Savella Update

Discussion in 'Fibromyalgia Main Forum' started by gapsych, Jan 18, 2011.

  1. gapsych

    gapsych New Member

    I am in a horrific flare and in so much pain, I almost went to the ER today.

    Has anyone tried Savella? If you have I would like to hear your experiences.

    I did a search but frankly right now I probably couldn't find my own name.

    I see my psychiatris next week and want to discuss it with him, though is is an SNRI (?) and I became manic on Wellbutrin so don't know if this would be an option.

    Any imput is appreciated.


    Isn't there a medication which also works on dopamine? Also most of the time I do well on the tramadol but am trying to brainstorm here.[This Message was Edited on 01/18/2011]
    [This Message was Edited on 01/27/2011]
  2. heapsreal

    heapsreal New Member

    What dose of wellbutrin were u on, i find 150mg fine but everyone is different. If your after some energy as well look into edronax/reboxetine its a noradrenaline reuptake inhibitor, for me it worsened my insomnia and gave me the sweats which i think most meds do that act of noradrenaline, but again give it a go and see how u travel on it, it may suit u. There are some of the older tricyclics which act mainly on noradrenaline, i think desipramine which is used for neuropathic pain and energy, theres a few others that have more effect on noradrenaline. I know your after dopamine but i think i have read where drugs that increase noradrenaline have a carry over effect onto dopamine, which i think is how wellbutrin gets its dopamine action from. Noradrenaline is said to help with neuropathic pain and dopamine can help with restless leg syndrome which i am also looking into. The tricyclics u will find alot cheaper also.

    Tramadol i find is good too, it also works on noradrenaline as well as opiate sites, so be careful with it if on other noradrenaline type meds. Another option for pain are the anticonvulsant type drugs, there alot more then just neurontin and lyrica, i had some success with topamax and many also help with sleep.

  3. gapsych

    gapsych New Member

    Thanks. I sometimes take Miripix which works on domanine for my RLS.

    I had no idea that Tramadol also works on noradrenaline.

    I don't remember what dosage I was on but the second time I did not realize I was on Wellbutrin the first time was manic, until my doctor asked for my records from the other hospital. This was ten years apart and the same thing happened.

    I do take clonazepam which is a benzo but has also been used for seizures, I believe, as an adjunct therapy. Neurontin did nothing for me. The clonazepam also helps my RLS.

    If you don't already know this, a low ferritin level, your iron storage as well as being anemic can make RLS worse.

  4. debilyn

    debilyn New Member

    Hi all,

    I tried Savella a couple of times. The first time, I got great pain relief for the first two weeks while following the 2 week titration pack. After the first two weeks, I started experiencing very uncomfortable side effects such as profuse sweating, flushing, and palpitations. I didn't realize it at the time, but my blood pressure went up from 110/70 to 150/98. So, I weaned off the Savella.

    My doctor suggested that I stay off of it for a full month and then give it another try, but this time slow down the titration; start at the lowest dose and stay there a week rather than a day. He thought that by increasing the dose much more slowly, I might get the benefits I did during the initial two weeks without the side effects. However, that didn't happen. Again, I experienced the bad side effects. The raised blood pressure scared me enough to quit Savella again. I've not tried it since then.

    This my unique, personal experience. It's important to note that individuals may react differently to the same medication--we have enough experience with this concept :)

    Best of luck to you; I hope that your bad flare passes quickly.

  5. Debra49659

    Debra49659 New Member

    Hi Gap:) I was just weaned from Savella last month. No noticable pain relief and I also developed high blood pressure, sweating and flushing.

    It was not a good match for me either.

    All I can say is try it...If it doesn't do anything for you weaning off Savella doesn't seem to cause any problems.

    Take Care,
  6. Janalynn

    Janalynn New Member

    Hi Gap,
    I also tried Savella. I almost hate to post any negative experiences because I don't want to deter you or anyone from trying anything that may be of great benefit to you. We all have such different experiences with medication.

    I was only able to stay on Savella for 5 days. You start at a super low dose and titrate up. I was nauseaous for the full 5 days and even got sick a few times. It wasn't just nausea it was the stomach pains with it. I was really bummed out - because I SO wanted it to work. A stupid side effect was disappointing.

    I say give it a try. If it doesn't work, go off of it. Many of my Dr.s patients have had good luck with it!

    I did have to wean off something (Lexapro?) gosh I can't even remember now. Actually I don't even think I got that far, but that was the plan!

    Keep us posted on what you decide!
  7. gapsych

    gapsych New Member

    Thanks for all the replies. I have a feeling that I would get too many side effects and the thought of going off other medications sounds so complicated. But sometimes that's what it takes.

    Since I have IBS which has been bothering me lately, just hearing about nausea and stomach pains makes me hurt.

    I see my doctor on Tuesday so will discuss this with him. He is not the one who really manages my FM but he often has very good ideas. I am lucky that I have doctors who are willing to work as a team.

    Again thanks.
  8. mjj3

    mjj3 New Member

    I wanted to let you know that I am also sensative to different medications and currently am working with a wonderful and sympathetic doctor. I started Savella a few months ago with the titration pack that many others use and was okay until was on full dose. I also had profuse sweating and hot flashes, but the positive was that I also had a wonderful increase in energy and some help with pain. I also take Lyrica 75 mg 3 times a day which is a smaller dose but it makes me too sleepy if take larger dose. Prior to Savella was only ableto take Lyrica 50mg am and 75mg pm and was still having severe daily headaches and severe pain. My doctor thought it may help me to hit the pain cycle with 2 different meds taking both at small doses. Since I was having the sweating, she decreased the Savella to 25 mg twice a day and I have not had the negative side effects at the smaller dose. I also had a surprising positive that not only did I have an increase in energy, but I also stopped the slow weight gain I had had when started Lyrica. I have lost a little of the weight I gained. My doctor also gave me the go ahead to take an extra dose of either if having flare. It has helped to make things workable with my 3 kids.
  9. gapsych

    gapsych New Member

    I see the doctor at two tomorrow and am anxious to see what he has to say.

    Lyreeka made me very dizzy and did nothing for the pain and I was on it long enough that I should have seen a difference.

    A baby dose will often be enough for me.

    I had heard you can lose weight. May I ask how much you have lost?

    And of course, today I have had the least amount of pain than in the last three weeks. It never fails. I'm wondering if you can take it at those times when the tramadol is not working. However, I think you have to go off the tramadol.

    I will report back tomorrow.

  10. gapsych

    gapsych New Member

    I meant to post this several days ago but life got in the way. :>)

    I saw my psychiatrist and told him about the increase in pain for the last few weeks, as well as several other week+ flares since I saw him last. The tramadol during the flares was only helping a bit and I was in agony until it kicked in.(Which is why I wanted to get the time released formula but that's another story.) Alternating the Tramadol dosages with Tyenol also had not been as effective.

    By the time I saw him the pain was down to it's usual horrific self and controlled by the tramadol. The fatigue had also reduced.

    He mentioned Savella before I did. He has patients on Savella for FM as well as depression. He said don't let anyone tell you it's not an antidepressant because it is. :>)

    I asked him about success rate and he said it has been mixed. Some people do very well on it others don't but he did state that with Savella, you will usually know right away. He said this often happens with ADs some do well, others don't and unfortunately the only way to find out is by trying it.

    So we now have a backup plan.

    If this happens again, he will increase the Zoloft.

    If increasing the Zoloft does not work we will start the Savella and wean off the Zoloft. He has all this in my records, all computerized, so if he is not there and I feel I need to do this I can get it from another doctor and a script is on order at my pharmacy.

    However, I neglected to ask him if raising the Zoloft would be temporary or permanent. Part of my dosage is for pain, part for depression. I found out the hard way that decreasing the Zoloft definitely had an impact on my pain.

    Another issue which he is looking into is that it can cause low sodium in a small percentage of people. This happened to me on another medication, Trileptal, was reported to the CDC, etc., so that might hamper this plan.

    I told him how upset I had been, didn't have the energy to even take a shower for a few days, let alone cook and lived on cereal. He said well of course, chronic pain can do this and it can debilitate you, but the next time don't be so bullheaded and call someone to help. What, me bullheaded?

    So I feel much better having a backup plan.

    I do want to say that overall I have been doing better since starting the CPAP. It's just that I need something for when I get the really bad flares. Regular flares, while not fun, I can ride them out.

    If anyone has any questions, fire away. I hope this is clear as I am typing it on the run, so to speak. I am sure I have misspelled some medications as they are not recognized by my spell checker, but will correct them later.

    Take care.

  11. Janalynn

    Janalynn New Member

    You get an A for Spelling! I think anyway...I wasn't really checking, but then, you know we don't really care, I'm just glad you typed back and gave an update!

    It sounds like you have a Dr. that really cares about you! I say having Plans A-C at least is always a good thing. But your Doc is right, being bullheaded doesn't fit into any of those plans. You have to call when something isn't working. You have a Dr. who is willing to try different things. Hallelujah girl!

    Okay so....You're taking Tramadol. Then Tramadol w/Tylenol when your pain is bad. What mgs of Tramadol are you taking? Does your Dr. allow you enough during the day when you're in a bad flare? Has he ever given you anything to take that is Extended Release?

    Does increasing Zoloft help w/pain? If so it would be to help on an overall everyday type thing. What about on your Flare days??
    Do you take any muscle relaxers or any other meds?

    I know you've mentioned what you take before, but my mind is a bowl of mashed potatoes and unless I look down I couldn't even tell you what I'm wearing, let alone what meds you take!

    I'm glad you saw your Dr. and that you have plans in place.
    I hope that the horrible pain you were feeling doesn't come back. Hope you get a good night's sleep as well!

  12. roge

    roge Member

    hi, dont have any experience with savella but i do with supplements that can raise dopamine. i have found nadh and especially acetyl carnitine both raise my dopamine (give me energy) , in fact if i take too much, i get a bit wired and some ADD symptoms. i read some studies that acetyl carnitine helped decrease pain (believe it was neuropathic pain) and there was a fibro study with acetyl carnitine that showed it helped reduce symptoms. below is the study




    Double-blind, multicenter trial comparing acetyl l-carnitine with placebo in the treatment of fibromyalgia patients.
    Rossini M, Di Munno O, Valentini G, Bianchi G, Biasi G, Cacace E, Malesci D, La Montagna G, Viapiana O, Adami S.

    Rheumatology Unit, University of Verona, Italy.

    OBJECTIVE: Fibromyalgia (FMS) is a chronic syndrome characterized by widespread pain, troubled sleep, disturbed mood, and fatigue. Several analgesic strategies have been evaluated but the results are moderate and inconsistent. Antidepressant agents are now considered the treatment of choice in most patients. It has been recently suggested that FMS may be associated with metabolic alterations including a deficit of carnitine. In this multicenter randomized clinical trial we evaluated the efficacy of acetyl L-carnitine (LAC) in patients with overt FMS.

    METHODS: One hundred and two patients meeting the American College of Rheumatology criteria for FMS were randomized into the study. The treatment consisted of 2 capsules/day of 500 mg LAC or placebo plus one intramuscular (i.m.) injection of either 500 mg LAC or placebo for 2 weeks. During the following 8 weeks the patients took 3 capsules daily containing either 500 mg LAC or placebo. The patients were seen during treatment after 2 (visit 3), 6 (visit 4) and 10 weeks (visit 5). The patients were also visited 4 weeks after treatment discontinuation (follow-up visit). Outcome measures included the number of positive tender points, the sum of pain threshold (kg/cm2 or "total myalgic score"), the Short Form 36 (SF36), a 100 mm visual analog scale (VAS) for self-perceived stiffness, fatigue, tiredness on awakening, sleep, work status, depression, and muscular-skeletal pain, and the Hamilton depression scale.

    RESULTS: The "total myalgic score" and the number of positive tender points declined significantly and equally in both groups until the 6th week of treatment. At the 10th week both parameters remained unchanged in the placebo group but they continued to improve in the LAC group with a statistically significant between-group difference. Most VAS scores significantly improved in both groups. A statistically significant between-group difference was observed for depression and musculo-skeletal pain. Significantly larger improvements in SF36 questionnaire were observed in LAC than in placebo group for most parameters. Treatment was well-tolerated.

    CONCLUSION: Although this experience deserves further studies, these results indicate that LAC may be of benefit in patients with FMS, providing improvement in pain as well as the general and mental health of these patients.

  13. gapsych

    gapsych New Member

    The doctor was mainly referring to my not asking help from others for cooking, grocery shopping etc. and the fact that I was not telling others close to me how sick I was. So yeah, mix in a bit of stubbornness thinking I could handle this myself.

    But, you make a good point. My PCP moved and she is the one who manages my pain meds. I kind of fell threw the cracks, however, I wish I had been more proactive at the time and contacted another doctor. I honestly don't know why I didn't other than the waxing and waning of the flare and thinking it would be over soon. Duh.

    As far as the Zoloft, several years ago I didn't realize I was only taking half the amount of Zoloft I usually take. The Zoloft was a different generic brand. When that switched, the pain keep getting worse and worse over several months and when I saw my PCP she said we need to up your Zoloft but the amount she mentioned was the amount I thought I had been taking. Duh. Once I was on the correct dosage again, the pain was much better, relatively speaking.

    I can take up to 300 mgs. of the Tramadol, which is the max. amount, though I think you can take 400 but not for more than 10 days. I take at least a 100- 200 daily. Don't have to take the Tylenol with it very frequently. I wanted to go on the slow release as I sometimes wait until the pain gets worse before taking it and this way I would be taking less. (this does not make sense to me now and my PCP was all for it.) However, my health insurance would not cover the slow release as it is supposedly as effect as taking the non time released tablets.

    The other meds. I take for the Fibro and sleep problems are Clonazepam, Zoloft and Lamictal which potentates the effects of the AD without increased side effects.

    I have thought about a muscle relaxer however my muscles don't feel tense. I get the deep ache that drains you. However, this last time I did feel like my muscles were tense.

    I have been for the most part lucky getting great doctors since being diagnosed. When I lived in Chicago through a few serendipitous events, another long story, I ended up with a great rheumy who studied with one of the best rheumatologist in the country. When I moved back to my hometown, I knew a lot of people who work where I go, so knew which doctor's out of the ones available.

    I am so sad my PCP moved as she had over 500 patients with FM so I did not need to go back to the rheumy whom (who?) I was not that impressed. She specifically suggested two doctors for her FM patients. The new one is knowledgeable but she looks like she should be in 7th grade, LOL.

    Thanks for responding. I think I wrote a novel but truth be known, I could have gone on much longer than this.

    Hope I covered everything. BTW,I like your fashion statement, mashed potatoes and not knowing what you are wearing. I think I will try this. Do you put gravy on the mashed potatoes or is that optional?


    ETA I forgot to mention Nuvigil which is like Provigil but with fewer side effects and lasts longer. It helps me get to 80% for about 8-10 hours and does not make me anxious or wired. Caffeine on the other hand does.

    [This Message was Edited on 01/29/2011]
  14. gapsych

    gapsych New Member

    Thanks for the information. Looks like this needs further studies. I will put this in my files.


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