Anyone Else Trying Savella For Fibromyalgia? (Page 8)
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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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441

I also have DDD, stenosis, spurs, spondilolisthesis and arthritis..which is basically DDD...and Fibro...Savella has been wonderful for me as I was allergic to Neurontin and Lyrica and unable to tolerate Cymbalta. I have no side affects whatsoever with Savella (50mg 2x daily) and lost over 20lbs since on Savella. I had gained iot while on Lyrica (when they increased the Lyrica dosage, my throat swelled up and I couldn't swallow, my tongue was huge!) I have more energy - and with the mood, I was put on Lexapro, which I take in conjunction with Savella ( 10mg. ) Again, no weight gain, I take the Lexapro at night and it helps with my sleep tremendously. The savella perks me up and I feel so much better than just lexapro alone.

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440

WOW,sooo many horror stories about Savella!! Well,here's another one.I have been on soooo many meds since a botched ankle surgery in 1995.I was diagnosed with RSD/CRPS at the end of 1995 and STRUGGLE every single day 24/7.Have been on every pain med known to man,I think,and then last year the pain clinic I go to added Savella to my pill collection.Well,side effects?? I had every single one listed on the pill information website.Slurred speech,stuttering,no motor skill control,peepee in pants,uncontrolled bowels,drulling,fainting,sitting-just staring totally blank into space-eyes wide open,but couldn't say anything.I lost all control of my entire body.There were several other side effects,but I was so out of it,I don't really remember,I just remember being so embarassed when ANYONE saw me.I had been on the meds for about 2 weeks and then it took me about 10 days to slowing go off of it.You CANNOT JUST stop this med.You must go soooo slowly to get off of it.Now almost 9 months after I stopped taking it,I'm still having daily seizures,but it hasn't been determined if the seizures are from the savella or multiple head traumas that I had had in the year prior to the start of savella!!! This,of course,is what happened to me,after reading these different comments,wow,lots&lots of different experiences.This is just me....I wish you luck

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439

I have been taking glucosomine/chondroitin for 10 years. 3 other factors you must know are your vitamin D and B12 blood levels, and if you have an H Pylori infection. Any one or more of these 3 factors and you are flirting with death long term. Sadly there are very few doctors and specialists who test for these, even though the tests are cheap. Do these tests first regardless of what your doctor or specialist wants to do. If you are not familiar with these, you need to spend some evenings Googling them and their ramifications...

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438

I have been taking my half dose nearly a month now but about two weeks into it I started to notice some pain back in my arms, nothing close to how bad it was before Savella so I decided to stick it out. Almost two weeks ago I started to drink a Glucosomine Chondroitin drink every morning called Supple. I figured what could it hurt and a good friend of mine with arthritis swears by it. I had taken pill form in the past and never noticed a difference but I swear it is working. The small twinges of pain I was starting to feel are gone. I go to my Dr. next week and I am going to let him in on what I have been doing and I hope to get his blessing to discontinue the Savella and see what effect just this drink will have on my elbow joints. It will not take me long to figure it out, my body lets me know fairly quickly when its in distress. If the juice alone does not work then I will go back on the Savella at half dose since this seems to be working with the addition of the Supple but I really hope i can get off Savella totally. I have noticed a huge difference with the flushing at the lower dosage which is a plus for me if I have to continue on it. I am a 100% advocate for Savella, it literallly was a miracle drug for me, just wish that everytime you put a chemical in your body that does so much good that it did not have so many side effects. I'll keep you posted with my progress.

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437

I have had just the opposite side effect---diminished libido--actually, NO libido on Savella. I have not had yellow eyes, kidney problems, or tingly tongue. I do have hot flashes pretty bad, even worse than I would for just being in menopause. I don't get migraines from it, although until I entered menopause I did have migraines from my teenage years on. I have noticed that it intensifies the effects of other drugs. For example: I used to take Lortab for my IBS. Once on Savella, I tried to take Lortab and I could not function at all until the Lortab wore off--it made me SO sick to my stomach. I tried to take Zofran (for nausea) and it gave me a Migraine to end all Migraines! I basically don't take anything else while on Savella except for my Thyroid meds. Just thought you might be interested in my different experience. I am still on 50 mg, and I am thankful every day for Savella. It gave me back some functionality--and that is worth a LOT!

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436

Interesting side effects Miguel since we have mostly heard from women and its nice to hear about it in men. I was not aware of kidney side effects, nor do i have yellowing of skin and eyes. Two of the recent side effects I get from its use are increased thirst, dry mouth, and an odd burning tingling on the tip of my tongue. Perhaps the increased thirst is related to the kidney pain?? or vice versa?? I also get a face flush at odd times which is not really bothersome at all.

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435

Hi. I will share my Savella story. First, Milnacipran is not new. It has been around earlier than 2005 in studies and if you follow these threads you can tell how long it has been injected into the mass market. Side effects can be severe and it WILL be a little different for everyone. I take it, but experience: the yellowing of the eyes (you may not notice, but your family will) and the bruising below my eyes around the cheeks (I'm 47 and have good skin pigment), probably the most difficult, kidney pain (yes kidneys, because the body is naturally trying to expel the drug). The only other mentionable effects I experience are migraines at full dose (Ouch) and insomnia. Sweats, chills, flush, tingling and kidney pain (you will notice this as lower back pain) etc. will ALL subside as long as you stay on the drug. The kidney pain was the first to return upon detox (backing to 25mg in MY case). At FULL dose, I like many others experience migraines (ouch, very ouch) it is not worth turning the lights off all day and turning off all audio visuals (no quality of life). Dialing back the drug to 25mg seems to do the trick. I think a 35mg pill would be awesome (you can’t create a 35mg tab from cutting your own). As mentioned, your overall symptoms WILL vary. The balance for your system is delicate. YOU know best. IF you have high BP like me, PLEASE do not stop taking you BP meds. Two things I noticed. BP WILL go up as well as LIBIDO. High BP is also a side effect of VIAGRA (Libido). Do NOT continue the drug if YOU feel weird (your body is telling you something). I do not think it is fair for people to spook others about the drug, so I will just say the drug has had some very serious side effects in studies. If you feel weird (light headed for longer than a moment etc.), then DIAL it back. I hope my experience can be a fraction of help. Best of luck!

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434

I posted on 11/27/11 questioning whether or not Savella was any good. I was on it till right after Christmas, then finally got into see a rheumatologist. I guess she caught me on a bad day, so she changed me from Savella to Effexor, added Naprosyn and Baclofen. She also told me to stop taking so much Oxycontin - take 2 15mg pills a day instead of 4.Within 10 days I couldn't stay awake more than a couple of hours, and began having intense restless leg syndrome that was so bad I was pounding the bed with my fists and crying. The next day I went back to my original provider who wasn't real nice about her changing so much of my meds. He put me back on the Savella and added Ropinerol for the leg spasms and somehow this particular combination - Savella, Naprosyn, Baclofen, Ropinerole, and my 4 oxys is working.

I am now working a part-time job as an art instructor and my boss is great about giving me the opportunity to stop and take a break if I need it. The first day was tough - I came home, laid down for a nap and 7 pm and slept through the night, fully clothed. But each day gets a little easier as I learn to pace myself. Last night I sat up with my daughter and watched TV till almost midnight.

So, as far as the Savella goes, I'm sold on it. It just took a little work to get everything together.

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433

IndyCarol, I have been taking 10,000 per day for two years and my vitamin D blood level has gone from 27 (low) to 47 (still below where I want to be). It seems to be helping.

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432

I am surprised to see someone who has lasted as long as I have on savella. I too lived with the constipation and insomnia because they were things I had before Savella. I never have really had any problem with upset stomach but I do sweat like crazy. My whole life though I have always felt that i had a furnace inside me so it has definitely increased that, especially during the summer months. Probably since we started hitting colder monthes I have started to notice that I get easily flushed when over heated or even when drinking something hot. It is specifically my nose and I have become so self concious about it that I have started carrying make-up with green undertones to try to hide it. I work for a catering company and the flushing is not attractive. Also I have started to be in a stupor in the mornings, can barely force myself out of bed, this happened to me last winter also. I have always been an early riser and very energetic so this was something I decided I needed to nip in the bud. Last week I started to cut my pills in half, taking 25 mg. in the am and the same at night, and it seems to be helping with the flushing. So far the pain in my elbows has not returned, so I'm hoping this dose will keep it at a manageable level along with the valium I take. My doctor is good at working with me so if the pain becomes unbearable again I will have to go back to the 100 mg. a day and possibly try a medication for rosacea on my nose. Ignoring that symptom can lead to bigger issues, so that would be one more medication added to my arsenal. All this said, Savella truly saved my life as I could not make a movement with either arm without intense pain. There is no other medication for fibro that I am willing to try. Cymbalta and Lyrica sound like drugs from hell. I will keep you posted, but would really like to know if anyone else has this issue too.

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431

Thanks- but I take 50,000 units of Vitamin D in a weekly pill form-- and it is a preventative I suppose.

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430

anybody with fibromyalgia getting regular 25-hydroxyl vitamin D blood tests? Severe vitamin D deficiency has the same symptoms as fibromyalgia. Google it if you are not aware. You may be surprised. 62% of Americans were found deficient in the recent Utah study.

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429

You are having a lot of oxidative stress with all the meds you take and the latest episodes of being in a car accident-- I will suggest doing some research on protandim and then going to their website to buy some-- it will help decrease the injury to your body through the stress you are having as well as well as help with your pain issues related to your other issues. Really, I use it and it helps greatly.

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428

Hi Veronica. I can late to your comments about getting people to realize that something is wrong with you when you look normal. I have been on Savella for 1year and. 7 months. I would be flat in bed without it. I am 54 and have had Fibro for 31/2 years. I actually think it was caused by my doctor putting me on Crestor for high cholesterol. Anyway, I deal with all the side effects because they are at least tolerable. I always dress in layers so I can get cool fast if I need to, and I realize I will sweat like a pig when I work out. I keep a little something in my stomach at all times for the nausea, and I take my pill in the morning after I work out otherwise my heart beats too fast. I wish I didn't have to take this drug, but since I have fibromyalgia, and it doesn't seem to be going away, I'm thankful to have it to make me more functional again.

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427

Is it possible that you might be bi-polar? If you have another problem like that going on it will be much harder for a doctor to find the right combination of meds for you.

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426

I have also been on Savella for a year and seven months. At first the side effects were so bad I thought I would have to stop. I tried to go off of it after taking it for 2 months, and the pain and fatigue were so bad, I just had to go back on. It has literally given me my life back. I deal with the side effects as best I can. I never take the morning or evening dose on an empty stomach. That helps with the nausea, which has gotten better over time. I take my morning pill after I work out because it makes my heart beat too fast. I deal with the hot flashes as a necessary evil, and when I work out I sweat way more than everyone else. But, it is worth it to me. I also started taking Protandim like another person posted on January 15. This has
Also helped me. I have so much more energy, and as a result, my husband has also started to take it.

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425

I have been on Savella for about 8 months. When I have gone off of it to try to determine if it is working or not, I quickly return to a bad state of pain, having trouble standing up, running out of energy, having much brain fog-- then when i go back it clears up withing 2 weeks-- does it help everything? No- but it does relieve the symptoms greatly and i no longer feel as unwell. As to stomach distress, i take one in the morning with my breakfast and one at night when i go to bed-- minimal stomach distress in the beginning-- after 8 months now, nothing. Each person is different, you have to listen to your body and decide for yourself. Right now I am also taking a nutritional supplement called protandim and it is helping to reduce the oxidative stress in my body that cause pain and autoimmune problems. I have been on it for 2 weeks and notice a big difference.

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424

Get off it! The symptons only get worse. I was on it for over three months and the side effects never lessened. The stomach pains were akin to when I had ulcees the overall body sweating got to be about every half hour then the foot cramps started. No more for me! I recently started, 5 days ago, very low dosage and slow buildup to maximum over 60 days on Gabapentin. Can't really say how this will play out so far the pain has not lessend but I finally sleep better. Good luck finding something that works for you.

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423

I was on Savella for a year and experienced many of the same side effects as many of you. I got off Savella in 4 months after trying a Natural Doctors plan....it works and I am free of any medication. I would share any of my experience with anyone wanting to get their life back!!!

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422

I also started a couple weeks ago, and my doctor said the stomach upset is VERY common; she put me on a four week titration instead of a two week for that reason.

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