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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 01-03-2010, 01:06 PM   #1
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RoseinSanDiego HB User
Savella anyone?

Hi everyone,
It's been a while since I posted but I had a question for you. Is there anyone with RSD who is taking Savella? If so, what are your thoughts? I've been on Lyrica 675 daily forever it seems (probably about 6-8 months) and got switched from Cymbalta to Savella. I take 2 Savella's daily and it sure seems that my pain level has increased ALOT! Also, I just had MRI of my left knee cuz I feel on it twice. I'm 200 pounds so yes, I'm a big momma and I hate it. I had 50 pound increase in weight after taking all these meds. I've gone from steroids, to massive Neurontin, to Lyrica and I have an appt for possible block (lower extremity) late January. My feet have hurt me so very badly the past few days that I was actually tempted to go to an ER but figured with the holiday, etc I would just grin and bear it. I've not ever gone to an ER, and I've had this RSD for 2 1/2 years -- What do they do if we show up at an ER? Seems all anyone can do is guesswork and treat the symptoms since there's not a cure. I'm still working 15 hours a week in the classroom. Since I fell around Thanksgiving, my left knee (my RSD began in left foot cuz of bad surgery outcome) has killed me so my RSD doc ordered the MRI, which I had last week. I'm assuming that if all is ok in my knee, then the RSD has spread to that area. I'm waiting to receive the results of the MRI.
My husband and I went up to UCLA around Thanksgiving time because I still need a plantar plate repair, but I'm unwilling at this time to take the risk of increased symptoms and increased pain of RSD. My RSD doc gave me 10-25% chance of increased pain for the rest of my life. Doesn't sound fun to me, so I'm gonna pass on the surgery. I live in the San Diego area and in July 2007 I went in for what was suppose to be the plantar plate repair -- unfortunately, it didn't happen and I now have RSD so I actually still need that surgery. Unless these researchers can figure out how to truly help us long term, I don't think I'll ever have surgery again.
I turned 50 this summer and things weren't suppose to be like this. My back has begun hurting me really badly and it's difficult for me to just get out of bed. Once I move around though, it seems to be ok so I'm grateful that it works itself out.
I will wait to hear from those of you who write me back. Thanks alot, I'm not in a good place right now so thanks for understanding.
Deb

 
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Old 01-03-2010, 04:48 PM   #2
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harmony85 HB User
Re: Savella anyone?

Deb,

I have not taken savella. I do take soma,baclofen,morphine(which just got increased),hydrocodine and lididerm pain patches. I know how frustrating this disease can be especially when it gets worse and your pain just keeps increasing.
Even though I don't have any advice with the savella I just wanted to tell you that I know what you are going through and my heart goes out to you. This disease just sucks sometimes,most of the time. I really truly hope that you get some relief.
I know in my state with my PM contract that I have that if I do go to the ER,which I haven't tried yet that I have to call my docs office first letting them know I'm going so that when I go into the ER I can tell that doctor they need to call my doctor and help with the increased pain now not just the pain in general. Most of the time that's for the massive spasms that I get but since it's been really cold where I live if I'm already feeling that way I don't want to try and brave the cold. I know it will make things even worse so I just try and grin and bare it.
I'm sorry you have to deal with all the problems that come with this disease. I wish I had better advice for you. Please just try and fight for yourself. Just because the rsd might when this battle it doesn't have to mean that it will win the war. If you need to vent,by all means I'm here.
Take care and stay warm,
Deanne

 
Old 01-03-2010, 10:10 PM   #3
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Re: Savella anyone?

Hi Deb,
I was reading about Savella following your post and noted that it is a medicine for fibromyalgia..It was interesting to read that it is not a medication for treatment of depression (as Cymbalta is) .
I hope you have some good results with it!
Let me know if you got both parts of my P.M.
I'll be thinkin' of ya tomorrow with the first day of school after break. Let me know how it goes! I'm back at work tomorrow too! I'll sure miss those long mornings in my pajamas..
Hugs,
Tigerlily xox

 
Old 01-04-2010, 12:41 PM   #4
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cardshark HB Usercardshark HB User
Re: Savella anyone?

Hi, I'm sorry but I don't have any info. on savella either. I have been on the Lyrica and Neurontin and completly understand the issue with the weight. I was 150 until I started the Neurontin and then the Lyrica now I am over 200 pounds for the first time ever, and I thought I was over weight at 150 - what I would give to be 150 pounds right now. Is your doctor ordering the savella to try to relieve the rsd pain or is it for another symptom. I can't say I had even heard of it until your post. I have been to the ER but it was in the very beginning when we didn't have a clue what the problem was. My GP told me to go to the ER because my knee was 5 timesthe size it should have been and nothing I did would get the swelling down. I was already scheduled for an MRI the following day but GP wanted me to go to the ER and said they would just do it there that night instead of waiting until tomorrow. I got there and they saw I was scheduled for MRI the next day and they gave me med for the pain and swelling and sent me home with crutches and said to have my MRI as scheduled the next day. Needless to say I was ticked! So I personally am not one that would recommend trying the ER and there is no way I would have gone over the holidays because that is when the worst doc's and the bottom of the totem pole are working and you really wouldn't have gotten anywhere and just wasted your time and money. I hope the Savella helps and keep us posted. I will also tell you to feel free to vent. We all understand to a degree what you are going through and know how important it can be to have someone to talk to that has been there!
Hang in there!!
Love
cardshark

 
Old 01-11-2010, 12:55 PM   #5
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harmony85 HB User
Re: Savella anyone?

so I was reading from a nother site what this women had from savella. I thought I would post what she had said about her experience with this drug. I hope it helps!!!

I feel VERY STONGLY that I need to send out a strong warning to all of my Chronic Pain friends and various pain-management related Support Groups about a new pain relief drug called Savella (originally developed for Fibromyalgia patients) for which I have both good news and bad news.

GOOD NEWS


I actually get pain relief from this drug - about 30% as best I can tell - and nothing other than opioids and Ketamine (and Lidocaine patches) has ever done that for me before ... It's brand new and was originally developed for Fibromyalgia patients but seems to work fairly well for chronic pain relief in general. And my results are consistent with what larger groups of chronic pain patients that have taken Savella have found with this drug.

It's also worth noting that although this drug is not technically an anti-depressant, it does have a lot of the same properties and supports the same psychological effects - which is always a good thing for a chronic pain patient.

BAD NEWS


Although some of you could potentially experience these side effects right away when you first start taking the drug, for me it wasn't until I tried to stop taking Savella that I found out the HARD WAY just how bad the side effects from even just the mere withdrawal of this drug can be.

Savella is so new that it's not yet on any Medicare Part D drug insurance provider's formulary - consequently they WILL NOT pay for it and there are no generic substitutes. Moreover a 90 day supply costs about $500-$600.



I had very VIOLENT AND UNCONTROLLED VOMITING (much like the horrible projectile vomiting you sometimes see with young babies who can't digest their food) and I could NOT keep anything down on my stomach - INCLUDING BOTH GATORADE AND JUST PLAIN WATER. I just kept throwing up until there was nothing left but liquid and even then I kept throwing up for a few more days thereafter until we finally figured out what was causing all this. My body was just completely WRACKED with wave after wave and spasm after spasm of uncontrolled vomiting, seasickness, headache, fever, and an inability to control or even maintain a reasonable semblance of balance during all this.

I CANNOT CAUTION YOU ENOUGH ABOUT THIS DRUG! And if you are taking it and find yourself in a similar position where you have to stop for some reason, please be sure that you talk to your doctor about it and work out a method whereby you can taper off very slowly so as not to trigger this same type of illness. I surely didn't need this on top of all of the extraordinary pain and weakness we all already have and it very nearly wiped me out. I sure wouldn't want to see that happen to anyone else. This drug will leave you totally wasted if God forbid for some reason you have to go through the same thing here, and it will take weeks to just build back up to your whatever your normal strength levels are again.

Sending soft gentle pain-free hugs to everyone out there! ;-)

 
Old 04-26-2012, 03:45 AM   #6
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Re: Savella anyone?

I am on Gabapentin and am not happy with the side effects (my short term memory is absolutely shot, I suffer from brain fog and low energy as well). For those of you who have tried both Gabapentin and Lyrica, which did you like better?

I am on Cymbalta, which is similar to Savella (both are SNRI's, I believe). Most of the symptoms that woman described can be minimized with a "taper," although I've not actually tried to go off of Cymbalta so I don't speak from experience.

I'm also curious to know if Savella works better for your pain than Cymbalta did? I like Cymbalta -- it has greatly reduced my pain. But it makes it difficult to orgasm and my mouth is so dry, I have to drink water constantly. These bother me less than the memory loss, but if I could go on another SNRI and not have the sex drive/dry mouth that would be great news.

Love and hugs to you all. You are all so brave and inspire and comfort me!

~Pamela

 
Old 07-09-2012, 08:23 AM   #7
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Re: Savella anyone?

I am new to this forum and I realize this post is a few months old, but I have been on a few of these drugs for fibromyalgia so I will put my 2 cents in.

I took Cymbalta for awhile (twice, actually--and I mean for 2 separate several month periods). I did not really notice much pain relief but this was for fibro. Both times all I wanted to do was lay on the couch and stare into space. I've taken several different pain medications and I've never had anything do this to me on a constant basis. I could however manage if I got up and got moving and I was working a full-time job but I was dead dog tired even then. I had alot of nausea also but not constant. They say it is hard to come off of but I stopped cold turkey and you are not supposed to do that. I had no bad effects.

I took the Savella for a few weeks. Honestly the nausea I had was constant, 24 hours a day. I told the doctor I would deal with the fibro before I would deal with the nausea. For me it was awful.

I know different drugs have different effects for different people but these 2 definitely don't agree with me and now that I have "probable" CRPS if they try to get me to take either of these I will not take them.

 
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