Savella, people on it more than 1 year

Hi everyone,

I haven’t posted in a while and have a question…is there anyone who has been on Savella for more than a year that doesn’t mind sharing their experience? I really thought it was helping me tremendously, but after about a year, on 100mg twice per day, I feel like it is not helping as well. I am more overall pain, seems like daily. Have any of you experienced it stop being affective? I have my doctor up my dose to 125mg twice per day, but now I have to pay for two scripts a month and it is on the higher side for my insurance. I am almost ready to chuck the medicine…curious what others have experienced.

Thanks, in advance
Sincerely,
Starr

Hi Starr1, I have never tried Savella, but have an idea that might help with the cost of prescriptions. Have you heard of GoodRx? It is NOT a prescription plan. The GoodRx cards are often found in physicians offices. You can also go online to GoodRx. GoodRx doesn’t cost anything. Go online. Type the name of your medication and it will list the cost of the prescription and what pharmacies near you carry it. Sometimes they have a coupon you can print to take to the pharmacy. You can have prescription coverage and still use GoodRx. It has saved me hundreds of dollars. Hope that helps!

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Interesting. Here in Germany, prescription - like books - cost the same everywhere. OTC stuff we can get from trusted pharmacies online at usually 60-70% of the price. (As my real life pharmacy often gives me good info, I usually buy a product there first, as a thank you / reward.)

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Hi Starr :slight_smile: - your melatonin thread seems like yesterday, but I think that’s cos I’ve been trying it… :slight_smile: Short indirect answer to your question: Looking at what a lot of others have written here, I’d say: Yes, it does stop working for some.
Pardon me for “analyzing” what you’ve written, that’s what I do with my blog/diary…: Based on what you’ve written in former posts I’d think it didn’t help you that long, since 2x25mg didn’t help and 2x50mg only a bit. That was about two months after starting: July 2020? And in Dec 2020 you already wrote that it is not helping any more, which you probably realized quite a time before. If that all fits together, it was less than half a year. And you even needed to increase from 100mg to 125 - Was it praps your adamant doc’s enthusiasm that made you think it worked :wink: So it doesn’t sound at all worth it to me. What you could try to repeat the effect is to stop it for a few months and then start afresh, going up quickly (inside of weeks) from 2x25 to 2x125mg in cycles…

Out of interest I’ve had a look at a third of the 345+ posts here on savella and found the following:
Summary: For some it’s a miracle, even after 2… years (dee_B, last seen 2014, Luna01, renewing profile 2015), which they feel everybody should take (them and Suzyb! ;-)), some have side effects but the body got used to most of them or the benefits outweigh them, and quite a lot stop it early or after a few months because of bad side effects.

Cutting the price (no idea if this is realistic): I can't afford my Savella - #2 by Laura_Weir, Anyone try "Milnacipran" marketed under the brand name of "Savella"? - #4 by Jackiem, Just started taking Savella - #2 by Luna02, https://www.livingwithfibro.org/t/savella/5144/2: The cost varies so much even in the same area that the best way to find out is to call several pharmacys.
https://www.livingwithfibro.org/t/savella/5144/3: My scrip usually cost me about $50 a month but it also depends on insurance because it was less with my other insurance I had before.
Savella? - #4 by ShanesGirl4Ever With my insurance it was under $10.

Not working any more (Rebecca, niteowlie): What do you do when it gets really bad?, Sick & tired of being sick & tired - #2 by Rebecca
Savella - #5 by niteowlie, What pain medication do you take? - #24 by Rebecca

You yourself:
"Cymbalta? Lyrica? Gabapentin? I'm confused - #19 by Starr1 Dec, where you also mention starting melatonin, Nervous about returning to work full time - #3 by Starr1 up from 2x25mg to 100mg, after it had not been working at 25mg and only a bit at 2x50mg.

Wonderful first, but stopped helping after 4 months (12mamabear): Have you found Savella effective? - #10 by 12mamabear, Wonderful first, but stopped helping even on the highest dose paid for (12mamabear): Have you found Savella effective? - #16 by Snooty

For Starr (!) it was too expensive: Cymbalta for fibro pain - #6 by Starr

Taken for a year, not working (Rebecca too…): What do you do when it gets really bad? - #9 by Rebecca

Savella with Lyrica after 8 years stopped working Just started taking Savella - #6 by witsend

Increasing from 50 after not working any more: Savella increase?

https://www.livingwithfibro.org/t/savella/1095/2: once the side effects went away so did the drugs effect in my body (MoMerrell)

100mg is the highest safe dose(?) Savella? - #15 by Laura_Weir

I been on Savella 100mg 2x’s a day for 8-10 years and it’s still working for me. There was a small amount of side effects but I’m more stubborn then that.

I have to say that between the Savella, CBD to help with the pain, exercise,& prayer it’s been good. Not going to say I don’t have bad days, but they are longer in between. I have gone the longest about 4/5 months without a flare. When one hits, it hits hard and fast.

I agree to talk to your doctor about stopping the medication for a bit. If you go backwards on your pin then you know it is helping. Nothing can take all the pain away but less is also best. Prayers.

Hi Jay,

I really appreciate this research you have done and having a sort of one stop shop for all this info. I am going to take some time to review it and see if it shelps me answer myself on some of this :slight_smile:

I appreciate what you have done here, thank you so much

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That is good advice…maybe it is just a rough time lately. I am thinking there might be something actually wrong with my back…so hard to know, but checking into it