazy ordeal for me and the doctors were so unprofessional they actually made me cry and belittled me. I’m not a cryer…(This is when they wanted to do a SECOND epidoral because they couldn’t understand why i was in so much pain, i litterally could not stand up strait, and I am an avid yoga guru for 15 years plus). Just a terrible experience. I am on tramadol 50 mg (I can take 2 tabs bid, but only take it as needed, usually in morning and sometimes at night) soma too the same way. I have been on cymbalta. I never saw any difference for the pain. But WOW, what side effects! I experienced the head zaps for months. The only thing that subsided the withdrawal was benedryl, a Godsend…After the epidural, my life has been like a seesaw. I literally stayed in bed most of the time. I exercised (yoga, etc, whatever I could do, because I know it’s important for pain, whether, fibro, arthritic, etc. I have classic symptoms. IBS, divitullitis, recently found out I have osteo in right hip and right femur thru a bone density. I have had high blood pressure, dx when i was 18 (genetics) my kids too (ages 21,22, and 28) also MVP with an erythmia. Some of the savella sites are crazy scarey, but I usually take it with a grain of salt, until I found out there may be a possible recall. Yes, my blood pressure goes up and down. I have a regular cuff and meter, and have much medical background. Since the widrawal symptoms of Cymbalta were so harsh, and I know savella is relatively new (been on it for about 6 months or better:5o mg bid) I can’t find any info on weaning from this. I guess I’m going to use my common sense. because most docs don’t know either. I started taking 50 mg every other day. So far, no side efects. I am starting now with 25mg but only have one left. I’m thinking I’ll see how my body adjusts to this. Savella didn’t do anything at all for my pain. Actually the tramadol and soma takes the edge off.
I was hoping SOMEONE out there would have an answer about weaning off this med. Some other eide effects I am experiecing with the weanin are headaches (and I do take tramado for migraines) and the blood pressure raising. No racey heart, but that is probably due to my blood pressure med which is a beta blocker and slows the heart down anyway. Also experiencing much more erythmia.
SO DOES ANYONE OUT THERE KNOW THE CORRECT WAY TO WEAN OFF SAVELLA? \
Much appreciated, and all be careful when getting off these meds. Some of the witdrawal symptoms can be just as bad, if not worse than being on the drug. It takes a while to get out of your system, just as it did to get into your system
Cinda Crawford 05.20.10 at 5:41 pm
Joanne, I don’t have a clue how to get off of Savella. So sorry. I will tweet your request and send to Facebook, too. Maybe someone who does know will see it and respond. Best wishes, dear. Sounds like you could use some good help
) Let me know if I can help is your “healing” any further. I’m happy to get involved, but remember, I’m no doctor.
Take care, Cinda
Katrina 05.24.10 at 9:32 pm
Joanne – Just wanted to say that Tramadol specifically is listed as a medication that should never be taken with Savella. I too plan to wean off of Savella and I am assuming it is the same as other drugs of this nature. I just don’t know if we can break the pill in half.
Good luck,
Katrina
Cinda Crawford 05.24.10 at 10:26 pm
Katrina, thanks for your comment. I hope that it helps Joanne and others. It can be very tough getting off some drugs. :-/ Cinda
Angie 09.24.10 at 11:18 pm
I was on Savella for about two months. I had explosive migraines while building to full dosage. I recently weaned myself off of it. I started by splitting the pills in half and taking twice a day, then in quarters twice a day, and finally taking a quarter once a day. I have had some mood swings and a lot of episodes of my heart pounding/racing. I haven’t been able to find any information about going off of it either. I didn’t get any relief from the fibro. pain while I was on it.
Cinda Crawford 09.26.10 at 11:02 pm
I’ve heard of other people who have trouble getting off of Savella. I have no knowledge of people getting better from the illness after taking it. I just don’t. I can’t help but think that there must be a better answer for you somewhere than relying solely on drugs. If you’d like to talk further, give me a buzz at cinda@getwellhealth.com & we’ll arrange to talk. Thanks for your comment Angie- take care.
Rose 02.03.11 at 4:54 pm
I’ve been on Savella since December 2010, I am also taking tramadol and cyclobenzaprine for pain management. I have to say that I havent had any bad reactions. The only thing negative about Savella is that if I dont take the evening dose by 5pm I cant fall asleep until like 2 am. Ive tried Lyrica and cymbalta and I definately wouldnt recommend those medications to anyone for treating Fibromyalgia.
Cinda Crawford 02.03.11 at 5:56 pm
That’s valuable info, Rose. Some people do well with Savella and some experience bad reactions. I’m glad it is working for you. Have you tried other things to help you get well besides prescription drugs?? Just curious.~ Cinda
Lisa 02.10.11 at 7:15 am
Hi there, I have been on Savella for 2 weeks now, its working GREAT for me! I can only take one 25mg pill a day which I do in the am. When i tried to up to 50mg I felt sick and my BP was to high ( I have a monitor at home) I can actually get out of bed and move and have so much energy. I was on adderall and I have weaned myself off of that which I am so happy! Because adderall is a much worse drug and is highly addictive. My fibro seems to be under control, still have some pain but nothing I cannot deal with. The gym helps greatly and not eating gluten (also have Celiac and Raynauds) I am extremely sensitive to meds so for me the once a day 25 mg works, I do not plan on ever upping it as I dont think I need it and I am not a big fan of medicine to begin with. Good luck to all!
ALicia 06.18.11 at 3:02 pm
I have to say I wish i knew the effects of savella before i took it i have had nothing but bad reactions since i went up to 25 mg i ended up in the hospital twiced this week because of it, i quit taking it , maybe somoen shuld have informed me to get weened..still fighting the effects of the meds
Cinda Crawford 06.18.11 at 4:10 pm
Alicia, it’s pretty much a given that if you take any of these specific Fibromyalgia drugs (Lyrica, Cymbalta, Savella) and a lot of other high-powered drugs that you have to wean yourself off of them. Did you ask your doctor about coming off of them? How? When? How much at the time? Over what period of time? I’ll consider asking a doctor that question the next time I get to interview one. But for now, check out the remarks of Dr. Charles Lapp, an interview guest of mine. A snippet of the interview this week on the Health Matters Show pertains to these drugs & he has quite a bit to say about all three. Plus, you might want to listen to the podcast regularly or catch the blog through the RSS feed. I try to cover a lot of ground. Please…please take care of yourself and go slow. Fibro is a tough illness and which one drug will help you sounds like it is yet to be discovered! Best wishes, Cinda
Barbara 06.18.11 at 7:12 pm
I started the titration pack 4 days ago while still taking Lexapro 10 mg. I discontinued Lexapro 2 days ago. I have been closely folllowing the directions given to me by my doc. Today was my second day of taking 25 mg bid. I have had flu like symptoms for 2 days. Chills, hot flashes, feel like a truck hit me, increased heart rate. Now today, I have a very slight tremor and some dizziness. I don’t know if it’s the Savella, coming off Lexapro, or both. I feel really sick.
I keep telling myself that I will feel better and keep pushing through. But I am scared to continue like this.
I don’t have fibro. I have entrapped nerve in my ankle that has severely limited what I can and can’t do. I am super sensitive to medication and have tried everything out there. All have caused major side effects. This is my last ditch effort. So now, I am discouraged because the doctor had built this drug up to be amazing. Well, it may be for others but not for me.
Any suggestions?
Cinda Crawford 06.18.11 at 10:45 pm
Barbara, there is no way I can respond to telling you whether to take a drug or not. I’m not a doctor. But…I will say that when something “feels” threatening in any way, it just may be. I think we patients have to listen to our guts and our hearts. Doctor looks at cells, fluids, organs and bones. But you are on the inside looking out. You’re the one who feels uncomfortable. What I do know is that alternative care works wonders for some people. I’m happy to help you if you want to seek care in Sacred Cellular Healing, what I do on a one-on-one basis in person and with distance healing.
Also, I also know that Dr. Bernie Siegel has had luck in helping repair neuropathy in peoples’ extremities. I believe neuropathy is another type a nerve problem. Maybe he could help. He offers non-traditional solutions that are non-drug oriented. If you check him out and decide to use his services, tell him Cinda Crawford referred you to him. I interviewed Dr. Siegel this last year on my podcast and for a longer interview. He is a neat man and is very friendly! Best wishes, Barbara, and keep in touch~~ Cinda
trudy 06.30.11 at 11:47 am
The drug rep told my doctor that Savella was safe to take with Prozac. Good thing I felt compelled to research it first. While Savella isn’t FDA approved for the treatment of depression, it is an SNRI and taking it with another antidepressant could result in serious illness or even death. Stopped the Prozac (which wasn’t working for the depression anyway), started the Savella and have stopped the Savella. It worked very well for my fibro but the depression worsened and I had some very strange side effects. Felt like I was watching myself and had to “talk” myself through even basic activities. Knowing it can take awhile for a med to become fully effective I gave it a go for four weeks but knew I couldn’t keep taking it. Just too sick.
I titrated down this week and started a new antidepressant. Not quite sure what I’ll do about the fibro.
I am really glad I checked out this site. Not only am I happy to find the support but my husband has horribly painful peripheral neuropathy. Cinda, your recommendation to Barbara about checking out Dr. Siegel was an answer to my prayer. Not sure he can help my husband but we’ve exhausted other routes. I’m really glad to have found a new one.
Cinda Crawford 06.30.11 at 12:51 pm
Dear Trudy, I think it’s always wise to take the most precaution about mixing drugs. Always. You’re a smart cookie! I wish you well in your endeavor to finding something that will work for alleviating your own Fibromyalgia symptoms. In addition to checking out Dr. Siegel, you may way to check out what I do in helping people get well. I can do at-a-distance sessions with anyone. You don’t have to come to Virginia, although it’s mighty nice this time of year.
Check out my page on getting personal healing sessions with me at Sacred Cellular Healing -or- consider enrolling in my Learn How to Heal Yourself membership course. If you go this route, I recommend the Platinum level, because that’s where I can give you the most help for your money and time spent in the course. I know how badly you want to get well! Plus…if you go through the 12-month term at the Platinum level, you will be eligible to apply to be an “Sacred Cellular Healer”. That means you could work on not only yourself, but also on your family, friends and clients, if you chose to go into the business.
Best wishes. Let me hear from you. Feel free to email me at cinda@getwellhealth.com, if you have further questions or want to book some time to talk on the phone or via Skype. I’ve just instigated my new “free” 15 minute consultation offer to everyone! (See page: 15 minute “Free” Consult!) Thanks, Cinda Crawford
kristina 07.08.11 at 1:05 pm
I have been on Lyrica for 2 yrs and that is the only medication that has helped. cymbalta makes me so tired i couldnt get off my bed and I had a 2 year old at the time. I am currently on 40mg prozac for OCD and Depression, 600Mg of Lyrica for my back pain from fibro. If i dont take Lyrica I am in tears cause my back is so stiff i can’t take it. I also take 1 mg of Adivan for anxiety and to help me sleep. w/o Adivan I won’t sleep threw the night. Before I started all these meds I would sleep till 1 am and be awake till 6am in pain. I had a new baby and for 2 yrs never slept and after i had him my pain started.
I have had 2 Epi’s and 3 steroid shots , they burnt the nerves in my tail bone and nothing helps for long. My dr wont put me on pain meds and i cant get much relief. i was just given Savella cause that was all he would do for me. So i finally after 2 months tried it. I was terrified it was gonna make me sick as that was the side effect most people complained about. so I have been on it for 2 weeks. It made me feel like my head was floating, my moods were up and down. i would feel like crying one min. and loved everyone the next min. i was depressed the next min. it was scarey. I just stopped taking it cause i was getting migraines and 4 aleve and a vicodine didnt touch it. i had to put ice packs on my head to get any sense of releif. my skull actually hurt if you touched it in teh front and you could feel my heart beat if you touched my head. I didnt notice any difference in the pain in my back.. my spine cant seem to deal with my upper body weight. unless i am laying flat my back hurts. So i just stopped taking savella. today is first day off and my head is fuzzy.? y i only took 12.5 mg a day i couldnt do the pm or i would wake up at 4 am and couldnt fall back to sleep. so i stopped the pm. i read up on savella. and found out that you cant take prozac or aleve or ibuprofen when taking this med.. my dr knew I have been on Prozac for 3 years. I am now trying a new Rheum. Dr as this one will not help me refusses to give me any pain meds. i was on darvacet and then it was recalled so now i have nothing for the pain in am in winter that keeps me in bed most days till summer. the cold kills me. i live in my bedroom with a heater so my room is like 80 degrees. my fiance can’t take that kind of heat and my heating bill would be crazy if i was to heat the whole house.. so when i go into another room that is colder its like a shock. i am stuck in my house all winter. now I am having pain , cramps , burning soar skin down teh back of my right leg and the top of my foot is numb and ifyou touch the skin it hurts. i told the pain managment dr i saw and he did nothing. now i am going to my pcp cause this is not normal.. and my back went out 2 weeks ago before the leg started. i have been getting this on and off for years and didn;t know what it was.. none or my specialist seem to take this seriouse, but i looked it up and it is seriouse.. its something with a nerve in my spine. I wish i could find a dr who will listen hoeping my pcp will help me.. cause the rest seem to just get paid $$$ and do nothing for me… Lyrica helps me alot it took along time to get used to it. it will make you feel high or fuzzy for a while but it helped my stiffness. doesnt help muscle pain only arthristis. Savella i wouldn;t reccomed look at all the medication warnings you cant take anything with it and the migraines are unbearable…
Cinda Crawford 07.08.11 at 11:31 pm
Dear Kristina, your situation sounds complicated and distressing. I’m sorry you’re in so much pain, but thanks for sending in your thoughts about Lyrica and Savella. Not everyone has as much trouble as you’re having…,but unfortunately many do. It would be so great if there was the “perfect” choice, don’t you think?
Kroma Artazen 10.02.11 at 2:45 pm
I am feeling so sick after trying Savellia, I hear nothing but ringing in my ears and I now have high blood l pressure. Pain is very bAd and I can’t stand to be who I turned into
Cinda Crawford 10.03.11 at 1:29 pm
Hello Kroma, I’m sorry to hear that you’re having such a bad reaction to Savella. Have you told the prescribing doctor how the drug is making you feel? That could be really important. If you haven’t been on it long, maybe your doc will let you come right off of it and the symptoms will (may) disappear. If you’ve been on it awhile, you really need your doc’s help anyway because many drugs can make you feel worse to drop them suddenly. Good luck & keep in touch. I hope you feel better soon
Cinda
jan jeffus 11.17.11 at 4:47 pm
I took savella for about 3 months and my blood pressure went from 110/60 to 140/115…..I decided that I could deal with the pain I had from fibro, but I could not deal with the high blood pressure…I weaned my self off by reversing the dosages I took to get on it….now 6 months later….my blood pressure is still out of site…I am taking 10 mg of Bystolic and this morning at my weekly bp check…it was 140/95. I am scared that this drug has screwed up my body…I am 61.
Cinda Crawford 11.17.11 at 5:43 pm
That’s a darned shame, Jan. Maybe you’ll see your BP gradually lessen over a few more months…unless it’s still elevated BECAUSE you’re stressed out BECAUSE it’s so high. Merry go round? Maybe. I wold encourage you to try to do some de-stressing exercises and take a mental and emotional break. Those things alone may help the Fibro symptoms, too. Best wishes, Cinda
Jan Bunker 11.20.11 at 2:20 am
Tomorrow will be my last dose of Savella. Been on it since it came out–(before that was on Effexor– that actually caused major nervous breakdown and lost complete touch with reality for 2 weeks). Rhuemetologist kept upping dose of Savella over the years til I was finally at 200mg. Another Dr noticed my blood pressure and pulse– sky-high. Guess I had “seratonin syndrome”"- didn’t know there was one til I just read it– but I’ve titrated myself down 25 mg every 2 weeks for months. Feel better–horrible symptoms are abating– still have rapid pulse and cold extremities but pain is actually better!! (so why was I taking this?) Hoping I can just deal with the fibro with no meds…
Cinda Crawford 11.20.11 at 12:51 pm
Congratulations, Jan. I’m proud that you are taking your health in your own hands and assuming the responsibility. Serotonin Syndrome can be life-threatening and I’m glad your symptoms are getting better. I urge you to search on this website for “Flupirtine” and see the post and some of the comments. This could be good info for you, too! Blessings~~ Cinda