Savella for fibro pain anyone????
 

I was diagnosed with RSD/CRPS over a year ago and was diagnosed with fibro. a couple months ago.
I take 3600 mg of neurontin
60 mg of baclofen
600 mg lyrica
400 mg celebrex
10/325 hydrochodone when needed
I was taking 120 mg of cymbalta but at my last visit to the pain doctor I told them about my fibro. diagnosis and they decided that I could try Savella for pain but that I had to get off my cymbalta. My pain has been getting worse and my SCS isn't working as well as it used to, so I think that is why they want to try something new. I haven't heard or read about anyone trying this med. and hoping to find some insights into it.
Apparently it is used as an anti depressant in Europe and is only approved for fibro. pain in the States.

My doc gave me a titration pack...2 weeks dose. I first went to my pharmacy to see how much insurance would pay for it...they didn't even carry it but could bet it in. My insurance would not cover it...to new. It came out on the market only in March.

I tried it for the two weeks and I felt as if I was having a terrible flare of my fibro. I couldn't cope with the side effects...it wasn't right for me but maybe for you it could be ok...:)

Have been on Savella for 5 weeks. First 2 weeks were great on the titration pack, lots of energy and no pain, but as soon as I had RX filled ($30.00 with ins.) within 3 days side effects began. Insomnia and headaches. Have been dealing with this for about 3 weeks and have missed 12 or 13 days of work due to the fatigue and headaches. Spoke to Drs. office today about how to wean off. Looks like this one will not work for me either. Already tried Cymbalta (crazy) and Lyrica (swelling and no pain relief).

same here Already tried Cymbalta (crazy, nuts thoughts of not waking up) and Lyrica (swelling and no pain relief, weight gain , Neurontin weight gain ). I think I am sticking to my Keppra and Trammadol and flexerill

Yes! Savella is one of the newer words on the tips of the tongues of rheumies!:D

Yes, this is an SNRI, used for depression elsewhere.

I have heard both good and not so good accounts of trials on Savella!

I have not tired this med as of yet. I can say my rheumy endorses it rather loudly.

I have learned to be skeptical. I think: Definitely consider new meds if you need additional relief. Always consider the safety profile before swallowing!
I have learned, over the years, to let the masses try the newer drugs out first. I don't want to be one of the first. I have seen so may different drugs come through.. only to be recalled. Better safe than sorry!:winky:

When hearing about new drugs, and anticipating tryng them, do an internet search, as often there are offers to pay your co-pay at least through a trial period! This can save you considerable money. If you have these coupons printed out first, then the doc can write the perscription according to the directions given! :)

Once in awhile I will try a "newer" drug. It depends upon how deperate I am at the time... and also what the drug safety profile looks like.

Savella is not an anti-epileptic med... for those with problems with that drug class.

Geez! Cymbalta! Might as well have set me ablaze.. or electrocuted me! :eek: Yet, some people do very well with it!:D

I understand there are a few more drugs maybe coming soon for fibro treatment? I hope these drugs do much better by majority, if not all, in need!

I recall sitting with researchers in the Boston area... 25 years ago, discussing CFS and FMS. They were doing collaborative studies and were quite sure they would have significant answers with in 10 years. It is now 25 years later!

I guess it is all much more complicated than they had anticipated?

Gentle cyber hugs to all!:hug:

Savella
 

I have been on Savella since July for my fibromyalgia. The only difficulties I had were each time he increased the dosage, I would have a couple of days of increased symptoms. I'm now on full dosage and my fibro is so much better and I've not experience any marked issues with side affects.

Hi
I tried savella in place of my cymbalta.

And I'm wondering to a degree if its part of what you are taking along
with the savella.

I talke lots of things, but it struck me that my list includes somethings
that others that had trouble with savella had on theirs too.

neurotin,
cymbalta,
hydrocene 10/325
verapymal

Anyway within a few days I started having symptoms, but didn't
realize it.

I wasn't taking it as prescribed either because I forgot it at times. But
my symptoms, were such that it was obvious.

It was throwing up, and this was all day and night, taking phenergan
didn't help after a while. HEadaches, that I thought went with the vomitting.

Also I had some diahearra, but I honestly thought it went with the vomiting,
and it was very much constant for days too.

Donna

how did they diagnose you with the fibro? Why do they want you off cymbalta. Was it not working as well?

Smiles

In my case the doctor chose to try the Savella because I don't have depression. And Savella is supposedly better for people with fibro.
It didn't work and I'm back with my Cymbalta, and very happy.
But still having some pain problems.

But the way I was diagnosed/ they did a check on body parts and
found that I have pain in the areas that its known to be in.

Donna:grouphug:

I've been on milnacipran (Savella) since April of 2007. (I took part in the drug trials to get Savella approved by the FDA.)

I find that helps the Fibro pain enough to make a difference - I quantify it at about 60% - 70%. What is more important to me is the fact that the Savella cuts the FibroFog. I'm able to get by on OTC pain relievers most days. Infrequently, I have to take a Tramadol.

I'd encourage you to try it, but I think you'll have to give up the Lyrica and the neurontin in order to do that. I'm kind of surprised they have you on both, since Lyrica (pregabalin) is a re-formulation of neurontin (gabapentin).

Just remember, if you try the Savella, take it with food!

SkyEyes

Pleased t'meetcha, tamiloo!
 

Thanks for the warm welcome, tamiloo, and hello from sunny Tucson, Arizona!

How long did you try the Savella? What other drugs were you taking at the same time? How high a dose did they titrate you up to? When I was first on the drug, I leveled out at 100 mg/day, but about 9 months later, I had them up my dosage. I ended up at 175 mg/day; that seems to work.

Unlike the tricyclic antidepressants, I don't seem to experience that falling-off of effectiveness with Savella. I hope the effect is permanent.

SkyEyes

Welcome to NT

Thanks for sharing your experience with us. That's what makes NT special. I'm sure lots of people here need to read your experience with it.

This is a great place to give and receive. Glad you found us.

There's a lot of info here, so I'm sure you'll find something to help you along the way.

I pray you find peace in some way today.

Overdose potential!http://neurotalk.psychcentral.com/images/smilies/eek.gif
 

DMom, I'm really surprised that your Doc let you take Cymbalta and Savella together! Both drugs are SSNRIs, and although Savella is not approved for depression here, it is in Europe. Taking both can lead to a thing they call Serotonin Syndrome. From Google Health:
verview
Serotonin syndrome is a potentialyl life-threatening drug reaction that causes the body to have too much serotonin, a chemical produced by nerve cells.
Symptoms
Symptoms occur within minutes to hours, and may include:
Agitation or restlessness
Diarrhea
Fast heart beat
Hallucinations
Increased body temperature
Loss of coordination
Nausea
Overactive reflexes
Rapid changes in blood pressure
Vomiting

Sounds like that's what happened to you?
I've just dropped Cymbalta and Lyrica (cold turkey), and started the Savella dose pack. Today I'm the 100mg/day dosage. So far, I've gone through a rough withdrawal period with sweats and chills, muscle cramps, NO energy at all and not very good night sleeps either. The worst has been the itching though.:(
I finally broke down this morning when I started scratching (yet again!), and took a Lyrica. I'm still itching, but not nearly as badly. The depression is fading (which is why the change in medications), as is some of the pain from the fibro. I'll let you know how it goes.....
I guess the message I'm trying to give is that, in the end, we are the ones responsible for ourselves and our health care. Given the enormous amount of information out there on the web, it is up to us to research, research, research! I love Google! :D
Be well!

Doctor just took me off of Savella. As soon as I started on the trial pack I felt like I was loosing my mind. All I did was cry, and want to crawl in a hole and die. It did nothing for the pain, actually I think it made it worse. I would not recomend this drug. Good luck to anyone who tries it. :hug:Dar aka;Floridanana

I have been on Savella for about 6 weeks. I am tolerating it well but do not yet know if it is helping my FMS. Though I can't really tell, my husband seems to think it is helping.

I have not been able to tolerate Lyrica, Cymbalta or Neurontin.

Mere

Hi Mere!

I am glad you can tolerate Savella and I hope it helps you! :hug:

Some people really like Savella.

I was not able to tolerate it at all. Yet, that is how things work with me!
I am extremely sensitive to meds.

Best Wishes to All!:)
~DejaVu

Hi Deja,

I too am very sensitive... it's seems like it is just the luck of the draw. I have read that those of us with FMS/CFS can have difficulties taking meds.

Mere

http://sacfs.asn.au/news/2010/01/01_...tition_fda.htm

This is an item that states theres a group in the US pushing to have it banned,

Rhian

I am just going to start Lyrica. I've been taking Cymbalta for a long time. It helps some and I tolerate it fine. The Tramadol I take helps some too with no noticable side effects. I was supposed to be taking Gabapentin but it didn't seem to help and it made me feel dizzy and weird so I didn't take it most the time. My problem is so far nothing helps good enough. I've also heard about low doses of Naltrexone (LDN) can help. I've got to try that.

I'm glad the topic of Savella was brought up, but disappointed with the different experiences.

Talked with my doc today about my chronic fatigue, depression, bad anxiety and daily pain. Though my pain for the most part is bearable, I honestly don't know what it would be like to not have pain! The flares are of course just awful as you all well know. But the daily chronic pain really sucks.

I've also been experiencing much worse problems with memory and...well, I don't hardly know how to describe it! I mix up words really bad and can look at somebody I know well and have to think for a minute who they are! The funny thing is my words. For instance, instead of saying something like..."Silly me!", I'll say "Milly see!" I often don't even realize it until the person I'm talking with looks at me weird and says "HUH?" LOL

Now the doc told me that Prozac is notorious for that, but the memory thing is not. He asked me about any unusual stress. Well, normally I'd say I'm always stressed out, which is true...part of my anxiety. But this last year has been extremely stressful with my 25+ year job at the university being cut back. Being single, this new and large cut in my pay is awful.

Anywayyyyyy...he said he wanted me to come back in 2 weeks...to give me time to research the Savella...(He knows me all too well, LOL!) He knows I have a lot of fibro friends and belong to this board. So he said to take the time to research and think about taking the Savella. He said it's more like the SNRI's (?) than it is the SSRIs. It has epinephrine going for it.

I guess his thought is that it would also help the depression and anxiety and help with the chronic fatigue...help with more energy.

Then I go out and read what others have said and I think...oh for sure, I'm one of those people extremely sensitive to antidepressants and I'll probably be one of those that is affected badly.

I also suffered serotonin syndrome once many years ago and NEVER EVER want to go through that again!

Just don't know what to do! I'm happy for those few that are having a good experience with the Savella. I took Cymbalta for quite some time but ended up having an overall bad experience with the depression and suicidal thoughts, quite bad actually. So, he took me off that. I was hardly off the Cymbalta for a day and boy did I have the fibro set back in, so I knew it was helping the fibro! Aargh.

Not too excited about the $30 co-pay for Savella either. Well, if I do try it, I'll let you know how it goes. I definitely don't want to go back to headache land, being a migraneur...that doesn't sound like a side effect I want to deal with.

Thanks for all your information. :hug: :hug: :hug:

Dang, that was a long post! Sorry! :o

I understand
 

I've been having problems for about 10 years now. I understand about all the different symptomes. For me I had symptoms like that and many more. Some would come and go. I couldn't figure out if anything was really wrong with me or if I was going nuts. The pain has always been there though and it is freekin REAL. I to can hardly remember what it's like to not have constant pain.

I just started taking Lyrica 75mg 2xDay. It's been over two weeks now and I'm pleased with what it does. Some of the pains in my hands and feet are better. That's the most notable but I feel generaly somewhat better all over. Although my back, hips and neck still hurt quite a bit.
I think it's helping with fatigue a littlt to. It's a little early to know for sure. I hope it stays better for awhile.

Taking different drugs is very screwy too. The different side effects. It's hard to figure out if they're making you better or worse. Some take a long time before they help. Some side effects go away after awhile and some get worse.

I tell you sometimes I felt like a zombie from taking all those drugs, Sometime everything felt unreal and I even felt like a total different person and not for the better. I have anxiety and depression too , so I've been through a long list of drugs. I deffinetly want to try Savella sometime too, to see if it works better. I'll wait for awhile though. I have the $30 co-pay on my Lyrica so I guess Savella should be the same.

Well good luck Doody and I understand how you feel. Hang in there!

Thanks Dave!

I'm continuing my quest for more experiences. :o I'm finding interesting reviews from different places, for example this site. It's somehow comforting to read what some of the people say which is...'I had forgotten what it feels like to not have pain!'

Of course it's a mixed bag of reviews, and we all know how that goes. It's an entirely different story for each of us. I think my hesitation is mostly with hearing about possible side effect of high blood pressure and glaucoma. (Which I don't have but those are big problems on both sides of my family.)

http://www.drugs.com/comments/milnac...romyalgia.html

Pain and fatigue
 

Well, it can be a long and frustrating process to find out what is going on with your body, but DON'T GIVE UP.
Keep a daily diary, list everything thing that you take, and when, and also note the pains, severity etc, and any other symptoms that you may have from time to time.
Records like this can be very handy to review later on for all sorts of things, but without them you have only a hazy, unreliable memory.
Doctors also respond well to this sort of attention to detail, as it shows that you are serious about it.
Try to take only one new thing at a time, and wait a few weeks to gauge its effects. Try taking a 1/4 dose initially to test for a bad reaction.
Time also to review your lifestyle, in particular diet.
This is sadly rarely considered by GPs, but is vitally important to both provide optimum intake of the essential things, and to eliminate those that are known to be harmful.
Mineral and vitamin deficiencies are very common, but whose GP tests for this?
A lot of foods are just plain bad for us, and again, whose GP is concerned?
As a basic rule, avoid all sugars as much as you can.
Avoid processed foods, pre made meals, soft drinks, white bread, caffeine, anything with a huge number of additives and numbers.
Eat fresh foods as a standard, drink lots of water, take a multi vitamin and mineral supplement. Good ones, not from supermarket!

I have had a huge relief from my chronic pains by taking large doses of magnesium oil and Vitamin D. An amazing difference is just a few weeks.
Deficiencies of these two items are widespread, so it is likely that you are as well. I take 5000 units of the D 3 times a week, and about 2 teaspoons of the mag oil a day. My pain meds are down to 3-4 a day from around 8.
It is important that you review everything in your life when trying to find why you are ill.
Don't look to drugs to mask things, drill down to the causes.
Good luck!

Unhappy with the drugs you are trying for fibro?

You may be interested in this:
d-ribose has shown improvements in fibro patients. I started this supplement last spring, hoping to improve stamina from my PN issues and muscle pain issues, and I have to say it is working for me! There are studies showing d-ribose benefits patients with fibro.

This is my thread on PN detailing my experience with it.
http://neurotalk.psychcentral.com/sh...ghlight=ribose

It is a slow acting supplement, but the gains do come.
this link goes into more detail:
http://hubpages.com/hub/d-ribose
Ribose is a 5 carbon sugar (unlike glucose) and does not raise blood sugars when used moderately. It comprises the substance adenosine, which improves sleep, and energy production. I think it is worth looking into for fibro patients.

Thank you for this!
 

MrsD
Boy did you read my mind or what! I was wondering how you were doing with this. I've been taking DRibose (I bought both the tablets and the powder) to try.....only been 2 weeks so far......so still waiting...

But also, my PM gave me the trial titration pack and some samples of Savella,
and I'm reluctant but willing to try. Neurontin, don't know. Still on low dose of that 300mg 3x/week.....but have my doubts.
And I DO have depression/anxiety issues, so that's why I'm willing to do this 'ginny pig' thing with him, but invariably I always end up reaching for the Hydrocodone to take care of BT pain and the 30% pain my SCS doesn't cover.

So, right now I'm kinda caught up in a whirlwind of these 'trials'.

I will certainly stick with the DRibose regardless.

Do you have an opinion about this Savella thing? I've read so many nightmares....but maybe I just keep landing on all the 'wrong' websites.
Thanks
Rae

I started the ribose at 2.5 grams at night. Worked up to 5 grams, and now take 5grams and 7.5 alternately. The powder comes with a little measured scoop.

What is intriguing with it, is its dual action inside the cells in the mitochondria and outside the cell to signal sleep induction and also moderation and balance of neurotransmitters on their receptors.

Drugs like Savella, Strattera (for ADHD), Cymbalta, etc all affect neurotransmitters and how they work, and eventually lead to all sorts of unpleasant actions. This is because we are all different in this chemistry, and the drugs don't care about our uniqueness. These 3 affect norepi levels.

Savella has high norepi effects...and these can be unpleasant, raise blood pressure, cause insomnia, and/or anxiety. Lots of sweating..

IMO the drugs out there today, are problematic for many patients. More problematic than useful.

What is nice about the ribose is that is slow, no side effects to speak of (some sleepiness in the beginning, but just take it at night). It seems to provide more restful sleep, and gives you some stamina for the daytime without jitteriness. It is not exactly cheap, however, but when used at the 5gram amount it will last about 45 days (240gram tub) for about $28.

Now that I have been doing it daily for several months, I can see a big difference if I skip a day or forget to use it. It is a very slow supplement to get going, but I am pleased with the results.

I have gathered many useful links on that thread, so please do check them out.

Be patient, Rrae! Takes about a month for stamina to kick in.
But the improved nighttime sleeping comes first. So take it at night.

Very helpful MrsD!
 

Ok, I have faith in the Ribose.....
I must admit....i AM a sucker when it comes to the Dr's visits and of course they always want to shove these 'new' meds at us....and in our desperation of pain relief and answers, we succumb. :rolleyes:

I must've missed the advice you gave to take at nite....I've been doing in morning, so will change that!
And to be honest....the taste isn't all that bad :o

I'll stick with it!
Thank you
:hug:

Another factoid.... ribose is not found in foods so we cannot get it that way. It does comprise riboflavin (vitamin B2) but we consume small amounts of that also.

Ribose is made from other things inside us, and if this fails, then we can't make adenosine, which is essential for energy production in the body. Like many things we find failing as we age that become genetic failures, ribose is getting much more attention these days.

Mrs. D, thank you so much for jumping in! If the ribose helps with energy levels, it's definitely worth a try. Right now with my huge pay cut, anything looks to expensive to me. :wink: But I'll check it out. I'll look at your links and see if you've said anything about the best place to buy the ribose. Thank you! :hug:

I too..
 

I also have RSD in my left foot up to my knee. I was also dx with the fibro mounster. The Savella cost me $50 for 30 and i have ins. its just new they say. I think it might have been helping but i didnt take it long enough.

Savella for fibro pain anyone????
 

Hi, I can't add much yet. I was on it for a month. my pain clinic prescribed it for fibromyalgia. I swear it helped the first day. The second day I had a week long pain episode that was the most severe I've had. I think it's because of all the poking and rough treatement from my nurse practitioner at the pain clinic to see if I had fibro. She set it off. They have so far given me samples because it is so expensive. My primary Dr. wanted me to change to Cymbalta
because she could get cymbalta samples. I've been on Cymbaqlta a week but after reading all the horor stories of people trying to get off it, I'm going to request going back on Savella. No horor stories yet. It isn't old enough. I did have strong side effects. The nausea and some mental stuff. Glad that's gone. After I'm back on it, I'll check back to this forum. Good luck with yours.
Val

I have been using Savella for prob 6 months or so, It has helped some. I looked into Lyrica and Savella and chose Savella because there seemed to be less side effects and what not, I only take 50 mg twice a day. When the weather changes Im in pain, when things are steady outside I have not experienced as much pain. I would recommend it. There is a website for it

What is the full dosage available on Savella