Anyone Else Trying Savella For Fibromyalgia? (Page 3)

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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Teresa, I would really like to thank you for starting this thread also. I've been tossed into a whole new world and have absolutely no one around who understands what I'm going thru. This board has really helped me.

I took my 2 week titration pack of Savella and posted my results. I made the decision not to continue treatment because of the benefits vs. the side effects. Two (2) days after discontinuing the Savella I had the absolute BEST sleep of my life. But, and this is a huge BUT, my pain has been thru the roof. I've spent the last 5 days in bed - housework be damned! My husband also notices a change in my mood. Whether this is from the pain or the meds I don't know. But he's commented that he noticed while I was taking the Savella I seemed to be in a calmer state. There may have been other benefits that I didn't notice while on Savella that I'm noticing now.

I have an appointment with my rheumatologist tomorrow. I don't know what other avenues we have to explore. Honestly, I am tired of being a guinea pig. My mind tells me to get back on the Savella, if there is something else I can take with it to combat the insomnia that I was evidently experiencing. But my sensibility tells me Savella is not the answer. What to do! What to do! I hate being in this amount of pain. Natural childbirth was less painful than this. The thought of being bound to this bed and not finding any pain relief has me dismayed.

Sorry for venting but I am truly frustrated.

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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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My Doctor put me on neurontin for the neuropathy, and I had migraines, but the neurontin gave me some unpleasant side effects, and the savella seems to handle most of my issues, along with trigger point injections and physical therapy, I continue to make progress. I am not willing to change anything - most of all the savella because I believe it is the most beneficial to me.

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Thank to all of you who are posting on this thread.... I am 34yo and have had severe pain since my teens but never thought it could be anything more than being overweight and hard on my joints. 8 years ago I had gastric bypass surgery and have kept off the 160 pounds I lost but about two years ago I was completely drained and finally went to the doctor.

After numerous blood tests, I was found to be severely anemic, no vit. d, and quite a variety of other issues going on. I was immediately infused with 2 units of blood and within 6 months had iron infusion therapy and still was not feeling better. Fatigue and all over exhaustion was a huge problem and I didn't want to do anything.

My doctors finally discussed the idea that I might be suffering from something completely outside of my gastric bypass issues and depleted minerals in my blood and it was determined that fibromyalgia was the culprit.

I have taken all sorts of prescription drugs to deal with the pain but noticed that the morning after, it all came back10x worse. I had another dr. appt. today and she recommended Sevella and I am ready to begin the 2 week pak tonight. I am hoping for some relief and know that there will be some struggles along the way but, I am looking forward to getting my life back. I have done my best to keep moving and try not to slow down but some days are certainly easier than others but those are few and far between.

The progress of others and the information shared on this thread is tremendously helpful and provide hope that someday soon, I too, will find relief from Fibromyalgia with Sevella.

Good luck to you all and best wishes for a healthy 2010.

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Rebecca-- congrats for trying the Savella again.I do hope you get through the side effects and begin to feel relief.
Alex--some people have allergic reactions to medication, such as me & penicillin, Sorry the Savella didn't work for you. Lori-- i'm glad you're stopping nuerontin. I went into complete kidney failure. It can be a very dangerous drug. Everyone-- try to laugh as much as possible and remember the joy in life. Don't dwell on your pain--don't let it take over!

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Well! I just got a call from my primary doctor. I tested positive for Mono. Monday I go for more bloodwork to see what stage I'm in. This may explain the fatigue but certainly not the pain.

Oh the trials and tribulations!

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good grief!! If it aint one thing... Here I sit with my iron i.v. I cannot wait to see how much this will help, or what changes to expect. Mono? eeeww.. sorry for you and hope you feel better. Good luck to all of you who are new and just trying savella. Don't get discouraged

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I haven't read nor posted on this site during the last week because it was my week to volunteer as a tutor in an after school program. I love doing this for these beautiful little children. I agree that laughter is something that we all need to keep in our lives. It's helpful to keep us positive and it directly helps because it makes the brain release endorphins that help with pain etc. My passion for most of my life has been dancing. Not much opportunity as I've aged, but never pass up an opportunity. During the last month my husband of 41 years and I have been to two fantastic dance parties. Yahoo! Of course each time I went I knew I would pay for it the next day, and I did, but I must do some things in life I enjoy or go nuts. Sitting here feeling the pain, fatigue etc. and doing nothing only makes it all worse. I can't even imagine trying to work now. I applaud all of you who still work and manage all your symptoms. I know many who have given up their jobs because of FM. Thank you all for continuing this dialogue. It's helpful for me as I'm in the process of making the decission as to whether I'll take Savella or not. Incidentially, Neurontin (sp?) is in the same class of drugs as Lyrica so I'm not at all inclined to try it. If you read my last epistle you'll understand why. I'm going to be a Grandmother again! I only have one, so I'm excited right now. Age has a few advantages and grandchildren are one of them. I could keep on writing about my symptoms or no symptoms, but will spare you the time now. Thanks again and keep on keepin on. We all need each other. If you've been following these posts you've probably figured out why my name is Long Play!! Hee Hee

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I am taking Savella for neuropathy. I have been in pain for years. have used methodone (terrible stuff) morphine neurontin lyrica and still in pain. Pray this works.

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I just started taking Savella (day 2 of titration pack) and have also had the excessive yawning another person posted about. I also had this in reaction to Paxil, which I tried to take in the past (SSRI) for anxiety. Savella is giving me a runny nose, slightly upset stomach, and the excessive yawning beginning one hour after taking it and continuing for about an hour. Does this go away after taking the medicine for a while? I can deal with the mild upset stomach... goodness knows, the IBS has put me through worse... but I can't put up with the yawning! I am a therapist... can you imagine going in to see your therapist and having her yawn at you for the whole hour? LOL... I guess you have to laugh at yourself sometimes!

I am also wondering if anyone has had relief staying at the 25 int he morning and 25 in the evening dose.

thanks!
Melanie

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.I do not want eat as much, sleeping better, eating less, and have fewer of the fibermyalgis
pains. HURRAY. Hope everyone, gives it a second chance. Hugs to all..Lynda

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Hey, congratulations to Linda! And everyone who is benefiting, finding the right thing for you. I am happy with having titrated up to 100mg., I knew 25 mg. wasn't enough for me, and I know if I get too much, I will have the negative aspects of too much anti depressant effect of the savella. I am also on wellbutrin so the two combined.. I know my moods well enough, and have feedback from my family regarding my mood. I don't know if 25mg is enough for you, but ask your Dr., you may find to increase the dose will help you even more, as is was the case with me. Now, a question for all the fibro. patients in the room: My fibromyalgia started in October (13 months ago), but the real big flare up of symptoms which made fibro obvious was immediately following my hysterectomy/appendectomy and bladder repair. Too much physical trauma to the body I guess is the excuse. Anyway, 3 days after that surgery, I was put back into hospital with high fever - tests indicated urinary tract infection, but only a very minimal amount of bacteria. I've had several bacterial infections since then, all of them really whoopping my butt, yet the amount of bacteria is very minimal. Does anybody else have this happen? Love to hear any/all responses, I know I'm not a freak... if I knew that it was all in the course of the normal business of fibro, I would actually be mentally content. Right now, another infection (sinus-and I feel a UTI coming on) it would be nice to know it was caused by fibro.. otherwise, what would cause the itty bitty amount of bacteria to act as if I have a severe infection. Any ideas? Going back for more iron infusion on Thursday. I felt good after last weeks 500mg., and a day later felt sick sick sick. seeya all, thanks.

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lori--i've had chronic uti's all my life. my dr. told me me that uti symptoms are very common in fibro's it goes along with the lower immune system. any thing that we get is more intense than without fibro...an example would be a simple hangnail in a normal person is tolerated but can be excruciating for a fibro....make sense? so a little bacteria can be like a thousand fold with fibromyalgia. forgive my typing...still suffering from a broken shoulder thanks to the billions of symptoms of fibromyalgia.

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Lori, I have noticed exaggerated symptoms of simple things too. In reading other's responses, it does seem to correlate with the FM. UGH! Just one more thing to add to this lovely condition.

I saw my primary doc the other day concerning my Mono. Believe it or not, this is an initial case, not something I've harbored over the years. Again, UGH! She said I must have lead a very sheltered life to never develop the antibodies to this. Anywho, we went over everything! She is very dismayed that my rheum doc put me on Savella and the fact that I agreed to retry it. With it being a relatively new drug she says there isn't enough known about it yet to be a guinea pig. She wants me to pay close attention to anything out of the norm. Well, at this point, everything is out of the norm. But in her readings on Savella she says it has a tendency to suppress your immune system. I'm already in a compromised position so she is concerned. She is sending me for more blood work (13 seperate panels).

So far, this second round of Savella seems to be going better than the first. I am actually seeing some pain relief. Not as much as I would like to but at least I am not in severe pain. I guess something is better than nothing. We'll see!

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Rebecca, the rheumatologist is the one who should have the most knowledge about this drug. Savella should only be prescribed by a neurologist or rheumatologist, just as a psychiatrist should be the one to prescribe meds for depression, or schizophrenia. I am an RN and I work in the field. Believe me, the drug reps give the most detailed info to the specialists and I woul be more likely to follow what your rheumatologist tells you about his medication. I'm not saying to be alert to any changes, but I am saying that he is the expert. Good luck! I am really doing well on Savella. I'm not pain free but I have not needed my cane to ambulate since I started taking it.

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