I’m new here & have Fibro.
I was reading up on Savella as an up and coming medication for Fibro.
Has anybody been on this and found it beneficial?
Was thinking of chatting to my Doc next time I have an appointment to see if it could be suitable.
Ta
scooterz
It was approved around 2007 but not in the EU/uk.
hey, so doctors still cannot prescribe it here in UK? wonder how ppl are getting it then who live here in England.
They are not as far as I am aware. It does not have a marketing authorisation in the EU/UK.
Hi Des, I have read Yes, milnacipran (Savella) is available in the UK as a prescription-only medication (POM). It's an antidepressant used to treat fibromyalgia, a chronic condition that causes widespread pain and tenderness, fatigue, and poor sleep.
Seems like it is available in the UK ?
I thought it was as I have heard people in the UK write reviews about it.
Supposedly it is the “up n coming” fibromyalgia drug.
If you can source the reviews that would be interesting. Again it is not up and coming as it did have a buzz around 2009 but if anything it has fallen away. You can find the scare stories about in in the US easily enough and there has not been any new research popping up about it or noise from the manufacturer.
I am sure for some it will work but recent study looking at antidepressants in chronic pain found it performed less well than duloxetine.
a really small study -
One-fourth of the 503 patients surveyed who tried Savella rated the drug as beneficial for treating pain and fatigue. Eighty percent of the survey participants were at a dose of 100 mg/day or less.
The greatest factor predicting a person’s response to Savella had to do with the severity of the drug’s side effects. Patients experiencing mild side effects were four times more likely to benefit from Savella than those who quit the drug due to intolerable side effects.
someone’s experience -
For Fibromyalgia "I was diagnosed with fibromyalgia after suffering from pains in various parts of my body, exhaustion, and overall lack of interest in most everything. I've now been on Savella 50 mg 2 times a day for about two months. My results are astounding. Significant reduction in pain, no more feeling exhausted, more active, and weight loss which I needed anyway. I do have episodes of mania though. There are times it seems like I can't stop talking. I have experienced no negative side effects and truly feel like after about 8 years I've finally gained my life back. I know this is just my story, but I hope others can get the same positive results from this medicine.
So much more out there on it. But as u say mainly in the US. Was hoping it was mostly UK as I would want to see if it worth trying this medication should doctor agree. Perhaps more complicated!
so the first bit is from a review and its sources are from the original research so circa 2009. The quote is from drugs.com review by the looks of it and probably US.
If you think it is worth pursuing then speak to your GP but knowing the lay of the land will put you in a better position. It is not normally prescribed (if at all) and it is not part of the NICE guidance options. So any chance is likely to be a private prescription off licence but I do not think there is much chance of that working.
Hi I am in the US and have had fibromyalgia, chronic fatigue syndrome and company for 30yrs but have never been on savella. I could benefit from a little bit of the mania as the fibro fog is been a major problem for me making it hard to concentrate and communicate. Back in 96 a doctor prescribed Dexedrine which gave me back 65% of my energy but in 2000 another doctor didn’t like Dexedrine and prescribed Provigal which didn’t work as well. I’m back on the Dexedrine but it is the generic version which doesn’t work as well as the brand name. It just seems like when a doctor prescribes something that works another doctor comes along or something else plays a role in “fixing something that isn’t broke” and results in breaking it. Sorry for the rant.
I have just checked the BNF and it does not have an entry still. It is listed on Wikipedia as POM but that would be the category it would be in but I cannot see anything newer that suggests it is available to prescribe.
It is available for some other treatment options in Europe but it was refused an European marketing license in 2009 (twice). Here is a list of authorisations which does not include the UK - ema.europa.eu/en/documents/...
Things change and there are private prescriptions but I again I am not aware of it being available in the UK. It is listed on the dm+d database as having special availability restrictions, no licensing authority and imported from the US.
Not sure if these are for edge cases but this is about the drug and and not its therapeutic use e.g. ability to be used with fibro patients.
I think this is about as much as I can find about this.
Thank you. Maybe this is why we all should be wary of what we read on Google. What is written there is not always correct.
sometimes there is nuance in results. The AI result did say it was available on prescription in the UK but anything AI needs triple checked.
A med being listed, being usable, and being prescribed generally. two examples are medicinal cannabis and thalidomide. For different reasons these are available in very limited settings and for particular use cases.
Some things are complicated 
I've just read the list of known possible side effects (on their own website).
"Call your healthcare provider right away or go to the nearest hospital emergency room if you have any of the following symptoms, especially if they are new, worse, or worry you: attempts to commit suicide; acting on dangerous impulses; acting aggressive or violent; thoughts about suicide or dying; new or worse depression; new or worse anxiety or panic attacks; feeling agitated, restless, angry, or irritable; trouble sleeping (insomnia); an increase in activity or talking more than what is normal for you; or other unusual changes in behavior or mood.
Serotonin syndrome. This condition can be life-threatening. Symptoms may include: agitation, hallucinations, coma, or other changes in mental status; coordination problems or muscle twitching (overactive reflexes); sweating or fever; diarrhea; muscle rigidity; dizziness; and tremor. Symptoms such as racing heartbeat, high or low blood pressure, nausea, vomiting, and flushing are common with SAVELLA.
Increase in blood pressure or heart rate. Check your blood pressure and heart rate before starting and throughout SAVELLA treatment. Before starting SAVELLA, tell your doctor if you have high blood pressure or problems with your heart or blood vessels (cardiovascular disease).
Seizures or convulsions.
Liver problems. Itching, right upper-belly pain, dark urine, yellow skin or eyes, enlarged liver, increased liver enzymes, or unexplained flu-like symptoms may be signs of life-threatening liver problems.
Low salt levels in the blood. Headache, weakness, confusion, problems concentrating, or memory problems may be signs of low salt levels in the blood. Elderly people may be at greater risk.
Abnormal bleeding. SAVELLA and other similar medicines (antidepressants that impact serotonin) may increase your risk of bleeding or bruising, especially if you take the blood thinner warfarin, a nonsteroidal anti-inflammatory drug (NSAID), or aspirin.
Manic episodes. Manic episodes may include greatly increased energy, severe trouble sleeping, racing thoughts, reckless behavior, unusually grand ideas, excess happiness or irritability, and talking more or faster.
Problems with urination. These may include decreased urine flow or inability to pass urine.
Visual problems. Problems may include eye pain, changes in vision, and swelling or redness in or around the eye. Only some people are at risk for these problems. You may want to undergo an eye examination to see if you are at risk and receive preventative treatment if you are.
Sexual problems. Taking SAVELLA may cause sexual problems. Talk to your healthcare provider if you develop any changes in your sexual function or if you have any questions or concerns about sexual problems during treatment.
Do not stop SAVELLA without first talking to your healthcare provider. Stopping SAVELLA too quickly may cause serious symptoms, including:
anxiety, irritability, or confusion
feeling tired or problems sleeping
headache, dizziness, or seizures
electric shock-like sensations or ringing in ears"
No Thanks!
Lots of medications have pages and pages of literature about side effects. They have to mention everything literally everything.
That list doesn’t put me off, all medications have a risk of side effects, some people have some, lots or none. Doesn’t mean you don’t give it a go if it could be beneficial.
Manic episodes increase energy levels. Perhaps that’s what they are channeling? No thanks.
Not every1 will suffer from the side effects, suppose u have to weigh up benefits v cons.
I don’t just dismiss a drug due to one potential side effect I would try it see how it goes. Can always withdraw worst case scenario.
If one potential side effect is "Suicide Attempt" then I'm afraid that does put me off.
You only need to suffer that one once...No seeing how it goes.
You can't withdraw from that worst case scenario.
Definitely not. But my anti depressants say risk of suicide however I weighed up all the other potential effects good and bad and took the risk. I didn’t commit suicide. Lots of medications can increase risk of mental side effects. It’s up 2 the Individual to balance everything up for them personally.
not always that easy I’m afraid.
Just wanted too say Welcome too the forum 😀
Hey to all ...
All my body hurts, I was ok yesterday, well as ok as any fibro sufferer can be hey?
hey ho and away we go AGAIN
Has anyone else had a flare up since the weather has cooled back down after it being so hot?
Appointment at Oxford hospital 
