Milnacipran (Savella)... anyone?

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Milnacipran (Savella)... anyone?

Postby ixel-chick » Mon Jan 26, 2015 11:21 am

Hi there, new member arriving. :D

I have done a search, but it was only a couple of links coming up regarding Milnacipran... and none of them was regarding anyone using this medication (one was someone who used to be on it whilst living in the US).

I did my research before starting on it, but all info was from US sites, so would be nice to see if anyone else here in the UK is taking it. :D

(Just to inform, yes, I know it's not widely available, but discussed it with my specialist before starting, after he tried to get me onto a trial for it)


So, question is... anyone else on it? How long for? And how's it going?

I'm currently only on month 2, and feel AMAZING. Ok. Amazing might be a stretch, but compared to what I felt like 2 months ago, I do actually feel amazing. :D

I am only on half of the suggested dosage (speaking to doc again next month, I am currently happy with the dosage I take, but still want to hear his view on it) = 50mg per day.


Six months ago I was shuffling around like a zombie, pain all over and so foggy I didn't dare to use the oven or grill if by myself, as I was bound to forget it was on.

Today however I've been oiling kitchen counters, and about to paint a window frame. And the grill was already used for a yummy cheese toastie for brekkie.


I am however worried how it will continue to work. I was put on Sertraline 6 months ago, in the hope to help with the fatigue. It did help! But 2 months down the line the tablets were making me VERY depressed. To the point I stopped... I would rather not be able to walk up the stairs, than hoping I would break my neck falling down them.

The Sertraline only helped for the fatigue though, although with being more "there", it was clearly much easier to deal with everything else.


I am making the most of the now, in case the same will happen with the Milnacipran. I read for hours about peoples experiences before starting the tablets, but figured as I have just about all the side effects already (apart from depression), it would be worth a shot.


Would love to hear from others on it... and how it's going!

------------------------------------

Edit: Just adding some info here on the bottom, to make it more search friendly.

To read more regarding my experience with Milnacipran, and also see links regarding side-effects, and that it is suggested by the NHS to help those with fibro - please see my posts on this page: viewtopic.php?f=7&t=21610&start=15

Brand names: Ixel (Europe), Toledomin (Japan), Dalcipran (Mexico), Savella (US), Milborn (Asia), Milnace (Asia), Milza (Asia), Acmil (Asia). It could be that the brand names are also available in other regions, but so far this is the info I've been able to obtain. If anyone knows any more info or other brand names, please let me know.

------------------------------------

Edit 2: Change title to include "Savella", as most people know the drug under that branded name.
Last edited by ixel-chick on Thu Feb 26, 2015 7:30 pm, edited 2 times in total.
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Re: Milnacipran... anyone?

Postby ixel-chick » Tue Feb 03, 2015 10:32 pm

A little bit of a "not-so-positive" update... although, it's not a bad update. :-D

I have continued to be pain-free... until yesterday. :yikes:

Sunday I stayed up all night (through to Monday), painting the kitchen. However, in the morning, I had the genius idea that I was gonna move some furniture around... and of course went for it, without a care in the world. Table and chairs was no problem... and then came the piano. If I had any braincells left I should have known better, but I went for it... pushing and pulling the blooming heavy thing from one room to another. Heart not happy at all, and I remember thinking "Hmmmm... I think there might be a 10% chance this will kill me". :lol:


Yesterday I woke up slightly stiff (this hasn't happened since my tablets kicked in), and with pain in my elbow. I wasn't certain if the pain was due to fibro or arthritis having spread, but as the day went on, the pain also spread to my hip and knees (not the be confused with my arthritis pain in the knees), confirming that it was the fibro. Oh the joys. But, it wasn't bad, more of an annoyance than anything else. Body fully functional, just painful.


Today I woke up slightly stiff again, but better than yesterday, and all the pain is gone.


So, although the tablets are doing wonders, it does turn out, that even on them, I can over-do it.


That said, the way I was before the tablets, I would never have been able to paint the kitchen or move the piano about! Although I had slight pain yesterday, and feeling stiff two mornings in a row, I am not experiencing any sign of the fatigue. :-D
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Re: Milnacipran... anyone?

Postby ixel-chick » Sat Feb 21, 2015 6:52 pm

:lol: I'll update here although I'm just taking to myself. :lol:

I've finally been discharged from the hospital (yay! No more hassle of going to the city, and spending ages trying to find parking), and have even managed to get an appointment with my GP (yay!).

Aaaaaaaand - I now have a prescription for Milnacipran (yay! My GP was ace about it) but cannot get the blooming stuff anywhere. :lol: it's a private prescription from my GP, as he couldn't issue a NHS one, as it wasn't on the system for NHS drugs available here in Scotland. From what I understand from my last hospital app, a private prescription can be used in any pharmacy in the the EU.


Due to the hospital appointments and following GP appointment (I was hoping to get the prescription for it at the hospital, but apperantly they couldn't give me that there, and I had to see the GP), I have also run out of my tabs. :yikes:


Last one taken early evening on Thursday, and pain started to come back last night. However, it's only the pain for now (thank goodness), and hopefully I will get the tabs before the blasted fatigue or fog comes back (I have ordered some, should arrive first week of March, just incase it will take too long to find a place where I can actually order some with my prescription).


Spent hours on the phone and sending e-mails as soon as I got home with my prescription, thinking I would surely find somewhere to get the drug.


And so far I've been met with some rude, some puzzled, and some apologetic "no"s. :lol: I was hopeful when my local pharmacy found it on their system (yay!)... although they couldn't give me a price until they had ordered the drug. I tried to get some sort of estimate (as I know what price I can get it for without a prescription), but in the end I got no-where apart from that "it won't cost as much as £200" (it's currently costing me no-where near that amount).

I agreed to have it ordered, and gave them my number for them to call when it arrived. 2 minutes later I got a call, as when they tried to order it, they couldn't!


I've contacted a few pharmacies in England. With milnacipran being recommened on the NHS website - surely they would be able to dispense it! And so far that's two "no"s, and I don't have any high hopes for the ones I've yet to hear a reply from.


So, I found a pharmacy chain that also has pharmacies in Europe... this time I felt lucky, and called the nearest one to me, in the hope they could pull some strings within the chain. And again that was a no, as although they were part of a chain, they had no working relationship with any of the other branches. Grrrr. Instead I have now contacted the head office for the chain, asking for details of some of their European pharmacies (still awaiting reply).


Now having given up on the UK, I decided to widen my search, and contacted a few pharmacies in France. One was a no, and the others haven't gotten back to me.


I then got in touch with the makers of Ixel (what the hospital recommended I'd do, if it was difficult to get in the UK, then ask the producer where to get it in the EU), and haven't heard anything back from them either.


I have found out that Asia also does different brands of this medication: Milborn, Milza, Acmil and Milnace (all milnacipran). :-) Not that it's of any help, as any of the reputable pharmacies there (those that need a prescription) don't ship medication outside the country.


My biggest problem is actually finding pharmacies to contact... as when you try to google it all sorts of iffy sites will come up. :lol: If I'd lived in London I would have just made a day out of it, taking the train/ferry down to France to see if I'd have any luck, but as it stands, France is a tiny bit too far away.


So... I got a prescription and so far no-where where I can use it. :lol:


Apart from my slight set back after the piano moving, I have been completely pain and fatigue, until now. Although the pain is now creeping back (not really creeping when it comes to the legs and feet - more like bouncing in like a gazelle on speed!), I got fingers and toes crossed that the fatigue will stay away until I get the tabs. From what I remember with the sertraline, it took about 2-3 weeks after I came off them before the fatigue started coming back, so I should be in the clear.
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Re: Milnacipran... anyone?

Postby Zia2014 » Sun Feb 22, 2015 1:20 am

Wow what a nightmare for you! It's ridiculous you can get a script but not the tabs. I'm at a loss over what to suggest really...
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Re: Milnacipran... anyone?

Postby ixel-chick » Sun Feb 22, 2015 1:35 am

Zia2014 wrote:Wow what a nightmare for you! It's ridiculous you can get a script but not the tabs. I'm at a loss over what to suggest really...

:lol: It's ok, I got them before without a prescription, and got more on the way. :lol:

But I want to get them through the proper channels. As I said to my doc, I don't really have a problem with obtaining them "elsewhere", but my problem is that it's so easy to get all sorts of pills in that way, and I think a majority of the people taking a lot of those pills shouldn't be on them. So I would rather get them with a prescription, through a reputable way, instead of supporting those that sell pills "off counter". It completely changed my life, but I did hours of research on which pills would be the best (milnacipran), what potential side effects where, how to recognise any side effects that would be dangerous (the biggest danger with the milnacipran is serotonin syndrome), I also informed my hubby regarding it (incase he would notice anything amiss).

So, I am determined to get them with my prescription! Haven't been able to make calls this evening, but have been bashing out e-mails in the hope to get a "yes" from somewhere. :lol: I don't give up easily, so I'll get there in the end.

-----------------------------------

Edit:


Well... the fatigue clearly didn't stay away anywhere near the time I had hoped!

This morning I hung a curtain = knackered. Hmmmm... but though it might be a one off... until a few hours later took the hoover upstairs to whiz about. Carrying it up the stairs = knackered! And that's not even using it, just carrying it upstairs.


So... that's last tab on Thursday, Friday night pain started returning. Sunday fatigue started returning (I don't feel knackered until I do something, so clearly not back in full swing yet).


It's gonna be a long week until the tabs arrive! :lol: And then I might just have the fun of the side effects again. But I really don't mind. One week of feeling rubbish now, and another to adjust to the tabs again is peanuts, as I know the rewards that will come after.
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Re: Milnacipran (Savella)... anyone?

Postby ixel-chick » Thu Feb 26, 2015 7:20 pm

Yes! You can get Milnacipran (most of you will know it as Savella) with a prescription here in the UK!

After doing my research on with medication I wanted to try, Milnacipran was the one that stood out to me. Duloxetine is the one that was the most similar, but as I kept reading I found that, although a lot more people stay on the duloxetine (a lot of people stop the milnacipran due to the side effects), they seemed to continue to take a lot of other medications on top of it.

However, it seemed a small percentage of those taking milnacipran were able to get off all other tablets - and get their lives back. This was the tab for me. It might not have worked, I had no high hopes, as it seems to only improve the lives of about 30% of those that take it, and a high percentage of people on it will stop taking it due to the side effects. Out of those that it helps, some got their lives back completely.

After reading about all the side effects (link first post), I decided it was worth a shot.


And yesterday I finally got confirmation from a small pharmacy chain here in the UK that they can supply it!


I have gotten so many no's, but was determined to continue until I would get a yes. :-D My prescription is a private one from my GP (as SIGN here in Scotland claim that milnacipran is not available in the UK), but it should be possible to get this prescription via NHS. I am assuming it won't be an easy battle, but I believe the possibility is there.

NHS won't be too willing, as duloxetine, a similar drug, is available... however, if duloxetine isn't the right drug for someone, then they might just be able to push for trying milnacipran. The drug isn't strictly disallowed on the NHS, and if a GP cannot find a suitable licensed drug, then they do have the option of prescribing one that's not licenced (this doesn't mean they will, but they can).


So... I've managed to get a prescription for it, and I've managed to find a UK pharmacy that can supply it! :-D If anyone does get a prescription and cannot find a supplier, let me know.



On a different note, I've now been off the tabs for a week. That makes Thursday last tab, Friday pain came back, Sunday fatigue came back, Monday migraines came back (oh the joys), and Wednesday the painful skin came back. Ack. So far fog is staying away, although I did go to bed with my glasses still on last night. :lol:

Yesterday was very bad indeed... had to go shopping in the city. Something I hate even on a good day. So there I was, suffling around like a zombie due to the fatigue, the fibro pain topping up the arthritis pain in the knee, so right leg barely worked, the skin on my arms was burning, I had a migraine so all light hurt (hat pulled down over face)... and to top up the fun-fun time I was having my blooming body decided it was ovulation time (I get really bad mid-cycle pain) as I shuffled around in B&Q! :lol:

I looked as improved IBS as a massive bonus on the tabs, and my tum is now back to being a pain in the behind.

My brain is now basically, apart from the fog, back in full on fibro mood, a week off the tabs.

On the up-side there's no withdrawl symptoms, and it's not addictive (for me anyway. I found the sertraline addictive when I tried that). As this is just a temp break from the tabs, I'm more or less looking at it as an experiment. :-D I still don't know how long for the tabs will work when I start them again (I've seen quite a few people, who didn't have major side effects in the beginning, have to stop taking them after a couple of years, as they then developed major side effects).

I am also curious to see if I have to go through the side effects again, or if my body will accept the tabs straight away when I start on them again.


-----------------------------------


Edit: Tabs arrived earlier than expected. :-D Still the branded Ixel (by Pierre Fabre).

Am starting them again today, so will see if the side-effects (I've only been off them a little over a week) kicks in again, and how long it takes me to improve.

First time around on the tabs I noticed a difference in the pain after 4 days. 4 weeks in I hardly had any pain at all. 8 weeks in all pain gone. As I'm nowhere near as fatigued as I was the first time around it will be difficult to compare how it works with the fatigue. Luckily my dreaded eye-floaters, which dissapperared at the end of the last round hasn't returned. My migraines aren't as frequent as they were before I started the first batch, but by week 4 then they had been reduced to headaches, and by week 8 they were completely gone.
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Re: Milnacipran (Savella)... anyone?

Postby *Lisa* » Sun Mar 01, 2015 7:28 pm

Good luck and i hope they continue to be of benefit to you. Is your GP going to monitor you on them for a while?
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Re: Milnacipran (Savella)... anyone?

Postby ixel-chick » Sun Mar 01, 2015 8:00 pm

*Lisa* wrote:Is your GP going to monitor you on them for a while?

Goodness me - no! :lol: I'm all done now, and probably won't be back at the doc for years (if the milnacipran stops working I will try to up it to the recommended dosage of 100mg a day, if no luck then to take a longer break from it, then see if it starts working again, otherwise I will try Cymbalta, which after having done all my research would have been my second choice, although I found that most people on that also continued to have to take other medication). He knows I've been on them for 2 months, got a detailed (way too detailed!) summary of my first 9 days when I had side effects, a summary of what had improved (and what hadn't) at 4 weeks, and another summary of what I felt like at 8 weeks. I will write him a letter at some point, with the info I got regarding where to obtain it from a chemist with a prescription (and also the reply from the makers of the drug, which was hilarious), as I know there's others going to the doc who's found no relief with other medication for fibro.

I don't go to the doc unless there's something I cannot fix myself. My problem with fibro was that I had no blooming idea what was wrong with me. :lol:

So that's me, discharged from the hospital, and hopefully taking a very long break from the GP.
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Re: Milnacipran (Savella)... anyone?

Postby lifeseeker » Sun Oct 11, 2015 11:31 pm

Hello Everyone,

Does anyone know of a UK pharmacy that stocks Savella please.

I would be very grateful for any information.

Kind wishes
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Re: Milnacipran (Savella)... anyone?

Postby Geedouble » Thu Oct 22, 2015 2:23 pm

lifeseeker wrote:Hello Everyone,

Does anyone know of a UK pharmacy that stocks Savella please.

I would be very grateful for any information.

Kind wishes
Lifesseker


I would like to know the same.
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Re: Milnacipran (Savella)... anyone?

Postby lifeseeker » Thu Oct 22, 2015 3:24 pm

Hi Ixel-Chick,

Please could you let me know which pharmacy in England dispenses Savella?

many thanks

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Re: Milnacipran (Savella)... anyone?

Postby JohnBoy2000 » Tue Aug 21, 2018 10:36 am

Bumping this hella old thread as -

Looking for reliable source I can purchase Milnacipran from online?

I know there's a lot of cowboy outlets.
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Re: Milnacipran (Savella)... anyone?

Postby *Lisa* » Wed Aug 22, 2018 9:40 am

Just wanted to say to all members that watchdog recently made a programme all about buying meds online. It’s well worth watching this before you start seeking. You can catch it on BBC iPlayer.
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