HealingWell
Search Close Search
☰

savella nearly killed me

Support Forums
>
Fibromyalgia
✚ New Topic locked
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/27/2010 12:09 AM (GMT 0)
right now I am seeing red I am so angry. I went to my ruemy when I started to lose weight and get heart palapatations and she said it had nothing to do with the savella. I blindly trusted her. Well today I called her again and asked her if all my horrid symptoms could be linked to the savella and if maybe we could cut it back or take me off it. I was in tears. I have been poked, prodded, been put on heart tests, sent to the ER in an ambulence for cripes sake! I am withering away to nothing here. She dared to say "we had discussed cutting me back before and I had refused to do so". Lying sack of crap she is. Luckily my mother has been with me for all my appointments and I reminded her of this fact and promtly told her she did not have my best interests at heart and it seemed I needed to find a new doc pronto before she killed me with her lack of knowledge on what she prescribes. My cardiologist is actually the one who figured it out today. He said Savalla is like speed and no one was catching the blood pressure spikes because my blood pressure runs so low that when it spikes it only goes up to what a normal persons would be. Which is actually too high for me. It leeds me to dizzyness, faintness, and blackouts. please if anyone is on this and is losing weight or having heart issues, take action immediately. You are not going nuts. run, fight, scream. insist. they listen and get it cut down or take you the heck off it. Sorry to ramble here. Thank you for listening.
Posted 8/27/2010 12:26 AM (GMT 0)
Oh Moonmatrix!!!

Was it you on the weight loss thread where you were wondering if it was your savella? You probably didn't see it - but I posted more on there for you about the side effects of savella. When I looked them up, it did sound to me like it was likely a problem.

Honey, I am soo soooooo sorry! I would be mad enough that I'd get a lawyer.

Do you know, after I read your other comment on the other topic (about losing weight and not wishing to lose) I was talking to my b/f. I said, "You know, that new rheumy NEVER went over any of the side effects with me, but he put that packet in my hand. He never asked me if I was allergic to anything that is dangerous for savella - like aspirin which is noted as being a cross allergy type thing." Well, I am suspicious that I may have an aspirin allergy so I decided not to take it. Not to mention, I was not wild about the possibility of appetite suppression since I'm too thin already - and the possibility of bloody diarrhea since I'm having ibs trouble enough.

Moonmatrix, I am so very very sorry. I know I am an ultra conservative when it comes to taking meds - I know I react badly because I have chemical sensitivities, but stories like yours are the EXACT reason I will NOT take meds lightly.

I am so glad you're off of it now. Thank heavens for your cardiologist! And thank heavens your mother was in those appointments. You've got her cornered if you want to sue her. I'm not sue happy, but she deserves it.

*hugs* I'm angry on your behalf!

PS: I also have normally low blood pressure - just like you. If it goes up to "normal" they'd never realize it is not normal for me either.

Post Edited (TheChickenPrincess) : 8/26/2010 6:31:43 PM (GMT-6)

Posted 8/27/2010 12:29 AM (GMT 0)
moonmatrix,

I wish you had posted here about your symptoms. I could have told you that a racing heart is a symptom from Savella. I had it when I was taking it. High BP is another serious symptom. i cannot believe she was so ignorant about this medication. This is the reason why I research everything and ask questions before taking anything. Some doctor's just prescribe meds and have no clue what serious symptoms they can cause. I'm truly sorry that you had to go through that.

How long have you been on it? You may have to wean off if you have been on it for a while to avoid even more nasty symptoms.
Posted 8/27/2010 12:33 AM (GMT 0)
been on it a year. Going down to 25 mgs for now. Sadly this is the ONLY thing that has worked for my pain. In tears now. I am going back to a life of being bed bound. Which is the lesser of two evils, right? Savella gave me a new life while taking my life from me. Go figure.
Posted 8/27/2010 12:37 AM (GMT 0)
*great big hugs* Moonmatrix. I know this looks really hard from this angle, but I really think that somehow there will be something else that will bring you relief. Please stick around with us. We'll stand by you. Maybe the answer isn't apparent right now - but something will help with your symptoms. It might take time to discover what will help your unique case, we're all so different, but some solution will come. I believe that.
Posted 8/27/2010 12:46 AM (GMT 0)
I went right from Savella to LDN. .didn't have to titrate off. Savella worked very well for my pain as well.. Simvastatin and Savella together though almost killed me. Many people have that very same side effect from Savella though. Your doc should be shot. So should mine!! Sorry that happened to you..
Posted 8/27/2010 12:49 AM (GMT 0)
Moonmatrix, I for one thank god you posted this. I trusted a Dr because what they prescribed fit what i knew, and it caused me to gain 70 lbs. When my Rhumey heard of it he was shocked as it isn't standard protocall ( I was given a month of prednizone w/ a cortizone shot for plantars fachitus. Cortizone shot I know, common in the work I used to do. Pred I know for allergic inflamation so I thought no more of it. Didn't know I would balloon up like a bean tick and not be able to loose it. Rhumey agreed w/ the cortizone shot, but was shock at the pred. would not elaborate though.
I am still learning this mess ( diagnosed a couple months back, suffered about 10 years) and like you have a low BP. when its up no one notices. I have to tell them every time 'Thats HIGH for me' Just went off my BC so they are gonna see a plummet soon. If you hadn't posted this, I would have gone unarmed/unwarned into a similar situatuation. Thank you for helping me.If I learn anything that can help you know I'll pass it on! Be strong, we're all in this together.
Posted 8/27/2010 1:28 AM (GMT 0)
Moonmatrix, I am so sorry you suffered such an adverse reaction to the Savella.
I'm taking Savella 50 mgs. 2x daily and have been on it for over a year without
complications. It just shows you that we are all differant and tolerate meds in our
own individual way.

Your rheumy is really trying to back pedal her way out of this situation. Because of my daily assortment of meds, my bloodwork is monitored frequently. I do check
my blood pressure and resting heart beat on a routine basis. Whenever I'm prescribed a new med I talk to the pharmacist. I think there is always a potential risk for a bad drug reaction. Because we are not doctors, we rely on our doctor's
judgement. We know our bodies better than anyone and if something isn't quite
right our docs need to listen and investigate.

Hoping you can find a wonderful rheumy and wonderful relief. Good Luck!!!

Hugs, Robin
Posted 8/27/2010 10:54 AM (GMT 0)
I've been on Savella for 6 weeks now and have lost 10 pounds-which I needed to lose. I also had the rapid heartrate while i was titrating up but that has gone away. I have not noticed any difference in my pain level though unfortunately. We all react differently to meds though. So sorry you were treated so badly by your rheumy; I hope you find another doc soon to help you.
Posted 8/27/2010 1:10 PM (GMT 0)
Hi moon, Sorry you had to go through this, but Im glad you have found out now that it was the Savella and get off of it before it does more serious damage. I am hoping that you can find something that will help with your pain but wont have the side effects. I have heard alot of good things from different people about the LDN. That might be a possibility. The problem is we are all so different in the way we tolerate these meds. I will be praying that you get some relief soon.
Gentle Hugs
Shirley
Posted 8/27/2010 2:43 PM (GMT 0)
I am so sorry you had to go through this! I can't believe no one picked up on the cause sooner. I went on Savella last summer and it raised my resting heart rate to 115. I have a problem with pvc's anyway (15,000 a day) and when I called my pharmacist he said to get off the savella immediately.

I hope you start to feel better soon!
Posted 8/27/2010 2:52 PM (GMT 0)

Sometimes the 'cure' is worse than the disease.  No more SSRI's/SNRI's or any drug in that catagory for me.  Months later, after stopping them all, I sill feel like they are killing me.  It would be nice if these doctors had a clue about how they effect our brain and nervous system and knew that withdrawal and mixing them with other serotonin boosters can be brutal and dangerous.  Ever hear about tapering slowly?  Uh, no...mine just said to stop.  It has been a walk through Hell.

None of them, ever ever again for me.  EVER!

Donna

Post Edited (vestabula) : 8/27/2010 12:20:52 PM (GMT-6)

Posted 8/27/2010 3:33 PM (GMT 0)
I'm sorry you had such a bad experience and that your doc didn't clue in on what was causing all of your problems.  And then to try to say she "told you".... I would have been livid. 

 

For myself, I know I would not be doing half the things I do each day if it was not for Savella helping me.  The doc just upped my Rx for the Savella to 100mg 2x a day.  I am keeping an eye out for any reaction this increase might cause for me, and have told  my husband to please do so as well, just in case......

 

I hope you are able to find something else to help relieve your pain without the side effects.

Posted 8/27/2010 3:48 PM (GMT 0)
You know, I've got to share this. I did appreciate my new rheumy taking time to go over all of my info with me, but there were little things that I'm recalling now which upset me a bit.

For instance, he told me he had many patients come back and say they had to stop the savella. He was handing me a starter packet of the med at the moment. He said many of his patients came back and said they couldn't live with the side effects (he didn't tell me what any side effects might be.). But - he said, a few of the patient's husbands whispered to the doc, out of earshot, that with the savella their wife was finally able to do things like grocery shopping. But if you can't live with the side effects I don't think being able to grocery shop is a trade off. At least for me it isn't. That story bothered me and I couldn't nail why - now I know, because it takes the viewpoint that the patient doesn't always recognize what's best for them. Like hell I don't!

Post Edited (TheChickenPrincess) : 8/27/2010 9:51:50 AM (GMT-6)

Posted 8/27/2010 4:20 PM (GMT 0)
Moonmatrix, I'm glad you posted this.  I'm sorry you went through this, too.  I would report your rheumy to the American Medical Association.  Not only did your doctor ignore your symptoms but also lied about it when caught...to save their hide.  You are fortunate that you had a "witness" who can corroborate your story.

 

Please don't tell yourself that you are going back to being bed bound.  That's about the worst thing you can do.  You need to keep moving and stay as active as you can.  There are other things out there that can help.  Actually, the Savella probably took the edge off your pain and the fact that you could keep moving and living your life is probably why you were feeling better.  The exercise of living makes the pain less and gives you more energy.  So, look to the future with hope.  You will find what will help  you and it might not be a ton of medication either! 

 

Did you ever try the malic acid/magnesium supplements and vitamin D3 supplements?  I swear that these have really helped me and they have helped others on the forum.  It would be worth a try.  There are links in Fibro 101 all about them.

 

Meanwhile, we are here to help you and let you know what works for us to take the edge off the pain.  You will pay a price trying to be pain-free.  We all would love that but it isn't going to happen...at least not yet.  They will get to the bottom of this illness some day and I hope it's soon.  Meantime, come here.  We totally understand what you are going through.

 

Sherrine

Posted 8/27/2010 6:02 PM (GMT 0)
Moonmatrix, I'm so sorry this happened to you. I think what doctors fail to realize is that people respond very differently to these types of drugs. What may help one person will send another to the hospital. I hope you are able to find a wiser rheumy.

No more SSRI's/SNRI's or any drug in that catagory for me.

Me neither, Donna. I've been to he** and back taking those types of meds. I know they really help some people, but they definitely aren't for everyone. I really believe they are over-prescribed. My doc has pushed me more than once to take them; I asked him if he had ever taken them. The answer was, of course, "No." rolleyes

Edited to add: I don't want it to sound like I'm dissing those who are taking meds. If it works for you, then I am happy that you've found a weapon in your fight. For me personally, the treatment was worse than the disease.

Hugs - Austen

Post Edited (AustenFan) : 8/27/2010 5:59:34 PM (GMT-6)

Posted 8/27/2010 6:56 PM (GMT 0)
I too have sworn off the SSRI/SSNRIs... it took me over six months to wean off of them and now I am going for psychotherapy to help with depression and everything else that is coming out after getting off of them, but I am determined to never go back on them again. I do realize that for some, they are needed. I'm just sick to death of doctors throwing pills at us. We go to them wanting answers, looking for help, trying to alleviate the pain, the fatigue, wanting our lives back, wanting to be happy and healthy and their only answer is "here, take this"... and with blind faith, I did, until I had a laundry list of medications that made doctors just stare at me in amazement. I've managed to wean off of five meds in the past six months. Without the SSRIs, I do NOT have more pain, which I was told would help to lessen the pain...NO difference in pain levels. Depression is much, much better and I attribute it to the therapy. I strongly believe in the mind/body connection, which I never did before but this experience has made me a believer.
Posted 8/27/2010 9:00 PM (GMT 0)
I'm so relieved reading this thread learning I am not the only one who feels this way about meds. I always feel so alone in my convictions.

Can I throw in one more recollection from my appointment? When I asked the new rheumy about using alternative things like exercise, meditation, supplements, and all those other things we all find so helpful, he said, "You can do them if you want, but we've already tried those years ago with patients. We found they don't do anything whatsoever." *sigh* His only tools are ONLY the pharmaceutical ones. I'm looking more forward to trying that holistically oriented osteopath who leaves pharmaceuticals as a last resort, and my psychologist more than ever.

(sorry to post so much)
Posted 8/27/2010 10:55 PM (GMT 0)
Thank you all so much for the support I have recieved. I have been fighting docs and meds my whole life, I am bipolar also. This isnt the first time a med has almost killed me. I am just hopping that with the decrease maybe I can stop the round of tests I have been put through. The halter monitors, the Gi tests, the whole gament may end now and I can go back to a life somewhat. As a patient we are our best advocats. Never again will I let a doctor say a med is just fine when I know it is not in the least.
Posted 8/28/2010 9:44 PM (GMT 0)
I also am sorry for your reaction and Dr. I have to ask everyone, I have LOW blood pressure too. I heard several people say that. Just wondering if that could be a reason for the fibro and thats why the Savella helps. Im always trying to figure out what the cause is. I strongly agree with keep getting exercise. The less you get the more your muscles react to the pain. You just have to listen to your body. When you feel it Stop. You have to have a balance of relaxing and moving with Fibro. Thats why I struggle through the week at work. I sit for 9 hours. How can you stay in bed all the time? I have trouble staying in it 8 hours to sleep. I get so sore it wakes me up. What kind of mattress do you have? Im getting ready to try a new topper on my mattress.  Take care. Start on a exercise routine now and maybe you will do a little better.

Posted 8/29/2010 2:23 AM (GMT 0)
WOW, I see that I am not the only one that had troubles with savella. I about made me crazy after only 11 days. I was swaying back and forth like a drunk. I stopped taking it.
Posted 8/29/2010 4:35 AM (GMT 0)
Just was googling about the dangers of savella - found there is a class action lawsuit being formed. I don't know this firm - and I don't know if this is all on the up-and-up - but maybe reading it would be useful?

http://classactionblog.mdpcelaw.com/2010/01/articles/product-defect/public-citizen-warns-of-the-dangers-of-savella/
Posted 8/29/2010 5:44 AM (GMT 0)
man i wonder if this is why i'm loosing weight like i have been? I've been on it 2 weeks and have lost so much weight that my dr wants to send me to a cancer and blood dr....sigh. Moonmatrix i'm so sorry you went through all of this. This med has helped somewhat with the pain but i'm never out of bed anymore.

Praying for you and so glad you were able to figure it out and get off of it
Posted 8/29/2010 6:10 AM (GMT 0)
Just so everyone knows, there is a class action lawsuit being formed against Lyrica too. All of these medicines have dangers but some of them do work for some people and change their lives. If Savella wouldn't have made me so sick after two months, I'd still be on it. It had me up and moving around again. I could climb up and down my stairs without hurting. I was cleaning my house again, washing clothes and cooking. I hadn't done any of that for almost two years before the Savella. My muscles stopped shaking as well. Everything we take has risks. I just wish the risks wouldn't be so terrible and I am terribly sorry this has happened to some people.
Posted 8/29/2010 12:46 PM (GMT 0)
Ok been reading everyones post. It seems to me that everyone who had alot of problems with Savella was on some other type of med. for depression or anxiety. Savella works on us the same way. I wonder if it was 2 or more meds like that causing the reactions. I have been on Savella for almost a year and I havent lost weight or had high blood pressure. I will only take one med. at a time for that very reason. When you start mixing antidepressants ans anxiety meds it CAN be very bad.Savella is a antidepressant just used for Fibro. It sounds more like your Drs. just didnt pay attention to your meds. I have to stop my Drs. all the time or they would have me on 10 meds a day. You can overdose so quickly. You just have to decide what you have to have meds for. My Drs. have been trying to put me on Antidepressants for years dur to husband dying and all of my health problems but I chose to deal without meds. It seems like everyone around me is taking meds to deal with stress.They mess you up in the long run. We have to find other ways to handle life. OK I will get off my soap box. Anyway I think that is why I tolerate Savella because I am only on one med of this type. If they take it off the market I will be disfunctional again with Fibro and IBS-D.
✚ New Topic locked
12