Milnacipran (brand names: Savella, Ixel) is the third and last drug the FDA approved for the treatment of fibromyalgia in the United States. The fourth serotonin–norepinephrine reuptake inhibitor (SNRI), to be introduced in the U.S., Savella stops the reuptake of serotonin and norepinephrine in the nerves synapses – making more of those neurotransmitters available to the central nervous system. Savella is the most “balanced” SNRI in that it increases serotonin and norepinephrine equally. Unlike other SNRI’s it does not affect dopamine levels.
Antidepressants are now commonly used to treat chronic pain…
SNRI’s are usually considered antidepressants (although they are also often used to treat anxiety, obsessive compulsive disorder and ADHD) but two SNRI’s, Savella and Cymbalta (Duloexetine) have also been shown to be effective in treating chronic pain in some patients without mood disorders.
Several kinds of antidepressants (including TCA’s), in fact, are now commonly used to treat many kinds of pain including arthritis, central pain syndrome, fibromyalgia, low back pain, migraines, nerve damage from diabetes (diabetic neuropathy), and nerve damage from shingles (postherpetic neuralgia). Lower doses than used in depression are usually sufficient.
Pain Modulation
Different nerve pathways in the central nervous system can promote or inhibit pain. Reduced activity of the pain inhibition circuits appears to be the major problem in FM. The pain reducing circuits originating in the brainstem are loaded with neurons that respond to serotonin and norepinephrine. By increasing serotonin or norepinephrine levels, antidepressants may be reinvigorating the pain inhibiting circuits in the brainstem – thus lowering pain levels.
Antidepressants may also block receptors (histamine, NMDA, a-adrenergic) involved in pain processing, effect ion channel activity, (weakly) stimulate opioid receptors and may even affect immune regulation. Some recent animal model evidence suggests that Savella and similar drugs may enhance the effectiveness of microglial inhibitors such as minocycline.
It’s possible, even likely, that nerve pain and depression have an overlapping pathophysiology. Similar neurotransmitters, HPA axis, autonomic nervous system and immune alterations can be found in each.
The Savella Fibromyalgia Story
Savella has been the least of the big three drugs for FM. Cymbalta has been FDA approved for six conditions in the U.S., Lyrica for four and Savella for only one. Cymbalta is expected to challenge Lyrica for the top FM drug in sales, with Savella far, far behind.
Savella’s approval record is rather mixed, as well. Savella is FDA approved for treating fibromyalgia but not depression. Rather confusingly, it is not approved for fibromyalgia in Europe but is widely used for depression. It is approved for treating FM in Australia.
One of the advantages of getting FDA approval for a drug is that the drug tends to get more study. Since 2009, Savella has sparked numerous studies, with increasing studies in the last couple of years.
A 2010 review indicated that Savella can be effective in managing pain and improving fatigue and cognitive dysfunction as well as depression.
Side effects were limiting, however, with almost 25% of patients dropping out of clinical trials because of them. (Twelve percent of patients taking the placebo dropped out.)
One milnacipran review noted that most side effects vanish after a week or two and that slowly uptitrating the drug helps. The doctors recommended starting with 12.5 mg once daily in the morning for one week, then increasing to 25 mg once daily in the morning for 2 weeks, and then 50 mg once daily in the morning. In some patients they may add a evening dose.
Because milnacipran is the only FDA approved FM treatment shown to improve symptoms of fatigue and cognitive dysfunction in phase 3 clinical trials, they recommended using it in patients with brain-fog problems. They also noted that “many patients who have previously failed to respond to either of the other two indicated medications can have an excellent therapeutic response to milnacipran.”
A 2012 Cochrane Review, however, was not quite as enthusiastic. It stated that the drug does provide moderate pain relief (30% reduction) in about 40% of patients, but that placebo provided about a similar reduction to about 30% of patients. (The placebo response rate in chronic pain tends to be high. A later analysis found that almost 20% of FM patients on placebo in 18 studies experienced a 50% in reduction in pain.) In contrast to placebo, though, studies indicate that milnacipran (or Savella or Ibex) does appear to maintain its effectiveness long term.
Could Savella work for you? Read the last paragraph of this blog to find out.
A 2012 study found that the presence or absence of depression had little effect on milnacipran’s effectiveness in FM; i.e., the drug was effective or not independent of whether a patient was suffering from depression. Milnacipran was also associated with some weight loss (in a rather overweight FM population) over two years of treatment.
A long term analysis of 3,000 FM patients over 11 years, however, found that the FDA approved drugs for FM provided little extra benefit compared to past treatments (NSAID’s and opioids). Interestingly, as the FDA drugs came on line, opioid use in FM continued to increase; almost 50% of FM patients were using mild to strong opioids (mostly mild) by the end of the study. As the use of tricyclic antidepressants such as amitriptyline dropped (27-15%), the proportion of patients who were using Lyrica or the FDA approved antidepressants by the end of the study rose dramatically (about 40%). The new drugs increased costs for the patients, but study found that the clinical benefits of the new drugs were limited with 2-5% reductions in pain and no increases in functionality.
A large three-year study, however, found that 70% of FM patients on milnacipran reported themselves “”much improved” or “very much improved”.
Meanwhile a quite small study found no significant differences in pain reduction or cognitive improvement between milnacipran and placebo. The home of the NIH institute for FM, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) got into the act by funding a CBT/milnacipran study that found “moderate benefits” to combining the two therapies.
Doctors had earlier reported that milnacipran was often effective in some FM patients who didn’t do well on other FM drugs. That report was largely borne out in a 2013 study that found that 33% of patients who did not respond to duloxetine (Cymbalta) were classified as responders to Savella.
By 2013 the drug industry was clearly tiring of meta-analyses finding rather low clinical benefits to their drugs. Researchers associated with major drug companies penned a review suggesting that these analyses “do not always tell the full story” and that some benefits had been missed.
A large 2013 study continued the push-back from the drug industry. A large study lead by an Eli Lily researcher found that patients using FDA approved drugs or tricyclic antidepressants reported “satisfaction with overall treatment and their fibromyalgia medication (46.0% and 42.8%, respectively)”. They also reported “modest improvements” and high rates of medication use.
Attempts to broaden the reach of milnacipran ensued. It proved to be helpful in reducing the frequency of migraine and headache, two common issues in FM, in a 2014 study. A 2014 analysis of three studies found that milnacipran did indeed improve fatigue significantly (30% reduction in fatigue) in about 15-20% of patients. A meta-analysis, however, suggested Savella was no better than placebo at reducing neuropathic pain.
Finally, the first pediatric study of milnacipran in FM had mixed results. The trial – co-authored by Lucinda Bateman – suggested the drug may improve symptoms of FM in kids at about the same rate as it does in adults, but the authors had so much difficulty enrolling pediatric patients that the trial was halted early.
Targeting Patients That Benefit – the Next Step
People with FM have had mixed results on Savella. That’s true for all FDA approved drugs for FM (and probably for all the recommended treatments for it). Lyrica, in particular, has a bad reputation for side effects – including the dreaded weight gain. (For Savella nausea seems to be the biggest problem.)
Data mining efforts like those listed in this study may clear up some of the mystery regarding which drugs work for who…
Realizing they have a PR problem, drug companies are trying to fine-tune who they are giving their drugs to. A recent study “Is the efficacy of Milnacipran predictable?” may be a harbinger of what’s to come. An analysis of three large trials revealed that one subset of FM patient benefited the most from Savella. It found that FM patients with
- high pain intensity
- low anxiety or catastrophizing
- absence of major sleeping problems’
- and significant physical limitations in the daily life
did best. It suggested that if you have significant levels of anxiety (or catastrophizing), relatively low levels of pain and major sleeping issues you’re probably not going to benefit much from Savella. On the other hand, if you can get your anxiety and sleep under control – you might.
There are no magic bullets for FM but a 30-40% reduction in pain is nothing to sneeze at. People with fibromyalgia trying Savella might want to do two things
- consider whether you fit the above group
- if you don’t, take steps to alleviate any of the above factors that might keep you from benefiting from Savella
- use the very slow ramp up period suggested by the doctors (see above)
Have you tried Savella? Tell us how it went here.
I didn’t do well on it, nor Cymbalta which I was on way too long.
I have high pain, high anxiety, very bad sleep problems, significant physical limitations. But I think often when you are a Fibro AND ME/CFS patient, your symptoms are not going to be helped with a Fibro drug.
You definitely didn’t fit the profile. That’s a good question though – if you have both would you be helped by an FM drug?
Perhaps others can chime in…
I’ve been on both Lyrica and Cymbalta and neither one helped at all. In 2012, I was given Savella and it has helped a great deal until early July this year, when I had a two day stay in the hospital and had to have 2units of blood. About 4-5 days after I got out of the hospital, this terrible flare started and is not being helped by ANYthing…not even 30 mg of Oxycodone a day. My sister thinks this flare has something to do with the blood transfusion, since it was the only thing that was significantly different about my daily life. Who knows? I just know I’m in so much pain that I’m nauseous. I’m miserable.
so sorry you’re going through this, jan!
Hang in there Jan….I hope you get out of it soon!
Nausea is a common symptom of Savella..I wonder if you should drop your dose a bit and then go back up?
Good luck!
Jan:
I agree with your sister, that the blood transfusion, in fact the whole trauma of hospitalization, what lead you to it and the blood transfusion is more than enough to put a person with FM into a flare.
It’s been since early July, so about 2 months. I hope you are simply resting and sleeping as much as you can.
It’s so difficult, depending on your symptoms, to just rest. Sometimes the pain is so bad that your bedding hurts. I am hoping this flare will subside for you soon and that you’ll start feeling better and the Savella can once again relieve a good deal of your pain.
Lorraine
i have that problem with my mattress. it’s painful for me to sleep on. i’d like to shop for a new one, but that is difficult. does anyone know if there is an old thread about mattresses, or should i start a new one. thanks.
-dee
Same here. Ive tried everything possible to try to make my bed work comfortable for me no luck. Same with pillows. Ihave tried so many n nothing.
Stay tuned for a blog on sleep…
Have you tried an air-bed with a foam topper (about 2″ topper). It gives more spinal support than memory foam mattresses, which are the most comfortable initially but can lead to increased spinal pain and spasm as they ‘dip’.
(I have tried every kind of mattress over the years – at great expense – but am now sleeping better, with less discomfort.)
thanks for your input. i finally purchased a memory foam mattress that is being delivered today. will keep your advice in mind if we have a problem with it.
-dee
Have you been tested for Lyme? Neighbor feels contracted Lyme & another bacterial infection from 2 pints blood received.
I seem to fit the profile of patients who may do well with Savela. Too bad it’s not approved in Canada!
Wouldn’t you know it?
I did awesome on it. It got me to a much better place in life over 5 years ago. It took me some tweaking meds and alternative therapies to get where I am today, but without Savella, I probably wouldn’t be here today to still be fighting for a cure.
I’m so happy it’s helped you so much Gidget!
Are you saying it worked or not? I am confused
Hmmm…I am about to meet with my PCM to discuss switching from Gabapentin to Topiramate. I have been on Gabapentin for seven years. It has been pretty effective for my neurological pain. I would say in the beginning 90%. In the last year or so that is reducing and one of the side effects of Gabapentin is sleepiness. I read about Topiramate on this website and thought I would give it a try; but, now I am thinking I should try Savella as I do fit the right criteria. Looking forward to what others have to say.
I took Topamax…not sure if is the same exact drug you mention…but I suffered permanent kidney damage after about 6 years on it. Went into Stage 4 renal disease. My best advise to you is to demand your doc monitor both your liver and renal function every 6 mos. while taking ANY of these drugs. Good luck and God bless.
Topiramate is the generic name for Topamax. I’ve been on it for 11 yrs. I haven’t suffered kidney damage that I’m aware of, but I do have over active bladder. I drink at least the recommended 2L of water/fluids every day and always have, however. I was warned by my doctor that this medication prevents one from sweating adequately and therefore to be careful of becoming over-heated.
Tina Smith, I cannot imagine why your PCM would consider Topamax/Topiramate a replacement for Gabapentin, or even a treatment for fibromyalgia. For one thing, it doesn’t relieve pain at all. I’ve been on both and they are both anti-convulsants with similar side effects, including blurred vision. In fact, for a time, I was on both simultaneously, as they were prescribed by two different doctors for two different things.
I’m not on Topiramate for FM. In my experience, if you take more than 200 mg per day, you will experience severe muscle pain on it. You will also experience excessive sleepiness with it on individual doses of 75 mg or higher, depending on how it affects you personally. Initially, I began to experience weight loss on as little as 125 mg per day, but as I advanced through peri menopause and into menopause, I found that it took higher doses for that weight loss to occur and it was slower. I would never recommend exceeding 200 mg per day. My doctor suddenly increased my dose from 250 to 375 mg per day in 2008. The result was awful. I had already experienced bad muscle pain and excessive sleepiness that was interfering with my performance at work at 250 mg (at first, I didn’t know this was the med, I thought it was stress), but the sudden dosage increase made things far worse and in 10 days, I dropped so much weight, I became emaciated and my D-cup breasts became empty flaps of skin almost overnight! I had to back off the dose and my appetite, which was barely existent, suddenly became ravenous! So make sure your dosage changes are very gradual, like 25-50 mg no more often than 2-3 months. I also found that it made me very irritable at higher doses. This is a drug that can seem very innocuous at lower doses and becomes disturbingly powerful at higher doses. The weight loss may seem an attractive side effect, but you can pay for it with negative side effects. Sadly, I found it impossible to control my weight during a few months I was off of it, which was part of the motivation for going back on it again. Now I feel kind of trapped on it.
These are things I learned from experience on Topiramate. Neither my doctor, pharmacist, nor anything I looked up online warned me about any of this. Good luck.
Bri, thanks for your input. I am the one who made the suggestion to my doctor as I find that after seven years the Gabapentin is not as effective as it used to be. I got the idea of the Topamax from the Health Rising website. The title of the article is “Move over Lyrica and Cymbalta? Could Topamax (Topiramate) Be More Effective in Fibromyalgia? ” The link is http://www.cortjohnson.org/blog/2013/09/14/move-lyrica-cymbalta-topamax-topiramate-more-effective-fibromyalgia/ .
My daughter, who is now 13, took Topamax for 18 months between the ages of 11 and 12 for migraines which run in my family. She took 25mg twice a day and she did not have any side effects. She was taking the lowest dose possible and it was very effective. The article cites very low doses similar to what my daughter took and nowhere near the doses you mention.
I am not diagnosed with FM and have never really considered myself as having FM but I do experience neurological pain. Pins and needles and burning and pinching and biting. These are words I would use to describe my pain. Mainly in my extremities and the cap of my brain. the Gabpentin has been very effective at blocking this pain and the only side effect I ever had was sleepiness, which when you have CFS is the last thing you want, but I couldn’t stand the pain.
Thank you for relaying your experience, especially the part about weight loss. I am very small, 95 lbs and this is a good weight for me. At one time, at the beginning of my illness I was at 85 lbs for a couple of years.
I am concerned but it seems that no matter what drug I consider switching to people talk of negative side effects. I have been sitting on the fence for over six months about what to do. Man this is hard.
I also I damaged to my kidney from taking it. I ended up getting kidney stones also. In the end I lost 1 of my kidneys
i have diagnosed with both fibro and CFS. neither, cymbalta or lyrica helped me.
thanks for posting this article. i had not heard of it before.
Cymbalta and Lyrica both made me feel worse. Lyrica destroyed my thyroid. I’m trying out Savella now and it’s making me really nauseated, and I feel like it’s making my pain worse. This is the final FM med I can try. I’m also on gabapentin.
Are you still taking the Savella? I have read it can cause severe permanent hair loss. Have you had any hair loss while taking Savella? I am not sure how common it is and I don’t think the pharmaceutical company lists it as a side effect.
A warning. If you take an MAOI antidepressant, Savella might be dangerous as together they might cause serotonin toxicity, so perhaps come off the MAOI slowly, allow a washout of ? weeks then start Savella
Thanks Fred for passing that on.
Yes, Fred and Cort, the combo of the two must cause something that is potentially dangerous as the docs had miscommunicated and not told me to completely d/c the 60mg Cymbalta when they put me on Savella and I had what amounted to a psychotic break although thankfully a very brief one. I can’t attribute it to anything other than the combo of the two meds so be sure that you’re only on the Savella or ask your MD what’s up. I didn’t, to my knowledge, have the high fever that comes with the serotonin toxicity but nonetheless had some sort of reaction that I wouldn’t care to repeat. Also of interest is how these meds can cause weight loss. I know when I was taking the combination, I came down to my lowest weight ever and my friends said I looked unhealthy and gaunt (just when I thought I was getting the super-model look. Ha!) I read where another person wrote that they went from 95 to 85 lbs. That’s a wisp of a woman at 95 so to drop 10 more… likely not healthy. marcie myers
I would love to hear from people who have FM and CFS/ME. I just started nortriptaline 10mg but I’m having major side effects even at that low dose. It helps me sleep which is awesome, but I pay for it with worsening fatigue, dizziness, heavy limbs, brain fog. The fact that this helps brain fog and energy seems like it could be a good option for FM/CFS/ME
I started 10-20 mg Baclofen & it has done wonders for my sleep. I get to sleep faster, stay asleep & feel better upon waking. Might be worth a try if the Nortriptaline doesn’t work out. Baclofen is not a “sleep med” but improves sleep in some people & energy in others.
I think it’s a muscle relaxant (Baclofen) as I use it for muscle spasms and it works great! Does make me dopey, which helps me get to sleep if I need it at night. Doesn’t keep me asleep, definitely makes my brain fog worse, and hasn’t helped fatigue.
Baclofen is a muscle relaxant for spastic conditions. I was on it for years until I stopped taking it recently. It never did anything for me. It never made me sleepy, it never relieved my pain even a little. I took it for over seven years just because my doctor prescribed it and when I found out that it wasn’t actually suited for fibromyalgia, I stopped taking it. It made no difference when I discontinued it.
Cort (I believe) just had an article about low-dose trazadone, a tricyclic like nortriptyline formerly known as Elavil. Super low doses of trazadone had been found to help with our sleep cycle issues and not leave the person all fogged up in the am, any more than the usual I should say. I’m trying it currently, taking 1/4 of a 25mg tablet. Doesn’t knock me out but I do seem to feel like I’ve slept somewhat. Had severe sleep apnea years ago that my pulmonologist told me is now resolved which I seriously doubt but that’s another issue. marcie myers
I’ve been using trazadone for at least 15 yrs for sleep (I only use the baclofen for muscle spasms). It helps me get to sleep, not necessarily stay asleep, tho’. I started at 25mg but have been taking 50 for quite a few years. I hope it helps you, too!
I find small doses of Savella restorative. It definitely helps me sleep through the night at 25mg and helps with pain and stiffness. Doesn’t help my fatigue necessarily, but good sleep helps my brain fog clear. However, at 25mg I drip sweat at the drop of a hat, so I try cutting back to 12.5mg at times. I take 30mg of Cymbalta every other day for pain also. Except for the phenomenal fatigue I have (probably more due to cfs) I can sometimes forget I have fibromyalgia and am grateful I am no longer in the kind of pain I once was.
I just want to suggest to you that it may be the Cymbalta that is causing the ‘dripping sweat’…I have never taken Savella BUT Cymbalta has caused me to have the extreme ‘dripping sweat’ issue. Especially my head- my hair gets soaked! I googled it and it is a major problem with many.
The extreme sweating has lessened dramatically as I continue to wean off the Cymbalta.. I am now at 20mg. I experience a strange kind of dizziness as a withdrawal symptom. I find as I lessen the dosage I can gradually take the supplement 5-HTP to help with not only withdrawal but also helps with many of the problems I was taking Cymbalta for (with no success)…
I was interested in the possibility of lessening of fatigue other posters have mentioned with Savella, BUT you mentioned that it doesn’t help you with fatigue. I wish that there was better specifics on these medications and less trial and error we are expected to tolerate in finding a fit.
My interest in taking an RX for my issues is very low at this point. I do believe finding the root cause, such as infection, food reactions, digestive issues, etc is the ultimate answer.
I have cut most of my medications for autoimmune issues drastically by elimination of lectins (all grains) and adding anti inflammatory supplements is slowly healing me for the first time in a long time! I have boxes of supplements that were not effective BUT the supplement, D-Flame by NOW, has single handedly been an absolute miracle for me…
I think in the meta-analysis that from 15-20% of patients on Savella experienced significant reductions in fatigue.
D-flame…sounds really interesting…
Here’s from a review on Amazon – I have fibromyalgia and have also had severe hip pain for the last couple of years. I began taking D-Flame about 3 weeks ago. Just two pills a day, one in the morning and one at night, and I no longer take any other medications for pain. The hip pain seems to be almost completely gone and the fibro pain is greatly diminshed and I haven’t noticed any side effects. I am not totally pain free at this point, but the pain relief allows me to function more normally and I am hoping for even greater pain relief as I continue taking the product.
I can’t see what’s in it, though..
TWO things have helped me greatly.
FIRST-
Regarding the product, D-Flame, I was speaking so highly of. I have been trying to taper off of 10 mg of Prednisone for a very long time. I may get down to 7mg or 8mg but not with terrible pain and flaring. Even then, I was only able to taper down 1 mg every 6-8 weeks. Then some flare would put me back up to the 10 mg dose.
After taking D-Flame for several weeks, I had forgotten to take my morning dose of 10 mg of prednisone. Usually if I miss my dose my body reminds me very loudly that I missed it! I didn’t realize until the next day. I had some pain and aches but NOTHING like I had at all in comparison to before…
I decided to try only taking 5 mg. I have been on 5 mg now for over 2 months. No tapering! From 10mg to 5mg overnight really. I did increase the D-Flame from 2 caps to 3 caps, 2x’s per day!
The SECOND thing is that I have removed all lectins from my diet. That means ALL grains, not just gluten. Gluten is only ONE of the lectins…I started seeing Dr. Steven Gundry, MD (Google him!) He has authored one book BUT will be coming out with a second soon that will explain how lectins are responsible for so many, many health problems…the diet is strict at first so healing can take place but it is the first time I have had such amazing responses! BTW Dr. Gundry is the one who recommended D-Flame to me.
D-Flame Ingredient List on nowfoods.com
I had never heard about lectins….How long did it take once you were off lectins for you to see results?
I started to feel gradual improvement after a week. (There are other foods to avoid besides grains such as any food (animal) that consumed lectins). There is a lot more to the whole subject to learn. I am only a couple months into it…
Do you ever recall reading about lectins regarding your blood type? That is the only place I had ever heard of them until I saw Dr. Gundry.
Here is a link to one of his his lectures on the subject.
http://www.drgundry.com/articles/Lectins but I encourage you to google the topic.
Of course included in the mix are Nightshades. I have avoided these for a long time. Here is one of the best articles I have found on them (take this info to heart!):
http://www.westonaprice.org/health-topics/nightshades/: )
I wanted to add some comments about my success in eliminating lectins from my diet…
I may be excluding more foods than I need to but I am in a food reaction elimination phase.
Dr, Gundry ran labs that are specific to his focus.
I am sure many here have had the inflammatory markers tested.
The interpretation of those markers is what was new to me. These labs indicate lectin inflammation:
–TNF-alpha was high but is coming down
–Adiponection was in normal range by lab standards but the dict says it my goal is 16
I have had autoimmune Mixed Connective Tissue of love 20 years-including ‘Rupus”- (RA & Lupus mix)
Over the years I have done things that had dramatic impacts on my healing. These were the most important things I have done:
1. 2004- Had root canal teeth removed. Dramatic improvement!
There is no way to not have systemic inflammation if you have them. Been referred to as having a “corpse in the attic”.
2. Had some Prolotherapy* treatments in painful joints. Those joints treated still pain free!
3. 2007 -Began taking LDN (low dose naltrexone) – wiped lupus markers off my labs! Constant, chronic skin inflammation I had for over 10 years (called IGDA) disappeared after 2 months on LDN.
4. 2010- Eliminated Gluten. Helped a lot
4. 2015 – Eliminated Lectins snd began taking D-Flame.
* Prolotherapy is amazing! However, insurance doesn’t cover it, of course… and can get expensive! In US it is over $700++ per area.
BUT I found a doctor just over the AZ border in Mexico. He is from New Zealand and is German trained in neural therapy and Prolotherapy and more…1/10 of the price! The snowbirds from Canada decend upon the town in droves for treatment.
Kat:
I’m interested in what you have to say about root canals. I have 6 which is concerning. Is it the metal that’s the problem? I also have an artificial hip but I’m sure there is a huge difference in the quality of metal.
I gave up gluten which initially helped a lot, but then the benefits slowly wore off, back to my foggy head. For the most part the grains I eat are Farro and Quinoa.
I LOVE nightshades, but I’ve cut way back. The only ones I do eat are tomato and eggplant and in very limited amounts. The thing is I don’t feel different when I do eat them. I have no reaction.
I’ll have to check on D-Flame on the NOW website. I’m on blood thinners and so many herbal compounds interact with my blood thinners which I have to take. Life or death kind of thing.
Your approach is very interesting. I had a friend (via FB) who was in a FM group. She changed her diet completely and almost overnight her pain and fatigue were gone. I know it can happen that way for some people.
Good luck Kat,
Lorraine
Hi what is Dr name and how to contact? From new Zealand prototype ray in Mexico? Thx
Finally someone else mentioning the extreme sweating issue. I had a lowgrade fever for 20 years that spontaneously just stopped over a year ago but I still have this horrible hyper-sweating of my head and face like you described. And I take Cymbalta 30mg, a low dose. Mine you, I live in the South and we’ve had an extremely hot summer but all I have to do is exert myself in the least bit and my entire scalp is soaking along with my hair. Not a pretty sight; not a good feeling. Need to talk to my shrink about trying to go off Cymbalta as this is a huge uncomfortable issue for me. I’ll try to remember to get back and let y’all know. Does anyone else experience this with Cymbalta? Thanks. marcie myers
It’s great to hear when a drug is helpful 🙂 Sweating, if I remember correcty, is one of the more common side-effects of the drug, oddly enough.
Damn it! I wanted you I try it for fatigue and pain
I had horrible side effects with both Savella and Cymbalta.
I experienced deep boring bone pain with Savella – had to stop taking it after only 3 days- I have heard similiar reports from others who have taken it.
Cymbalta caused elevated liver enzymes indicating liver damage after approx. 6 months.
I am afraid that we, as patients who are desperate for any form of relief, are becoming the test subjects for the drug companies. It is my deep conviction these drugs will do more harm to us over the long term and cause even more suffering.
I agree about becoming test subjects. I was invited to a study to take another antidepressant on top of the Seroxat I am already stuck on. I have Addison’s so
extra meds to get off I can do without. (applies to all of course)
I noticed the company producing the drug was paying for the study, yes, guinea pigs r us.
They will never find the causes because they won’t look for them and thus will never find a cure. So sad for the sick nowadays.
Everything is ‘may, might, could’ too. We could all practice medicine like this.
x
I have had fm for over 30 years tried lyrics which helped with the pain but made my Congestive Heart Failure worse very fast, so I stopped it and briefly tried Cymbalta and Gabapentin at different times neither of which helped
My Dr suggested Savella and today is my 2nd day my fatigue/brain fog is much improved and my pain is also improving
With Cymbalta I had horrible sweating and it never helped at all with pain, the Gabapentin made me feel groggy with no improvement of pain
I hv been on higher dose of cymbalta and started lyrica with it 2 mo ago. Doe depression cymbalta is great. But alone cymbalta hasn’t helped my FM. Combing the 2 hv helped somewhat. If I miss a dose I’m feeling worse. But I do agree an opioid is the only pain reliever that works so I can function somedays …..
I’ve been on cymbalta for at least three years now and it has (had) drastically improved my pain. I did push my way through the side effects-for me the worst was nausea. I’m still on just 30 mg which did the trick until recently. My pain has increased a fair amount the past month.
The best pain control I get is from nabilone (or cesamet).
I do have regular blood work done to watch the liver and kidney function.
I’ve been on Lyrica ( 225 mg ) and Cymbalta for 2 years for CFS with high neurological pain.
They work very well on me. Pain reduction between ( %50-%90 ), sleep improvement and also they are very effective on fatigue and attacks. However, when I tried to stop them, I was as bad as I was in the beginning. I also had minor side effects, most noticeably libido related.
So, after reading the article, switching from Cymbalta to Savella might be worth trying. However, it might disturb the benefits that has been gained through continuous use of the former.
I have both FM and CFS/ME, although I am closer to the FM side of the spectrum. I’ve taken Savella since it came out. I find it helps some, although find that Lyrica really is what helps with the pain. Savella has NOT helped with my sleep issues, though–don’t I wish! I don’t fit the profile all that well, which is probably why it’s only marginally helping.
Hasn’t comment as banner obscures comment panel on left side of iPad ?
I have tried so many antidepressants and none of them helped in anyway. I tried Lyrica and had to come off it after just a week due to what it made me feel like. My Dr and I have found that gabapentin,savella and hydroxy chlorine are what works for me.
Hi DeAnn:
What is Hydroxy Chlorine? I tried to google it but the results weren’t helpful.
Did you mean hydroxy chloride? I also could not find anything for hydroxy chlorine.
I have no idea what happened to me in early December 2013 but I’d been under some unusual amount of stressors, was taking my usual Cymbalta 60mg when Savella was ordered. Well, somehow the message was miscommunicated and I continued to take the Cymbalta which should have been discontinued. Soon after beginning the Savella then, I had a day where my dog got ticketed for being outside of my yard and when I walked back in my house, I remember nothing else. Apparently I took a whole bottle of Tylenol and some alcohol and texted my daughter that I’d had it and embarrassingly emailed my rheumatologist the same. Thank God as they called 911 and after some time in the ER and ICU and 3 days on a locked psych ward, I was discharged on just Cymbalta 30mg. I will never know if this brief psychotic break was the result of too much Cymbalta and Savella combined but it sure shook me up. I know how stressful this disease is, especially when you’re already crashed and the bad stuff keeps coming at you, but a psychotic break even if only for a brief period and resolved completely???,… has this by any chance ever happened to anyone else? It’s not something people wish to discuss, I know, but since the subject of Savella and Cymbalta has come up here, I thought I’d at least ask. I have no other explanation having had no prior history of such. marcie myers
Wow Marcie, that sound so scary. No, I’ve never had that happen, but did have something similar happen that I thought was related to Seratonin Syndrome (too much Seratonin in the body).
I had left to run an errand and all of a sudden I started hallucinating. The buildings were shaking and the road got very long. Luckily I was only one block from home so I went into the house and called my mother right away. Long story short, I got EXTREMELY sick. I can’t even describe it. At times I thought my mother was going to hurt me. I had a pounding headache and she tried to bring me ice, but it hurt just placing the ice on my head. It was bad.
I can’t believe that you were on Cymbalta and Savella at the same time. Someone definitely dropped that ball. It’s so important to be as knowledgeable as possible about the drugs we take.
In the end it was thought that I had an allergic reaction to Tramadol. In fact I remembered that I had taken Tramadol earlier in the week for a headache and got sick. Right before I left my house this time I had also taken Tramadol for a headache too. After you develop an allergy, the second exposure can be much worse.
The experience you described would scare me for a long time. I hope you are okay now and that it doesn’t haunt you.
Wow! That tramadol is scary stuff. I had 2 seizures while on it. Now I’ll always be at risk of seizures from some medications, including a lot of antidepressants.
I’m so sorry you had seizures on Tramadol. They keep trying to push it as an alternative to opiods, but it seems to have a lot of adverse reactions! And know you have to worry about something for the rest of your life.
I felt that way when I had P.E.’s and had to go on blood thinners. For the rest of my life my diet will be restricted, all green leafy veggies, which I used to live on. I’m so angry about that!
Yeah, it sucks being sick. But all these meds….often it’s a toss-up between minimal relief of symptoms versus unwanted side effects. At least with sites like this we learn we’re not alone…thanks Cort!
I’ll second that! Thanks for all you do Cort!
You guys have had some physically serious bad stuff happen to you due to ME/CFS current best-shot treatment meds. If people were honest and had a better short term memory than me, we might find a whole lot of medication horror stories out there. Pulmonary embolism…uncool. Seizures… bad for the bod. Impossible to hit and stay on that thin line with ME/CFS. We are always rolling and tumbling out of control. I am. Get up. Fall down. Do it again. Just the horrid nature of the disease itself. Do something fun. Crash. Do a chore. Crash. Doesn’t matter if it’s emotional, physical, or cognitive but I’m never quite sure where that line is. Crash. Watched CFSAC at work for several hours on live video. Crash. Birthday coming (big one). Crash. It renders a person insane just with the feeling of not being in control or the feeling of being completely out of control. But what choice do we have? None that I see. We most definitely have one of the saddest diseases out there, no doubt. Sad. Bad sad. mm
that’s it exactly! not knowing where the line is or when the crash will come. i’ve been in an anger cycle recently without any obvious trigger. then i realized, we are in constant grief and the stages cycle through us, including anger.
Dear Dee, Yes, the anger is a huge energy consumer and crasher. I’ve had CFS/ME for 21 years now and have only in recent years come face to face with acceptance that this is the hand I was dealt and to deal with it more effectively. With as little anger as possible. I think the whole world has passed me by until I realize that everyone, in their own way, is struggling along. The human condition. Let go (easier said than done) of the anger. Nothing is to be gained. Luck and love to you. marcie
Amen to that!
What a profound comment. Everyone in their own way is struggling as well. We all have different things to struggle with.
Acceptance is an ongoing practice – that’s for sure. I never imagined that it would end up like this – but it has (lol)
Dee:
I’m so glad you brought that up! I’m a very sensitive person, so usually when things happen I get hurt. Now I’m full of anger and I’ll swat at anything or anybody.
I came to the same conclusion as you. I finally realized I’m in the anger stage of grief! They call it a “disease of losses” for a reason. For me (Fibro) my losses keep coming in the way that I further loose abilities to do things. I just had to buy a car because I can no longer manage my little car I love. It’s a manual transmission, I sit too low in it and I can’t get out of it anymore. I DIDN’T WANT ANOTHER CAR!!! But I have no choice. So there went 1/2 of my savings because my body continues to break down. I feel so angry about that too.
I so hear ya on this!
Dear Martinigal, Thanks both for your empathy and sharing your own haunting story. I must admit that once checked into the locked unit for a long weekend, I met a really nice girl and we had a blast that whole weekend laughing and driving the nurses nuts in a good way. I’m a retired BSN so enjoyed going to the nurses station after checking out the showers and saying “Can anyone say nosocomial (hospital acquired infection) or MRS (Methycylin-resistant staph) and JAHCO (regarding accreditation)? They had that entire shower area closed off with inspectors and maintenance coming in to see about making necessary changes because it really was growing some almighty awful stuff. Anyway, the head nurse wanted me to actually come to work there so she obviously was clueless until I explained I had CFS and just couldn’t be counted on for more than an hour. It was needless to say quite an experience. Had security officers “sitting on me” the whole time until the closed ward apparently as suicide precaution but I never meant to do any of that in the first place. Not consciously in any way but nonetheless it’s my story and I’m sticking to it. I’ve been perfectly stable since…. but you just never know is what I learned… we just never know where that edge is with all the meds we end up being on plus supplements and special diets and anything that may let us get up and on with it and live our lives as we would have chosen had ME not chosen us. marcie myers
Oh Marcie:
It’s so good you could laugh during your 72 hr observation. You gotta laugh sometimes.
Never again will I let Tramadol in my body! I’m always afraid when I’m in the hospital they will give it to me. The medical center I go to has the absolute (with all due respect) worst nurses ever. I’m in a bed with pneumonia and meningitis and have no antibiotics or liquids hung. I’m to out of it to notice until I come too 3 days later and realize it. As a BSN, how in the world could a nurse have such a patient and not question that!? I was a CT Tech and even I knew it was wrong. I would have questioned that when I was working. I swear they are going to kill me and I’m no laughing!
I took Cymbalta 90mg daily for FMS. It helped a lot with pain but after about 3 years the pain was returning. Getting off of it was HELL. I had to wean super slowly and kept having to go back up to 60mg… Finally tried Low Dose Naltrexone at 4.5mg (titrated up from 1/2mg slowly) and that took away about 60% of my FMS pain. It wasn’t enough so I added Savella. I found improvement with 25mg twice daily but ended up on 50mg twice/day. It does help a lot with pain. It’s not perfect though. The Cymbalta made me sweat like crazy. I notice some sweating with the Savella. I did have to research and ask my rheumatologist for it before she allowed me to try it. Seems it’s not that popular in the midwest but more popular for FMS back east. Strange.
I would recommend anyone with FMS to consider alternative treatments like LDN (see lowdosenaltrexone.org). Helped eliminate my IBS too.
Thanks Fig for relaying your experiences. Nice combination there. I wonder how many have tried it?
Dear Fig, the only kicker with LDN is that you can’t be on any opiods (narcotics) and many of us find that is the only true pain reliever. Were you on narcotics prior and find LDN to be equally as effective? And I have that sweating issue, especially on my face and scalp such that I look freshly showered. Not. I look a mess. You are the second person to mention the sweating associated with Cymbalta so I guess I will have to ask my doc. The Cymalta is for depression and anxiety as well while the Lyrica is not an antidepressant medication. I had a lowgrade fever for 20 years that finally just ended and I thought the hyper sweating would, too. Didn’t occur to me that it might be a side effect of Cymbalta but sure enough it is. Thanks for your info. I call mine “brain pain” in that I can’t point to the pain but it feels like my muscles and fascia are going to explode from the inside out. Hence the narcotics which are the only meds that truly intervene in the pain cycle if taken when it comes on which it does very quickly…10 minutes and I’m in a #10 pain. marcie
Yes, I did take narcotics prior to the LDN… I took percocet or hydrocodone just to get enough pain relief to sleep at night. It was hard giving them up. I do still take one tramadol and one cyclobenzaprine to sleep (reduce pain) at night along with the LDN. Yes, I miss those narcotics but the LDN plus Savella does the job well enough. I have had days I’ve wished I could take the percocet when pain is more than usual but for the most part, am happy with my current regimen.
I do much prefer the Savella to the Cymbalta. Not only does it seem to work better for me, it costs way less… ($200-300/month before insurance compared to the $700-800/month for Cymbalta). Plus I like that the Savella is a tablet (oval) rather than a sealed capsule like Cymbalta so if I want to wean down I can cut the tablet vs not being able to reduce my Cymbalta dose below the 30mg capsule….
LDN caused me to have extreme worsening pain. Caused a huge flare-up and had to increase my steroid. Never again. Cymbalta caused suicidal ideations for me after about a month. Am about ready to try Savella. Can’t afford it, but am waiting for a plan for senior citizens to be approved that will make it affordable.
Gabapentin at bedtime helps with my lower extremity pain, especially my shins which are very very tender (may be from the steroids) as skin is so thin. Any touch there feels like raw nerves.
Here is the link for the savings card where with it you can pay as little as $20/month.
https://www.allergansavingscard.com/savella
Thanks for bringing up sweating. This has just started for me. I am not on cymbalta or Savella. I sweat at the first sign of any exertion or heat. Sheets of sweat like a waterfall!
Historically, I barely sweat at all. I was an athlete and really had to work hard to perspire. I am a vegetarian. As I recall, that may have something to do with it. Regardless, this new symptom is embarrassing and uncomfortable!
The other new symptom is rapid weight gain. Ridiculous weight gain. I have Fibro/CFS/ME so, I can forget about exercising. I miss it so much. I would feel so much better if I could exert myself. Until I crashed, that is.
I found out that I have super low abnormal thyroid so that is surely part of it. I have been taking 100 mg of Topamax but have never experienced weight loss. What am I doing wrong? It helps keep migraines at bay and seizures down.
Hopefully you are addressing the low thyroid. And hopefully your dr is not a traditional T4 (synthroid) only prescribing doctor. For lots of information on thyroid replacement, I love the site http://www.stopthethyroidmadness.com. If you already take NDT, be sure your dr checks your reverse T3 levels too. If that level is high, you will have trouble losing weight even on adequate dosing of NDT until you can clear the T3 receptors.
I don’t know how you tolerate Topomax. I tried it and it made me so groggy, without great pain relief (headaches). My dr kept doubling the dosage until I could barely stay awake the next morning. I fired him and quit the drug.
Hi, Rebo. And Fig. I’m with Fig about the hypothyroid problem. If you’re taking synthroid for your low levels, I’ve always read that armour thyroid (a natural thyroid made from, of course, pigs) works much better for what is termed “secondary thyroid”. This is when TSH levels are normal but T3/T4 are low which means that your brain is sending out the message via the pituitary gland to your thyroid to release the thyroid hormone but your gland isn’t getting the message. Most people have primary thyroid where their TSH is low and their brain isn’t telling their thyroid to release the proper dose of hormone.
And sweating…. I don’t even want to get started. Head and hair and face soaking wet if I exert myself in any way. On Cymbalta which I believe must be the culprit. I had a lowgrade fever for 20 years but it went away a year ago but i still have this horrible dripping sweat. Grrrr. marcie
I’m taking Savella, I had high pain and terrible sleep problems and it’s working wonderfully. I take it at 7:30 and 5:00. However, I also take 10 mg of Amitriptyline an hour before bed and it makes me sleep like a baby! I have NO side effects from the Savella, even when I first started and I’m one of those people who always gets all the awful side effects. I was quite frankly scared to death to take it because of the horror stories I read but thank goodness I have none. I even prepared my job so that they would know I might be sick for a few weeks. It’s worth a shot, you may be one of the lucky ones who has no problems and who it works for. Good luck to everyone!
Congratulations Cara and thanks for sharing your experience. These drugs really well for some 🙂
I just started my first dose this morning. I am feeling a bit nauseated; but I feel nauseated a lot of the time anyway. I do take Zofran couple times a month.
I am hoping this helps because I am really tired of carrying around a whole purse full of medicine. I had great pain relief with Lyrica but it made my feet swell to the size of shoe boxes.
I did get assistance with the cost from the manufacturer. I am not sure I could have afforded it any other way.
I am curious. Did any of you get Covid? I did in December but it was VERY MILD. I had like a runny nose/cold type symptoms and lost my sense of smell but not taste. I have heard around that those with Fibro who get covid have milder symptoms…also. The vaccine made me sick for about one day. I have heard the 2nd one is worse. I hope not.
i just started Savella a few weeks ago. I am high pain, no sleep issues, low anxiety–and i will say, that altho it’s early in my treatment, i have been so happy at the dramatic improvement on my exhaustion and significant reduction in pain. I still take gabapentin. I briefly tried Lyrica, however, it was no better than gabapentin. Since the results were the same on both for me, i decided to stay on the gabapentin as it is MUCH lower cost and i dont get hassled by my pharmacist for gabapentin, because it is NOT a controlled substance unlike Lyrica.
I did the slow upward taper on Savella and experienced very little nausea. i also made sure to eat at least a little something to help prevent it. I am so trilled with the results….and i am hoping that Savella will give me an even greater pain reduction as i continue. It seems like the top half of my body is much improved on Savella and only some improved on the lower half of my body. However, if Savella does nothing more than what has already improved, i cant complain. The fatigue and exhaustion, for me, were almost disabling. Savella, so far, may just be the golden ticket to allow me to continue to work!!!
Anyone considering Savella should know that there is an online savings card you can download that will greatly reduce the cost of the drug. See this site:
https://www.allergansavingscard.com/savella