Anyone Else Trying Savella For Fibromyalgia? (Page 7)

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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hmm... interesting. I cannot settle down for bed. I take my pm dose around 9pm. I had mentioned to my doctor that I feel physically better after my evening dose, and my doctor said the time of taking the savella is to maintain the level in the body, but I HAVE to MAKE myself take my xanax so I WILL go to bed. If it were up to me, I think I'd stay up all night. I guess it might be because I feel decent and because I know I hurt when I wake up. Either way, I never want to go to bed. Anybody else like this? I wonder if it is related to savella, or if I'm just having a mental hangup..... anybody?

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another p.s. When I told my doctor that I have a hard time settling down for bed, she gave me samples of sleeping aides... three different name brand, lunesta was one of them, anyway.. when I took it, I had the OPPOSITE effect. Wound up until I took Xanax. Anybody else have this?

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Hi Everyone,
I just started Savella a week ago. Fibromyalgia pain is much decreased. I was taking 6 Ultram a day and my Doctor yelled at me. He put me on the Savella and I haven't needed the ultram as much.
One thing about me: I hate taking meds! When I was younger (20yr) (now 45) I couldn't remember the birth control either.
I blame the forgetfulness on Lupus Fog It affects short term memory.
Your posts have been most helpful. The reason I am posting is because LORI was talking about grounding. This method can be helpful to many, BUT Lori, you have been diagnose with Raynauds. Raynauds causes severe pain in the hands and feet with cold weather. Arthritis gloves are the best for the hands. Underarmer socks for the feet. Bare feet and Raynauds= pain. Even if it is just your hands with the problem, exposing your feet to cold will cause a problem with your hands. I have had the disease for 8 years. And I have had Sjogren's Syndrome for 10 years.

For a couple days on the Savella, I did experience dry mouth, but then it eased off. I do feel more depression. I have been taking Effexor and have been easing off it.
I am optimistic about the Savella.

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Dayna, Thanks! Arthritis gloves come from where? Is a prescription thing? and the underarmor sox? I wear my wool sox in the winter. in the house, in bed, in shoes, etc. The trouble with the raynauds is it is another thing that isn't a constant... meaning that it will be severe for 2+ weeks, then I'll have days that I can go out (in North Mich winter) no mittens or gloves get my hands wet with cold water from feeding the dogs and nothing goes white. Then, air conditioned or even cooler buildings turn myfingers white as snow. My doc sending me for lab tests on lymes disease, just because I asked and hadn't been ruled out yet. Also, have to have other labs to go see the rheumatologist. I just got a tens unit (that's awesome). I got a pretty severe flare up of severe pain the last 10 days or so, but of course, I have shingles, so I couldn't even get the trigger point injections. That's why the tens unit. Savella sometimes is not enough to handle the depression side of the fibro., talk to your doctor about welbutrin or zoloft or another to compliment. savella is more on the side of the pain management than the depression management. Oh, latest and greatest advice. 30 minutes of good sweaty excercise. Graduate up to that much. Both my regular MD and pain specialist stressed that this past week. Laptop on my lap makes me sweat, these things sure do get warm. hehe. I also tried out the z-coil for shoes. Had four different 'adjustments' between the lifts ad the coils. If any of you have the chance to check this out, do it! Once they were customized to my physical needs I had a great walk. My really bad pain spot at C-5 had no pain at all when I was walking with these on. My breathing was way better because of proper alignment of spine. Strangely, my headache went away. Came back shortly after I put my crappy shoes on. There is a study right now on these things with a pain management Dr. at a spine and pain clinic. Anyway, they are pricey so I put one pair on layaway. I'll just pay as I can until I am there. Might even be reimbursable with a prescription from Dr., and z-coil ppl said they get alot of prescriptions for them. Oh, on the shingles, I was given prednasone. I have side effects of mostly upset stomach but it is only 7 days. I'm halfway there. Whew. I get alot off my chest here. Thanks for the info Dayna. I will see about that but if you could tell me where to find these arthritis gloves would be a great help. Take care everyone. Have a fun day!

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I was taken off the Savella prior to stopping the valium. The savella was definitely the problem. I have taken valium in the past prior to an MRI and had no reaction. I have never had such a horrible reactionto any drug. The side effects from savella were hostility, anger, suicidal, insomnia, heard things, saw things, fecal incontinence, road rage, I was planning my suicide, horrible hot flashes which turned to cold and shivers then I would sweat, vertigo,hypertension 215/107. It was absolutely horrible and I would never advise anyone to try this drug.

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to Deb:
You have mentioned this before. Just because it was bad for you does not make it bad for everyone else. Please remember when posting that this is to share information; not to scare the hell out of people from using a medication that has helped so many of us. I hope you find the proper medication that will help you. Good luck in your efforts.

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Lori--I have the same problem of not wanting to go to bed. I will go 3-4 nights with no sleep at all and then my body will just shut down and crash. It seems when this happens I sleep much better... However I'm not getting enough rest that my body needs which in turn makes the FM symptoms go haywire. I do have Ambien but will stay up all night with it. I really think it has to do more with depression and chemical imbalance. It's not the Savella causing it for me because I haven't been on it for months. My insurance co.
(HUMANA) will not approve it for me even after my neurologist wrote a letter explaining the need. When and if I can get it I will start taking it again because it gave me the most relief out of all the meds that I've been on. Heres to a good nights rest!

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Thanks Lori, I was simply replying to your question that you asked me. I am not trying to scare anyone. If it works for you I am glad. Everyone is different. I do feel it is a dangerous drug and people who are on it should get a B/P check often. I feel everyone should be informed of the side effects of drugs. Doctors will often try to add more drugs to stop the side effect of another. I keep myself very informed. Thanks and good luck to you!

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Hi Lori,
The arthritis gloves are best priced at Walgreens online. Companies IMAK and Therall are the main ones. There is another one that isn't fingerless and works instantly, but picking things up is problematic. However, being in Michigan, it wouldn't hurt for you to have both. Go fingerless first and make sure you do small or medium. Large is for man-sized hands. Imak sells the gloves individually for around $14.99 (there isn't a right or left to worry about, you just order two boxes.
. Therall sells the two for $29.99.
If you don't have the gloves...in an emergency for a very painfull attack...keep hothands on hand. Once you open the package...the pouch begins to heat up. Then customize an ace bandage to be able to wrap around your hand. You are going to place the pouch on the back of your hand and wrap the bandage around your hand. Keep it there for the day.
Raynauds pain can be excruciating. I take blood thinners to control it. But you are right...it is not a constant. Cold weather is the factor. I take the blood thinners until March. But I am in California.
If you can take Aspirin, that's a blood thinner. I can't because I am asthmatic. Aspirin and asthma equals bad.
It was good hearing from you Lori.

On the Savella I do get the sweats, but I figure it could also be my body weaning off the Effexor or my body adjusting to Savella. I like the pill so far, so I am going to hang in there.

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Hi! I posted several weeks back when I first started on Savella, and just wanted to update all of you on how great I am doing. I do struggle with the dry mouth, but found a spray which I use just before bed or when I have to do a lot of speaking that helps tremendously. I have not felt this good in over 15 years. Keep in mind the Savella is in addition to the meds I already use: Welbutron and Savella every a.m., and Savella, Cyclobenzapril, and Imiprimine in p.m. The addition of Savella has helped tremendously with the pain, fog, energy and even taken the last bit of depression away. I know it will not work for everyone, but I would encourage everyone to give it a try. After 15 years of chronic pain, fatigue, and depression from the pain and fatigue, I am thrilled to have found the magic combo for my body. Good luck to all, and remember, don't give up. Keep hounding your doctor until you find the right combo for you.
Darcy Birdsall

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Teresa and Lori, I have had trouble sleeping as well. I'm still unsure if its savella or just part of the lupus, fibro, arthritis stuff. I do try to go the two nights or so without using something for sleep then I do use the ambien, I've been able to take a half of the 10 mg and been able to get good REM sleep (doc says thats what the ambien is supposed to give you) for at least 5 hours. Teresa, I used to work at a medical clinic, docs have ALOT of pull with drug representatives, my doc has gotten me two months worth of free samples from drug rep, ALSO drug companies offer programs to help pay where insurances won't, have you asked you doc?, it would be worth a shot. Good luck to all.

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Tessie,
Thanks for that info--I'm going to Las Cruces on the 10th to see my Neurologist and I will ask about getting more samples from him. He said he couldn't keep me supplied with the samples forever. Which I understand because I'm not the only patient. I have to go to my Dr. on Monday (flaming hot UTI) and i'll ask about any programs they might know of. Thanks Tessie for the info, the words of support and for sticking up for me when Just Me & Sharon got bent out of shape! That was great-!! And here's to a good nights sleep for us fibro-insomniacs!

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hi Teresa and Tessie
I look up the drug co. online, and found the customer support (I think it was something like that) made a phone call and asked for financial assistance for the savella. They mailed me forms, I was to fill out my portion, the doctor then fills out her part on the script, mail it. then the Rx co. sends the Rx right to the Dr., you pick it up from them. I have a $50 copay, so I didn't fill it out. Oh, and on the subject of the aforementioned subject of Tessie standing up for Teresa; I too thank you. I was riding somewhere in Georgia and I read that on my blackberry. I was hopping mad! I wrote a lengthy retort and the security code at the end of this post a reply section gave me a problem, so I thought I went to re type the code and the thing just disappeared. Bad enough I had written an entire page on a freeking little teeny tiny keyboard but to have it disappear! So, thank you from me too, to both of you. We should have coffee. LOL One more thing to keep me up all night. It is going on 3am. I really think I'm tired right now. Anyway, call the company and then the doctor can help you out without it coming out of his pocket. .... heh.

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Lori- I got such a good laugh from your post~you made me think of myself when I've lost an entire manuscript I had been working on for weeks..I know you're suppose to save, but I thought nahhhh I won't lose it. Very frustrating at the time, but is good for laughs later which we all need. Thanks for the info on the Savella. I'm going to do my best to get it because like I've said before it actually worked for me! I can only imagine how well I would feel after 6 months or so... Obviously, judging from several posts it doesn't work for everyone but overall it seems to be helping the majority of us. Hopefully it will catch on and other drug companies will distribute it under who knows what name(s) how about Resculla? Thanks to you and Tessie again for coming to my Rescue!

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To Teresa,
I could not sleep on savella either.Going back to the Zoloft and adding klonopin I have been sleeping all night with my cpap on.

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I last posted on 12/4/09. To say the least, I am envious of those who are able to take Savella. Unfortunately, it created an extreme case of tachycardia my cardiologist was not comfortable with. However, I was one of those that got some benefit from taking Savella.

With that said, I have been in absolute limbo since discontinuing Savella. The rheumatologist threw up her hands and said she didn't know what to do for me. She gave me Neurontin as a panacea but she didn't expect much help from it. And it wasn't! I went back to my GP with my concerns about the Rheumatologist and she referred me to another doctor. This doc is worse than the last. On my first visit he spent less than 2 minutes with me. He ordered xrays and sent me on my way. When I told him I needed help with the pain, he told me he couldn't do anything til he had a clearer picture. Excuse me, I understand what you're saying, but I am in an IMMENSE amount of pain. Can't you see the amount of distress I'm in? Evidently not!! I had the xrays, gathered ALL my med recs and showed up for my next appointment with this quack! Yes, I called him a quack!! Anywho, I actually got about 5 minutes with him this visit. Supposedly everything looks good and doesn't indicate any bony issues. I do have some arthritis in my neck and spine straightening. I had to press for information concerning that! According to this doc the spine straightening is due to the intense, constant muscle spasms my body is experiencing. OK???!!!??? He sees that my body is in spasm, that I'm in pain, yet he has no idea how to help me??? I don't get it!! I told him I NEED HELP!! I don't know what a good nights sleep is, I hurt constantly, I have constant fatigue and fog and most days I'm in bed ALL DAY!! HELP ME DAMNIT!! He finally conceded that he could prescribe Flexeril to help me sleep but he didn't feel it would help with much else. If there wasn't a risk of going to jail, I could have strangled him at that point. He ordered more bloodwork (nothing that any of my other docs haven't already ordered), grudgingly gave me the Flexeril script and told me he'd see me in a month. UGH! Nothing else! No other solutions! ...... Another doc who basically is throwing his hands in the air.

My insurance SUCKS! I have no other Rheumatologists on my plan I can see. Physical or Massage Therapy is not covered on my plan. I have to jump thru hoops in order to move up the ladder to other doctors (neurologists, pain specialists, etc). And most meds are not covered by my insurance. Those that are, are at the highest copay I simply can't afford. I don't qualify for pharmaceutical programs because I have insurance with a drug plan. In the meantime, I am in a never ending circle of pain and useless doctors.

Despite all this, I am truly trying to look on the bright side (if there is one). I am trying hard not to concentrate on the pain. It's hard! VERY HARD! But I have to do something or I'm afraid I will end up doing something very drastic.

Do any of you ladies know an ACTIVE message board/group on the web dedicated to FM? I really need to connect with other people and get some feedback. FM is still so new to me and I don't know where to go. Plus, making friends with someone who understands what I'm experiencing would be great. Any help or suggestions would be appreciated.

Thanks so much!!

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Rebecca, I'm sure most of us UNDERSTAND your pain and FRUSTRATION!! The system sucks, most of the doctors suck! That being said you can't give up. Before the Savella I had taken Cymbalta which did help some (more than any others I had tried) and it did help me more with sleep than others. I didn't like the Lyrica but I had a stomach surgery in June and I couldn't take it cuz of that, its supposed to be a good one for the fb. I don't know of any sites right off, if you find a good one let us all know. I have said numerous times in my pain and frustration that I wish all doctors had to feel what their patients feel to be qualified...lol...if only that were possible. I went to a doc a few years back that was different She prescribed water exercising, Ensure (because it has all your vitamins and is easily absorbed, which fb tends to make your body not absorb things right, as well as a million other things we all know) and stress reduction cd's or tapes, etc., I know this doesn't help severe pain but I did feel better doing those things. Since then I am now walking and feel better when I do, as we all know its just making yourself do it cuz you feel like...*^%$. Hang in there. I do still have at least one Ensure a day and I do notice a difference when I don't. TERESA & LORI, hope all is going well and no problem about sticking up for you, people can be dumb sometimes, I do believe its them that misses out on all the good info. Goodnight...lol...to all. Early dentist appointment in the morning hope to get some sleep. You know we could start our own fibro forum somewhere, I'm sure its possible, I'm just not sure how.

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Regarding a fibro forum. Lets do it. I think yahoo has a way to create a group/then there is a somebody called a... something... that accepts peoples requests to be in. The group usually puts in place a few manners rules. And it's a place to share info and you get it in your mailbox or in your visit to the website. Also, there are online chats. There is one through google I believe. I'm sure of it. Another fun thing would be to just do a telephone conference call. Nice to just everybody say hi hi. I could find one, then post a date/time (some weeknight - obviously it could be really late with some of us insomniacs) for everyone to call in toll free, dial a special code announce your name and that's it. Talk for as long as you want, usually that service is free.
I think that would be a hoot! I want to hear voices (not just the ones inside my head). By the way, I met a lady last night who has lymes disease. She was by far the closest as far as symptoms go to me. Even where I get lost coming home from an everyday drive. Driving along and all of a sudden panic! Not knowing where I am at! She has that one too. I think it's interesting - any of you have that? The wierd thing for me is it always occurs at about the same locations each day, and always while in the southbound lane. Strange. But, then... I can at least take comfort in knowing that I am a unique individual, and can confuse even the most educated medical doctors. Hehehe. Seeya, lets figure that forum or chat thing out; first one to find a method post it, available for all who just want to participate. Nobody is holding a gun to anybody's head. Sound like a plan? seeya, Lori

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Thanks Tessie.

Unfortunately, I have tried Cymbalta, Lyrica, Savella, Neurontin and now Flexeril. The docs have even prescribed antibiotics in case it may be an underlying infection causing my symptoms. I take over 20 vitamins and supplements, including Vitamin D. Still no relief. I exercise when I'm able. Typically I go down for the count for days after I exercise. It's horrible. The cycle is never ending. My family doesn't understand anything I'm going thru. They know I hurt constantly but can't sympathize with the intensity of it all. And the worst part of it all is the disconnection I'm experiencing with everyone. I can't enjoy anything. Can't participate in anything. Can't be normal. IT SUCKS! And I feel hopeless.

I scour the web daily looking for websites. I'm hoping to find something. If not, maybe I'll start a site. I don't know.

Thanks for the feedback.

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Rebecca,
will your insurance cover acupuncture? It was miraculous for my mom's rheumatoid arthritis. Even paying out of pocket isn't extreme.

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