Anyone Else Trying Savella For Fibromyalgia? (Page 3) (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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I was put on Savella , started to take it Friday night. I have awful nause, stomach and abdomenal pains, and heavy sweating. My pain seems decreased- DDD, chronic OA and chronic LBP. Been seeing a Pain Management Dr.and on Vicadin and had Thermo genic procedure to stop the pain. I have little desire to eat,
I want to give it a try, but the nausea is really bad....

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I have been on Savella for 7 weeks now (100mg twice a day for the past 5 weeks). I had always taken Ambien, so sleep was never a big problem with it. I did go through the hot flashes but they subsided after 2 or 3 weeks. I was able to discontinue my 40mg of Prozac. I'm not sure if the Savella is doing much for the pain, as I still have to take Darvocet daily. I have fibro., DDD, and spinal stenosis. I'm 60 yrs old

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Suzanne, I am curious as to what correlation you have found between the use of Levaquin and FBM. I have been on Levaquin many times as I am allergic to other antibiotics. I am really interested in how you arrived at the possibility there may be a correlation.

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I've just been diagnosed with Fibromyalgia, although this is not a concrete diagnosis so far. My doctor started with Cymbalta then moved on to Lyrica. Both made me beyond emotional, with Lyrica being worse, and neither giving any pain relief. I just started on week 2 with Savella. So far I've not noticed any significant change in the amount of pain I'm in. Still around a 7 (on a scale of 1-10). This is where I'm typically at on any given day. I'm also experiencing several side effects. Major nausea, although eating prior to helps a little, decreased appetite, horrendous headaches with extreme sinus pain and altered mood (feeling very BLAH). I have my doubts that I will continue taking Savella as there are no benefits to trade for the side effects. I'm wondering what my doctors next step will be.
****Side note: I also take 50,000 iu of Vit D as part of my therapy****

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Like Rebecca, I ,too take the Vit D. and 4g of omega 3. I have been put on a gluten free, dairy free,diet to see if we can pinpoint the cause of the inflammation with fibromyalisis. The diet is very difficult, but I am coming along. I will return to the Dr. in Dec. to see how this has worked.

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Like Rebecca, I ,too take the Vit D. and 4g of omega 3. I have been put on a gluten free, dairy free,diet to see if we can pinpoint the cause of the inflammation with fibromyalgia. The diet is very difficult, but I am coming along. I will return to the Dr. in Dec. to see how this has worked.

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I started Savella one week ago and at first it cause nausea bad (no pain though) but my doctor said thats a side effect until your body gets use to it. She was right i had nausea for three days and now i feel great no pain and I have a little sweating but lots of energy and no pain....I just had to say it again no pain....For those with Fibromyalgia the words no pain are a God send. So yes it was rough at first but after your body gets use to it, you'll feel better trust. Just hang in there. Thank God for Savella 80 % less pain

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Started Savella three days ago. The 12.5mg pills were making a definite difference to my pain levels with no side effects. Went up to 25mg this morning and got severe nausea - but I hadn't eaten yet. Will try eating first (per some of the other comments) and see if that helps, otherwise going back down to 12.5 2x/day.

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I've had FM, CFS, CP for years and haven't found any one thing that works well. I think it probably started when I was in my 30s but no it was not something anyone knew about then so I wasn't diagnosed until much later. I've had multiple traumas which I believe started these symptoms. I was in remission for a number of years, but had another trauma a few years ago and it all came back with a vengence and I haven't been able to get it under control since. I think perhaps age and multiple traumas have finally caught up with me. If I take a small amount of pain meds. every 4-6 hours I have much less pain. Dumb as it sounds I often forget to take the meds. until the pain starts. Duh! I am very, very sensitive to drugs. I've tried many and the only one that helps at all is the very old amitriptyline. I've found that many of the older drugs cause me less side effects. I think the newer drugs have stronger chemicals or something. Just a guess. Unfortunately nothing helps the profound fatigue I have sometimes. I have some fatigue all the time, but ocassionally, like visiting my children out of state recently, puts me in bed for a week at a time. As you all know (I assume you all know) exercise is absolutely necessary for FM whether it be light or not so light. I was in PT for several months and it helped a lot because the therapist knew lots of little tricks that helped. My insurance would no longer pay so I've continued on my own with a maintenance plan. It doesn't seem to work as well because I can't do some of the things I did with the therapist and I have a hard time gauging how long or difficult I can tolerate on any given day. When the Fatigue gets really bad and I can't exercise the FM flares really badly. It's a catch 22 situation. RE: Vit. D supplements. My Rheumatologist believes in it and takes it herself. She did blood work about 6 months ago and included Vit. D level. Mine was extremely low. I started taking Vit. D immediately in fairly large doses and I did see a difference. In fact, while I was visiting my children I forgot to take my daily supplements. I believe this is one of the reasons when I returned home I had a really, really bad flare of CFS, FM, CP. I 've started taking it again but haven't been taking it long enough to notice a difference yet. I saw my Rheumatologist today and we discussed the latest treatment, Savella. She thinks, perhaps, I could take it and told me to come home and do some research on it and we would talk about it the next time I see her. I love that she is so cautious and understands my sensitivity to drugs (almost all drugs). She just returned from a conference and went to all the lectures on FM, CFS and CP and said this is the treatment she is most interested in. I asked her about the recent articles I've read about the retro-virus that's come up AGAIN. She doesn't think the studies are adequate yet so she's very skeptical. I hope she's right, but will continue watching for info about this in the future. Thank you for sharing your experiences with Savella. I've started a Support Group here because I have lots of experience facilitating groups. Unfortunately the people who have attended so far are so depressed and have so many diagnosis that they only want a quick fix. I don't know how much longer I'll continue this group. I need some positive support and feedback. Any suggestions on what might be a good way to get this group going would be appreciated. Thanks again for all your posts.
Long Play (I'm using this name because it's an old nickname I was given many, many years ago. Only a couple of people know why. I prefer to remain anonymous for now.)

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I am a 28 year old, single mother of one. I have what's called a Chiari 1 Malformation. I have now developed Fibro along with it and Carpel Tunnle. I tried Cymbalta for about 6 months and it worked for depression, but not the Fibro pain and it also made me gain around 20-25lbs. My Rhuemotologist took me off of the Cymbalta and has prescribed me Savella. He says that it should help with the pain, but also make me loose weight? I just started it 2 days ago, and so far I've experienced an upset stomach for a little while after taking the pill, and sweating around my nose. I'm also experiencing the same yawning effect as I did with the Cymbalta. Once I yawn, I continue yawning every 5 seconds for up to an hour or so! Does anyone else experience this yawning thing? I will post again in a few weeks after I've allowed the Savella time to kick in.

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Lisa, I am familiar with Chiari. It almost ended the careers of two of my friends. One almost allowed a surgeon to operate on her for this defect, but fortunatley found out soon enough that he was a quack so she didn't go through with it. She's very glad she didn't because she found other ways to treat it that helped. She has not developed Fibro. I can't imagine dealing with both. I look forward to your post after you've taken Savella for a period of time. My Rheumatologist has told me it's up to me and I'm doing as much research as possilbe before I make the decision. The experiences of others who have FM, CFS will help me make the decision more than anything thing else. Thanks everyone for your posts. They help a lot.

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Hi - I haven't posted in a while.. but stay reading. I have been on savella 2 1/2 months. Now up to 100mg 2xday. I have carpal tunnel, neurophathy, recently found out I also have raynaud's syndrome, and I am sure I'm missing a few. I have been doing well, still doing physical therapy (aqua therapy is great for fibromyalgia) and have been getting trigger point injections every 3 weeks. This combination has been very successful. I wish I could get more than 6 injections per visit because the trigger point gets the needle, but unless the next one in the line gets an injection, it is not as much relief. So far, I'm doing well. I could complain, but it's not really necessary. I need to get I.V. iron for anemia (feratin level is 6) so after that, I should have a bit better of a memory. Anyway, just a short little update for the new girls. Also, I am doing some research on the effect of grounding (and the lack of it) appears as though it has an effect on fibromyalgia. Talk to ya'll later.

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Lori, I'm very familiar with the term grounding but wonder if it's the same as what you're referring to because I can't imagine how this could effect FM. I'm open to new info, but this is a little hard for me to accept and wonder if I'm misintrepreting what you are saying. Thanks for sharing your results of all your treatments. Can't imagine having anemia along with all others we have. I already have too little energy. Being new to this site I look forward to reading others posts.

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Hi Teresa, thanks for starting this thread. It really helps me to read others' experience and realize how lucky I am. To long play, yep, probably you are correct, grounding.. as in direct contact with your bare feet on the earth. If you google Earthing or the name Clint Ober, you will find the study he did. His book called Earthing will be out January 2010. It makes a lot of sense, and presents a whole new thought process. How many people here have Seasonal Affective Disorder? It will be interesting to see how mine will be this year, given the fact that I am on a Vit. D prescription. I also notice with the savella and wellbutrin s.r, and no longer on the lexapro that I am in a much better overall mood. Long post, sorry.. ramble ramble. That's me, the left handed right brained virgo with a short term memory problem. -Lori

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Rebecca, We all have to vent otherwise we would explode! Unless someone is suffering from chronic, unrelenting pain it is very hard for them to understand even to the point of them thinking we're totally out of our minds, seeking pity, and exaggerating the pain. I've been dealing with this since my late 20's and am now 54. The Dr's didn't even believe. I'm so thankful that it is now recognized as a real disease. I would recommend that you give Savella another try. You gave up on it way to early. Judging from the many posts it seems to be helping more people than it isn't. I'm hoping to receive my Savella this week. I know the nausea will come with it but judging from the posts it does go away and they feel better. Are you taking Ambien to sleep? I started it in July and am sleeping much better. Rebecca, I do hope and pray that you'll be feeling much better soon. I, also have enjoyed this link so much.It makes me feel not alone in my pain riddled body. Many thanks to all of you who have shared their experiences......Also my DR said SAVELLA works like an anti depressant but that is not what it is. Feel better and prayer works wonders for me.

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My doctor placed me on Savella about 6 days ago. I started having serious side effects like tingling, shortness of breath, difficulty urinating, electricity feeling on the shoulders, anxiety, restleness, and and overall feeling of pain all over the body.
I would not recommend anyone to go on this drug. It messes with your brain (pain receptors) and along the way has the potential to do some real damage. It is not worth it.

If you are on it, be very careful and if you start getting these nasty side effects, go to the ER.

If you are thinking about using it, don't. You will be taking a big chance with this drug.

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Teresa, I don't mean to laugh at you but I did LOL because you described me in many ways. I'm also a right brained virgo with a short term memory problem. When I started taking Vit. D 1,000 units 3X a day my pain was not as bad. Unforatunately I went on a trip to see my children and grandson and did way, way too much. I came home and was in bed for days. I also didn't take the Vit. D for almost a week. It made a huge difference so I'm back on it. I do take small doses of Vicoden, but it only keeps the pain at a minimum. Im convinced the vitamin D is helping as the pain is better again and my fatigue is improved also. I don't know if anyone else has learned the trick of how NOT to get up in the a.m. so tired, stiff, in so much pain you don't want to move. When I worked (before retirement) I got up at 5:30 a.m. so my body got used to that. I still wake up at 5:30 am. every morning. Now when I wake up I get up but only to take vicoden then go back to bed. So that when I wake up a couple of hours later and get up Im not in pain so I don't feel like I've been run over by a Mac truck. Anyone else tried this little trick and it worked? Learned this totally by accident and have continued doing this.

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Rebecca. I'm glad you have an appointment with a Rheumatologist. We all have similar syimptoms, but unfortunately every drug we take doesn't effect us the same way. In fact, it's been my experience in talking with others who have FM, CFS, Chronic Pain, that we all have acute sensitivities to multiple drugs and doctors get frustrated because drugs that work on some people do not on others. We have to pay attention to our bodies and do what works best for us. I've seen the ad for Lyrica on TV so many times I want to scream; do not listen to what they say! I had a nerve damaged by a surgeon (yep big oops) I was given Lyrica for the nerve pain/damage. In fact, this is what Lyrica was originally developed for and approved for. Someone decided it might help FM, CFS, Chronic Pain and got it approved for FM also. I took it for a week and I became almost psychotic. I could not sit down. I was forced to walk constantly and ended up totally incapacitated from fatigue after walking non stop for days. I told the Dr. it was the Lyrica. No one believed me because no one had ever had this reaction before. I was put in psych hospitals twice. I kept telling them it was the Lyrica but they ignored me. Finally I checked myself out AMA and stopped taking the Lyrica. Within 24 hours my symptoms were gone. I was still totally exhausted and couldn't move myself. Had to be helped for everything. It was a total nightmare. I will never, ever put another Lyrica in my body again. However, if it works for people then I have no problem with them using it. I just think that it doesn't help very many people and wish they would take it off the air. It gives FM people false hope and the drug companies are making a fortune from this new drug. New is the important word here. I don't trust any NEW drugs on the market. This is why my rheumetologist told me to read as much as I could find out, both from places like this site and others and in books, google etc. then decide if I wanted to try savella This is what I'm doing. She says that because I can take
amitriptyline (sp?) without side effects she thinks I'll be ble to take Savella because it's in the same family. I can't remember everything she told me about it because I'm not a pharmacist and not familiar with all the terms. Anyway, this is my take on the subject of which drugs to take and which ones not to take. We are all the same and we are all very different. Sorry for my babble. When I get on a roll I have difficulty stopping. Thanks for your patience and sharing your experiences with me.

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I have been on Savella now for about 6 weeks. I am very pleased with the results. I am definitely in less pain. I get up in the morning and am able to get ready for work and be on time! This never happened before because I moved so slowly in the mornings. I have not had to use my cane since starting on this drug. Yes, there are days when the pain is worse than others but honestly, this drug has helped me more than any other I have tried. It took me about a week to adjust to it but now, I have no side effects at all. I would like to increase the dose to 150 mg a day but my doctor said that the drug rep told him there was no evidence that taking more than 100 mg daily made any difference. I try very hard every day to not allow pain to control my life. I do take Neurontin also but am wanting to taper off this. I appreciate all of your discussions and listen to all your feedback. thank you.

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After a 45 minute visit with my rheumatologist I have decided to give Savella another try. I have to keep a diary to see if the Savella was the cause of my insomnia before. We'll see!

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