hibiscus57I have fibromyalgia, restless legs, depression, chronic fatique, & others. My doctor is taking me off of Cymbalta & going to Savella --using the starter kit. Anyone using it??? Results???
Just starting Savella--anyone using it & how are you feeling? hibiscus57?
- Posted:
- 6 Aug 2010 by hibiscus57
- Topics:
- depression, anxiety, dysthymia, pain, urinary incontinence, restless legs syndrome, fibromyalgia, chronic fatigue syndrome (cfs), savella
Details:
Responses (10)
kimmie18 Aug 2010
I really do not have any answers to you question, I have very low self-estem at the moment. I have been diagnosied with chronic pancratites. So, my advice would be to heck with the pills and live your life the best you can. Drugs given to me by doctors have changed from one pill to another and so on. If you can deal with the pain. Seek out a pain management doctor. god bless and i hope you find the right fit for you. Sincerely kim
17 Aug 2010
I have severe chronic fatigue with fibermyalgia. I was on Cymbalta and was still extremely ill. It enabled me to get from my bed to my chair, but I could not function. I have been on Savella several months now. I am up to 100 mg 2 times a day. I am also taking 1/2 of a 100mg tablet of Provigil everyday and the whole tablet on days I have a lot going on. There was an immediate improvement, and I am now able to take care of myself. I have to pace myself, but I have a life again. I still cannot carry anything heavy, and some days climbing steps are a problem. I have to sleep a minimum of 8 hours, and feel better if I don't get up till I feel like it, even if its 11 hours. But my quality of life has improved sooo much. Everything takes me a lot longer now, but I can go dancing, paint a room, go shopping, etc. If I do too much one day, then I rest a day or two. I sometimes have to use Voltaren Gel for pain relief, but life is good again. Going from chair and bedridden to this is awesome.
LIlablue
26 Aug 2010
Wonderful!! You are at least getting out of bed with a purpose in life
now! It is my goal as well.
Taking Savella has given me hope, although I am progressing slowly
with the dosage. It makes me extremely nervous andn seems to promote
insomnia. This is still better than extreme pain and inability to perform
any household function.
Dancing even? How exciting for you.
God bless you and may you continue to find improvement in your
life!
Lila..not so blue
starr_123026 Aug 2010
I was in the same boat as you. I was on lyrica before i was cymbalta had reaction to lyrica and cymbalta i was maxed out. So my dr put me on savella and the started pack made me feel like emotional rollarcoaster.Then i got to 50mg 1qd then my emotions were fine. Then in order to control fatigue, depression, fibro he increased the dose to 50mg tid. Not even 2wk later i was peeing striaght bld retaining fluid in my ft, ankles, and lower back. I was sent to urogloist, nephologist, (spent lot of wasted money) to come find out savella was burning up my kidneys. I just say use with caution it's been 2 wks and I still got 10lbs of fluid has to come off yet.
outofnames
28 Mar 2011
Wow! "Peeing straight blood" is an extreme reaction to Savella. I'm not sure what you mean by "burning up" your kidneys, but I have had kidney stones, so I will avoid this for the time being, at least.
I just wonder if anyone else reading this web site has had that problem or experienced the fluid retention like you did. If not, I wonder why it affected you in particular.
Thank you for your post.
chronicfatigue
30 Mar 2011
I haven't had any problems. I have had kidney stones more times than I can remember. I think you're suppose to drink a lot of fluid, which I don't, but will try to do better. All I know is that Savella is the first drug that was made directly for fibermyalgia, and it sure helps my chronic fatigue also. I thought I would never have a life again, so I hope that is an extreme reaction
missmybro...25 Apr 2011
All I can say about Savelle is DO NOT TAKE IT!!! It has very bad side effects ect. My brother was put on it & not quite 2 weeks later he was dead! He committed suicide... He's never ever thought about suicide untill after taking it . Also when he went to Dr.s office the day before, to tell her it was messing with his head, they escorted him out of the building!!! He would go into these rages, be fine one minute & The next minute he would become very violent. After these episodes he would not remember any of it. He was scared to stop taking it because The Dr. told him not to... But If the Dr.would have knew about the medicine maybe she would have at least listened to him ! I know that he just didnt know what else to do at the time! He loved life more than anyone we knew. I have read alot of stories about what others experienced while taking it & most of them were about the same as my brothers, Thank God for the ones that did stop taking it & are still with their familys today!
slamina28 May 2011
Hi and so sorry for all of you with FMS or anyother chronic pain. I feel for you. I wanted to comment on your question in spite of it being a older post as perhaps other's may see this too. I did see that someone stated their early dosage at 50mg.. That's awfully high for starting out per my reumatologist. He has had me on Savella twice and this last time, he started me at 12.5 mg. once daily for 4 days and then 12.5 twice daily for 21 days. He will then see how I am doing. I think it helped me some and I really want others to stick with it if they feel it's helping and if it is causing issues such as sick stomach or severe dissiness, this is the reason, too high a dose!!
28 May 2011
Hi and so sorry for all of you with FMS or anyother chronic pain. I feel for you. I wanted to comment on your question in spite of it being a older post as perhaps other's may see this too. I did see that someone stated their early dosage at 50mg.. That's awfully high for starting out per my reumatologist. He has had me on Savella twice and this last time, he started me at 12.5 mg. once daily for 4 days and then 12.5 twice daily for 21 days. He will then see how I am doing. I think it helped me some and I really want others to stick with it if they feel it's helping and if it is causing issues such as sick stomach or severe dissiness, this is the reason, too high a dose!!
sheila72812 Jul 2011
I just started Savella. I have Fibromyalgia,pudendal neuralgia,migraines,IBS,Insommnia IC and fatigue. I was on Cymbalta which was helping with my pain. The first time in years I was getting a real relief. But the side effects became an issue. Sexual desire dropped completely, This was a shock and new problem. I refuse to give up and continue to try new meds. I started savella this week. Since it is somewhat similiar to Cymbalta i was able to just switch over to Savella at 25MG twice a day. I had tried to wean myself off of Cymbalta but the pain became so bad I returned to Cymbalta. But at this point that is not an issue changing to Savella. i have yet to know if this will have less side effects but it is helping my pain. I am sure I will need to tweak the dosage but we will see. I also take Elavil 30MG at night to helo with the sleep.
greygallow27 Nov 2011
Hi hibiscus57! i can only tell u i have fibromyalgia, moderate bi polar disorder and also manic depressive for about 13 years. Lyrica made me gain weight, swell up like a balloon to the point my family hardly recognized me, however, the Savella made me crazy and I wanted to jump off that "proverbial bridge". It made me extremely agitated and want to rip someones head off (lol). So long story short it didn't work for me, but i can't say it won't help you, all u can do is try it and see. I only took it for a few days and I had to stop i couldn't take what it was doing to my mind and also it was making my depression worse. i hope this helps :)
9 Aug 2012
I have been taking savella for a while and i have been happy with it. I havent had any side effects. My pain is gone. I had major pain before and taking savella has help majorly. I can get out of bed and do my normal stuff. I have other medical problems so this is just one thing to mark off my list.
simonsmom17 Sep 2012
I was on savella for three years. It gave me my life back. I was able to live in a two story house and the steps were not a problem. In the early days of it I felt icky but that wore off. After three years I felt like it had stopped working and I quit taking it. Now I am back where I started. I am limping badly, fatigued all the time and I can barely make it around in my one story house. I had my Dr. perscribe savella and this time my insurance declined it. They said I had to try some "older" (cheaper) medications. They gave me Neurotin. I can't tolerate it and I will be asking for savella again. If if it not approved I will have to pay $300 a month out of pocket but it is do that or not be able to walk around. My insurance is Aatne. I spent hours on the phone with them explaining that nothing else has helped. They do not care about the patient. Only the $$$$$$$$$$
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I was ill for a very long time and in bed or a chair for 8 months. My family and friends took care of me, I had to retire because I couldn't work, and didn't know if I would ever be able to function again. I changed doctors and found one who couldn't help me right away, but he kept on researching. He finally found Savella. He didn't prescribe a bunch of pills, and he kept up on the most current treatments, and we tried a couple till we found what worked. I don't have my old life back, but I have a life again. I don't know if there's any help for your illness, but I am glad I never gave up. There was light at the end of my tunnel. Hope there is for you. Good luck..
Hello, I am new here and new to savella. I started it 1 week and 1 day ago. 25 mg 2 times a day. made me sick as a dog. My PM dr said PLEASE stick with it, it will make a major difference in your life. Today I was at my increase point to 50 mg. so I take 25mg in the am and 25 mg at night. makes me soooo ill feeling. He promises me it will be so well worth it. I was on Cymbalta for 5 years it did nothing to help me. I also tale zomig for migraines and it works great. I am so disgusted with trying t o get answers... I am going to our local teaching hospital April 4th, and I cannot wait!!!
Keep taking it. I can't begin to tell you the difference it made in my life. I couldn't do anything for myself, and was unable to work anymore. I, also, hurt or ached all over. I started Savella at 25 mg twice a day. I don't know if it made me sick because nausea was one of the symptoms of my disease, but it does not make me sick now. I am now at 50 mg twice a day. I also take 100 mg Provigil which is a stimulant mainly used for sleep disorders, but it really helps me. I went on full dose of Savella the same week I retired in June, and was able to go to the retirement party. I have been on a cruise, 2 vacations, babysit for my infant granddaughter, am able to sustain a relationship with a nice man, learning carpentry and reorganizing my house. Also, my body does not hurt as bad as it did. Some of mine is probably normal for my age. LIFE IS GOOD.
Expand this post...
I have to pace my activities and sleep til I'm ready to get up or I'm wiped out the rest of the day. Sometimes I do too much and I may hurt more and and have a lot of my old symptoms. Then I have to do a lot of sleeping and resting for anywhere from 2 days to 2 weeks as a penalty. But I have long periods where I almost forget that I have chronic fatigue and fibermyalgia.
Once you start feeling better you really need to build up your stamina, and it is difficult to balance how much you can do with getting fit again, but it is really necessary or you'll never be able to do much, and it's worth it.
Good Luck. Keep taking it, and if fatigue is part of your problem, ask him about Provigil.
P.S. I was on Cymbalta, and although it didn't get me able to do much, I've always wondered how sick I would have been without it. The Savella is a 1000% improvement over the Cymbalta for this. I haven't been able to stop smiling for the last nine months, since I got up to speed on Savella and Provigil.
I am sorry, but I told you the wrong dosage. My dosage for Savella is 100 mg twice a day, not 50. Just looked at my prescription to double check.
thank you thank you thank you for all of your moral support. I will not give up on the savella., and I will ask about the other drug when I go to the hospital on Monday. thanks kimmie, and chronicfatigue.
Contact me anytime. Let us know how it goes at the hospital. I'll have you in my thoughts that day. Karen
Savella was terrible for me. It caused terrible sweating. To the point that it was pouring off me and the doctor had to give me meds to stop the sweating my neuro said he would never give it again and took me off.
I also have the starter kit.. my Dr. promised me.." make a new woman" .. after I left the office I wasn't sure if he remembered I am on 400-milgs of neurotin 3x day.. and now slowly going to get OFF.. but I have to wait to hear from him to know for sure, if i can start Savella while still on neurotin ? the warnings seem aweful ? and it is fairly new...