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Does anyone take Savella?

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Posted 4/12/2010 2:21 PM (GMT 0)
Hi there. I was just diagnosed with fibromyalgia on thursday after suffering over a year of excrutiating pain. My doctor gave me a starter pack of Savella, but I haven't started it yet. I am always very nervous when I start new meds because I've had a bad reaction before. Are there any side effects that I should be aware of? My doctor said I may get nauseated. Does it really help with the pain? I have pretty much been bedridden or sofa ridden, lol, it just depends on how I feel that day, for over a year and I'd like to function again. Has this medicine helped anyone to function again? I know that I probably have false hope but it sure would be nice to be able to be a mom and wife again. I never thought that I would ever want to clean and cook again.....ever! LOL. Now, I miss all of that so much. I really miss spending time with my family and going places with them. I'm sure you all know how I feel and I'm so sorry that you have to suffer with this terrible disease.

Anyway, I'm starting to babble. Any advice would be greatly appreciated. Thank you so much for taking the time to read this.

Posted 4/12/2010 4:23 PM (GMT 0)
Hi, CajunGirl, and welcome!  I'm so glad you joined our fibro family!

 

Savella.  Well, some love it and some hate it...the same with Lyrica.  What works for one person doesn't necessarily work for another with fibro.  We have to try things and see how we react to it.  I wish I could be more help, but that's the way it is with fibro...unfortunately!

 

I don't take Savella or Lyrica.  I have managed with the maximum doses of ibuprofen with food, the maximum doses of extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 supplements to keep the pain under control.  I'm not pain-free but I do have control of the pain and can live and enjoy my life. 

 

Do keep moving with fibro.  If you sit or lay too much, you will be stiff as a board and in more pain.  It's tempting to stay in bed and not move, but it's bad for you.  Find gentle exercises that you enjoy doing.  I walk and swim as my gentle exercises.  When I started out, I couldn't walk very far but now I walk my dog 1-1 1/2 miles in the morning...for starters.  Gentle stretching exercises are good, too. 

 

Pace yourself, too.  You can do most everything you used to but not in the same time frame.  I set goals for myself for each day...reasonible goals.  I take many breaks, too, while doing them.  Your body will tell you how much you can do and when  you need to rest for a while.

 

Be sure to check out Fibro 101...the second thread on the forum.  You will find links to good info about fibro and you will learn a lot there.  There are links about the malic acid/magnesium supplements and vitamin D there.  Many with fibro are deficient in these vitamins and nutrients.  Also, there are some good stretching exercises that really do help.

 

Hot baths or showers feel wonderful with fibro.  Also, you can get a Bed Buddy at Walgreens and other places or you can make your own by taking a tube sock, filling it 2/3's full of raw long grain rice, and tying a knot at the end.  Pop this in the microwave and it will give off moist heat that feels wonderful in your especially painful areas.

 

I love to get gentle massages.  These help me a lot.  I wish I could afford to go weekly but I only go monthly.  Deep massages would kill me!  Here is a good link to find a good massage therapist in your area, if you are interested.  Make sure they work with fibromyalgia customers.  My gal is fabulous!  These therapists have to take courses every year to continue to receive certification so that keeps them on their toes. 

 

http://www.amtamassage.org/findamassage/locator.aspx

 

Don't hesitate to ask questions because we are here to help you.  I hope to hear more from  you soon.

 

Sherrine

Posted 4/12/2010 11:45 PM (GMT 0)
I was in the clinical trial for milnacipran (Savella) and had to drop out due to the side effects. It raised my blood pressure and resting heart rate way too much. Most of the people I know had to drop out due to unmanageable side effects. The side effects were severe enough that we knew we were not on the placebo. In a clinical trial, you have no control over dosage so we could not decrease the dose to see if we could adjust. You have the advantage of being in control of you dosing so start slow and increase slowly.

The first week I was on it, I barely slept. The weird part was that I had way more energy than I usually do. I would break out in a drenching sweat about 45 minutes after I took it. The sweating would last about 5 minutes. I felt revved up and had energy. I had less pain but my pain levels change a lot anyway so I couldn't say if the med helped. My blood pressure was pretty elevated, they offered me blood pressure meds but I didn't want to add a med to handle a side effect. I decided to drop out of the study when my dentist became concerned, took my BP and heart rate and refused to work on me. My resting heart rate, normally in the 60's, was over 120. I was not on it long enough to decide if it was helping but the side effects concern me.

One of my friends stayed in the study and Savella has given him his life back. He's been taking it for a few years now. It gave him energy, helped him sleep better, and reduced his brain fog. He says it helped a bit with the pain, just not as much as he would have liked. He was able to go back to work part time. He's had some undesirable side effects (sexual) that make him consider going off it but so far, the good still outweighs the bad.


I've seen you in the Lyme forum. I started with Lyme and was treated for many years. I now consider the leftover pain and fog to be fibro. Many small lifestyle changes have improved my quality of life enough that I can work and do most of what I want to do. Good luck.
Posted 4/13/2010 1:49 AM (GMT 0)
Sherrine- Thank you so much for all of the valuable information and kind welcome. I posted to you in the Mod forum.


Dagger- I remember you and thank you so much for responding. I am very concerned about my BP going any higher because my BP is already elevated. Of course, I take the Depo Shot and that was one of the side effects of it and it hasn't changed my BP at all. I guess I just have to try it to see. I wish all these new meds wouldn't have all of these scary side effects. All I want is to be able to function again. I miss doing things with my family and friends.
Posted 4/13/2010 2:19 AM (GMT 0)
Some people here have stayed at the low Savella dosage for a while before increasing their dose so they could adjust to it. If you reach a dosage that gives you a problem, talk to your doc about backing down for a while or staying at that dose until (hopefully) the side effects go away.

Savella has been used in Europe for years as an antidepressant. If you notice it changing your mood in a positive manner - great. Watch out for negative mood changes though.
Posted 4/13/2010 2:35 AM (GMT 0)
I have been on Savella for approx 1 year now and it started out being great. Relieved most of my pain, although I feel now that my Fibro is getting worse and the Savella is not even touching the pain symptoms. I have not asked about increasing the dosage but I will at my next appt. I am thinking that the reason my Fibro has increased is due to a very stressful surgery that I just recently went through. For the past 10 years, I have had almost 1 surgery per year, ranging from open heart surgery to appendicitis to several foot surgeries to my recent diaphragmatic hernia surgery. If that isn't enough stress for 1 person, I don't know what is.

Anyways, CajunGirl I hope that you soon find the medication that is right for you. Everyone is different with each medication and it seems like it is a trial and error on finding the right one. Since I had open heart surgery, I cannot afford for my BP to go up. I have not had that side affect with this medication though.

CajunGirl I do love your quote in reference to being strong. It is oh so true. Can I please use it also?
Posted 4/13/2010 5:36 AM (GMT 0)
Dagger- Thank you so much for the information on staying on a low dose for a while. I may have to do that since I am sensitive to some medication

Unique1- I am so glad to hear that it worked for you. A year of my life back would be awesome. This disease has already taken a year from me. And wow, you have been through so much. I hope things get better for you soon. You are more than welcome to take the quote. It is not mine to begin with:) Doesn't it ring true though?
Posted 4/13/2010 7:44 AM (GMT 0)
Btw, I was told by my Rheumatolgists nurse that it was okay to take Tramadol and Savella together. I research everything so I looked up drug interactions between the two and wouldn't you know, there was an interaction. A serious one at that....serotonin syndrome. I hate to even think about getting off of the Tramadol because the pain is so bad. I have hydrocodone but it upsets my stomach so bad and I'm not even sure it can be taken with Savella. Does anyone know what pain med I can take with Savella? I am waiting for the doctor's office to call me back because their system was down. If I have to take the hydrocodone, I will, but it had my stomach and esophagus burning really bad.
Posted 4/13/2010 11:25 PM (GMT 0)
Serotonin syndrome is very serious but is considered rare. Our local fibro doc recently told a few of his patients that he's seen what he considers a large increase in it.

Tramadol can act like a mild serotonin re-uptake inhibitor so when you add another SSRI, you can run into trouble. If you've been on tramadol for a while or are on a high dose and take it everyday, you may have withdrawal symptoms when you stop. It really helps to taper down slowly.

I know some people here have been told by their docs that they can take tramadol with their antidepressants and many do without a problem. Your doc may tell you it is ok to do it, but it is still up to you.

If you choose to do it, print out the serotonin syndrome symptoms so you have them available. My concern would be that some of the side effects of Savella match some of the symptoms of serotonin syndrome.

Savella can be rough on the stomach so I hope your doc can give you something for you pain that won't make you suffer.
Posted 4/14/2010 2:26 AM (GMT 0)
I took it for 6 months and it just didn't work for me at all AND I have high blood pressure and the big side effect of it is it causes high blood pressure...not good for me to begin with! To be honest I don't know why my doctor put me on it in the first place with a side effect like that. Took myself off of it and lost 11 lbs...that's a good thing! Hope you have better luck w/it than I did.
Posted 4/14/2010 2:45 AM (GMT 0)
I want to thank everyone for making up my mind for me about savella.  I am not going to try it.  I already have high BP and sweat like crazy (not menopause).  Neurontin makes me act & look drunk, I don't drink tongue   Gotta find something different.
Posted 4/14/2010 2:59 AM (GMT 0)
i took the two of them together for about the 2 months that i was on savella. i was on 100 mg of tramadol er. I am off both now, but my dr. knew i was taking them both, as he was the one prescribing them

-Aliza
Posted 4/14/2010 6:44 AM (GMT 0)
Thanks everyone for all of the information. I appreciate you all taking time out to reply. I think I am still going to at least try it to see if it helps. It's not like anything I am doing now is helping, lol. I take a pretty high dose of Tramadol, or at least I think it's high, a day. I take about 4-5 tablets a day and they are 50mg each. I think the limit is 250mg a day and I'm on that.

I am still waiting for the doctor to call me back. Their computers are down and he has to get into the system to see what all I am taking and see what we talked about. Great luck for me huh? LOL. We are moving in a week or so and I have no clue how I am going to do that. I may have to bite the bullet and take the hydrocodone and just suffer with the stomach pain.
Posted 4/14/2010 4:59 PM (GMT 0)
Hey CJ

 

I don't take Savella, but I take Prestique and Tramadol. I don't have any problems...(at least that I know of...) taking them together.

Posted 4/14/2010 7:44 PM (GMT 0)
Try taking it with food.  I know that ibuprofen can cause stomach problems.  My doctor has me taking it with food AND he has me taking Prilosec.  He said that Prilosec will protect the stomach from ulcers 70% of the time.  I don't know if that is what your problem is but if it is, that's something else you can ask your doctor. 

 

Sherrine

Posted 8/3/2011 3:03 PM (GMT 0)
savella does work , i have been in pain since 1996, and just lately was diagnosed with fybromialgia, and the start pack worked for a while, just have to keep taking it.
Posted 8/3/2011 5:11 PM (GMT 0)
CajunGrl,
I'm hoping the Savella works well for you and gives you back a lifestyle where you can do the things you want to! I was so hopeful when I tried it, but had to discontinue due to side effects. For me, I am currently unable to tolerate anything with an SSRI components, even though I had previously taken them for years (was hopeful the SNRI would have a different effect, but I wasn't lucky enough.)

When I started on Savella, my physician had me use two of the starter packs to titrate very, very slowly. So I spent twice as long on the lowest dose, before moving up to the next, etc. At first I thought it was a miracle drug. My fibro pain literally disappeared and my energy level soared, but the longer it was in my system, the nasty side effects of horrible jaw pain and unrelenting vice-grip type tension headaches took hold and I had to quit. It was so disappointing to feel such major pain relief for the first time in years, only to have things go awry.

I did have some nausea associated with Savella, but it improved with time. I also had the sweats, which occurred about 30 minutes after every dose and lasted about five minutes. If that was the only side effect I would have endured it just to take advantage of the pain relief I got.

My most recent trial has been the new antidepressant Viibryd, but I am discontinuing that effective today as the same jaw pain/headaches have resumed and inside I feel like a ticking time bomb who is ready to explode. The SSRI strikes again... I truly wish I could find something that worked for me (the older-style meds like amitriptylene sent me into a three-week zombie mode of wanting to sleep around the clock.)

Isn't it amazing all each of these affects people in such different manners. Sometimes it is a success, other times not so much, and still other times it's just downright failure. I think we all deserve relief from this misery, so for me, I"ll keep plugging away and trying what's available. Someday I'll find my answer. Hopefully the Savella will be yours!
Posted 8/3/2011 7:54 PM (GMT 0)
Savella did wonders for me.  When I started to take it immediately I felt a huge relief in the pain level.  I felt like brand new, but I developed an allergic reaction to it after a week or so.  I had closed throat feeling along w/ excrutiating neck discomfort.  I was told this was an allergic reaction. I was pretty bummed because it really was like a miracle pill for me as far as the pain was concerned.  Because of my sensitivity to the meds, the doctors are finding it very difficult to find the right med for me to take for the pain for both my FM and RA.  I have tried Savella, Plaquenil and Prednisone and whatever is in those meds it gives me neck pain, left ear ache and throat closure feeling.  Hmm...
Posted 8/8/2011 4:13 AM (GMT 0)
Hey all,

I can't say I've ever tried Sevella, but I'm on a couple of meds that have done wonders for me in conjunction with one another. I'm on Lyrica 300mg/day, Cymbalta 60mg/day, and Cesament 2mg/day. I also get, or try to, bi-weekly injections of Marcaine with no epinepherine. I'm pretty impressed with the results. I tried going off my meds to see how I'd be when I'm preggers, and let's just say I'm back on them. Boy what a difference!!
Posted 8/9/2011 2:44 AM (GMT 0)
I have been on Savella and Tramadol (50 mg/2Xdaily) and it has really worked for me. The side effects are annoying at times but manageable for me anyway. I was unable to do anything really for about 6 years and this med combination has worked wonders for me. I am able to be a wife and mother again and that is so important for me. I wish you the best and hope that Savella works as good for you as it has for me.
Posted 8/12/2011 4:37 PM (GMT 0)
After 4 long years of being in pain and many frustrating trips to the doctor I was finally dignosed with Fibromyalgia and given Savella. I just started the tritration pack on Wednesday and I'm still in a lot of pain. Does anyone know how long it takes to start kicking in?
Posted 9/4/2011 3:45 AM (GMT 0)
I have taken Savella and it raised my Blood Pressure and with it I had abdominal cramps, it did not work for me at all
Posted 9/4/2011 6:00 AM (GMT 0)
When I tried Savella I saw improvement within a few weeks. My energy level soars, my pain was markedly reduced -- I felt like it was a miracle drug and that I had gotten my life back... but unfortunately, a few weeks further into the regimen the side effects continued to escalate to an unmanageable level. I truly wish it would have worked for me and I'm so happy for everyone who has positive effects. Let's hope that you are one of them!
Posted 9/4/2011 6:17 PM (GMT 0)
I'm on Savella now. My dr. told me that it takes about two weeks before you really feel a difference and after a month you'll know how the current dose is working. He didn't have any of the starter packs so I just took 50mg a day for about five weeks. I had some issues with nausea in the beginning. I took Bonine which helped with that. After about a week my body got used to it so the side effect was no longer an issue. I have noticed somr pain relief (enough that 600mg of ibuprofen will knock most of the rest out) and an increase in my energy and this week I decided to up the dose (with my drs. blessing) to 50mg 2x a day and i'm hoping that will have even better results.
Posted 9/4/2011 9:52 PM (GMT 0)
well 3rd try to get a reply to savella thread
hope this one works
what am I doing wrong?
turn
Judy in CA
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