Anyone Else Trying Savella For Fibromyalgia? (Page 8) (Top voted first)

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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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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Hi Lori & everyone - please let us know how we can help facilitate a more specialized forum for you guys. What features would you need in addition to posting back and forth with one another?

Wishing you and everyone on here good health!

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Personally, I would like the ability to have a live chat together, maybe once per week. If that is something you could arrange, that would be fantastic. What about everyone else? I can't ever make it to the saturday morning fibromyalgia support groups. I would enjoy visiting more with people who understand what this is like. Thanks.

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Prescription Drug Info:
WOW!! My thanks to you to offer what you can do to help make this site better fit our needs. Don't know about anyone else but that makes me feel pretty darn special so once again THANK YOU so much. I would like the ability to personally email someone, that is only if they would accept an email from me, vice-versa. I have truly enjoyed this site very much and have found it to be very helpful.

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Thanks everyone and prescription drug info...That is NICE!! I like idea of sharing email, etc, I'd accept you Teresa, I think we could share and then just not accept anyone we haven't talked to on here??? I'm not that internet savy or as good at knowing technical stuff about phone conf like Lori but it sounds GREAT!! Let me know I'm up for it.

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WOW! Having our own FM forum would be great. It would give those who suffer (and those who have someone that suffers) a great place to go.

Thanks Prescriptiondrug info for the offer. We would love it!

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Thank you Lori, Teresa, Tessie, & Rebecca for your feedback so far!

You have certainly provided some positive ideas which we are now taking to the drawing board. It has always been our goal to provide a helpful service for everyone, and these latest suggestions are wonderful.

It is our intention to continuously enhance the community to best meet everyone's needs.

Thanks again and we will keep you posted. We may also contact you to participate in beta testing certain features once they are ready (if that is o.k. with you).

Sincerely,

~ The rxchat.com Team

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~ The rxchat.com Team,

You may contact me anytime. If there is any way that I can help I'm more than happy to do it. Your site has been a blessing for me not only with info on Savella but many other prescription medications that I'm currently taking.

Thanks so much for your dedication to the work you do to help others!

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Prescriptiondruginfo Team,

You may contact me with anything I can help with. This is so exciting.

Thanks so much for all the work you have done (and will be doing) to help us all out.

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Oh yeah! Count me in. Thank you so much!

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Hi, I have been reading comments for several months and finally decided to leave one myself. I have had fibro since 2001 and have been on everything mentioned in the posts. At times I was unable to get out of bed for days. I was a reck mentally and physically. All the meds made me gain weight so I was sick and fat. I finally had to give up my part time job. I have always been a never sit still kind of person but I just couldnt stand the constant pain anymore. Anyway, about nine months ago I started taking Savella. It made me very sick to my stomach at first but I stuck with it. Now I am working as an office manager (no more brain fog) and have gone from a size 14 back to my normal size 6. I can't say enough about Savella, it gave me back my life! I do have to take Ambin CR to get six hours of sleep but on all the other drugs I never slept over two hours at a time and woke up in pain anyway. I just wanted to say, It has taken me a very long time and many drugs and doctors to finally get here. So don't give up! You will find the right meds for you. God Bless

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Prescription Drug Info, Contact me anytime, I'd love to help and be able to talk and offer help and receive help from these other wonderful women I've been talking with, Its GREAT!!

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