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notcrazy-yet
01-05-2010, 12:05 PM
Hello, I am 30 years old and have had IC for 12 years now and am slowly aquiring new issues as I go. I have IBS, Hypothyroid, PCOS <high cholesterol and sugar issues because of this> and take regular meds to control these and the newest is fibro. They have put me on savella 50 mg but it is making me vomit about two hours after taking it -no matter the amout of food consumed and I even tried halving it. Its been about two months now and I assumed (you know what they say about assuming anything) that I would get used to it by now...anybody have any experience with this medication? Thanks!

Tuckersmom
01-06-2010, 04:46 AM
I took it for a few weeks. It didn't cause me any nausea. I started with a 12.5 mg. dose and worked my way up to 50 mgs. twice a day.

SharonA
01-06-2010, 04:58 AM
Hopefully, you have been communicating with your doctor about this.

Charisse
01-16-2010, 01:13 PM
Sorry to hear this. Savella is something I'm considering trying but am leery of the side effects too. How are you doing now?

donnadb040
01-16-2010, 06:36 PM
Whew!!! 50mg for a starting dose is very high! You should try to drop down to about 12.5 as a starting dosage and then go up VERY slowly!

skeetor
01-17-2010, 03:02 AM
I agree with the previous post, 50 mg daily is too much to take in the beginning. My pain management doc gave me a starter dose pack. I started with 12.5 mg tabs and was told to split them in half and take twice a day, building up to taking half of a 25 mg tablet twice a day, etc. It was a very slow process over a two month period. Now I am up to 50 daily at night. Savella has worked wonders for me. Mornings are rough as usual waking up with bladder pain and fibromyalgia. But the pain is less searing. But once I get out of bed and am up and about, I'm still able to manage my full time job.

If I didn't have Savella, I'd be relying on Vicondin to take away the pain since that is the only med. that dulls the nerve pain and I didn't want to go down that path. I have no side effects from the Savella. It has saved my life and has made these 2 dreadful diseases somewhat bearable. Hope this helps. Fact of the matter is, never give up, research all options and keep trying a combination of things to find what helps.

mouse
01-17-2010, 01:42 PM
My doctor gave me a packet of savella for my fibro but I have been afraid to try it because I read that it can cause urine retention and I get this from alot of meds. Has it caused urine retention for anyone and does it actually work??? Lyrica did wonders for the fibro but nothing for the pelvic floor pain. I had to go off it because i had too many nasty side affects.

Tuckersmom
01-17-2010, 03:01 PM
The Savella didn't cause any retention problems for me, but then again, neither have any of the other meds I've tried or am presently taking. It helped greatly with pain.

mouse
01-17-2010, 03:21 PM
What type of pain did it help with? Do you have fibro or did it just help with your pelvic floor pain? Lyrica was like a miracle drug for the fibro, unfortunately too many side affects that I couldn't deal with but it did nothing for the pelvic floor pain and Dr Moldwin send it was the best one for nerve pain.

Tuckersmom
01-17-2010, 03:28 PM
I don't have Fibro. I have arthritis in my neck that has caused a vertebrae to move forward, which is causing a pinched nerve. I also have arthritis in the basal joint of both thumbs, and have pain in my hips and legs so bad that it keeps me from sleeping or forces me out of bed. The IC symptom that has been the most consistent and problematic for me for the last 22 years has been urethral burning. Savella worked for each and every one of these.

mouse
01-28-2010, 12:30 PM
Does anyone know if savella helps with frequency.....i am so sick of this gotta go feeling along with the pain!!!!

Tuckersmom
01-28-2010, 02:01 PM
Yes, that was a pleasant surprise. No more up and down all night long. Knocked it down from 3 - 5 times per night to only 1 or 2.

mouse
01-28-2010, 04:03 PM
Wow I would love that. I don't have too much of a problem at night because I take enough pills to knock out a horse but during the day ....Oh dear god the constant false sensation to pee drives me nuts. Did you have any vaginal or urethral pain?? I was wondering if it may also help with that.

Tuckersmom
01-28-2010, 04:12 PM
No vaginal or urethral pain, unless urethral burning counts as pain. Savella blocks the pain receptors in the brain, so I would think it would help with pain in any part of your body.

mouse
01-28-2010, 04:28 PM
I'll count it as pain....Did it help? My urethra often feel like a rod is being shoved up it.....Very Pleasant

Tuckersmom
01-29-2010, 03:29 PM
Yes, the Savella made me feel like a new woman. After so much pain for so long, finally something that helps it all.

Charisse
01-29-2010, 04:00 PM
This sounds like a promising drug. I will probably try it at some point this year once I'm done with breastfeeding.

mouse
01-29-2010, 04:10 PM
Thanks tuckersmom for the input. I will probably start it sometime next week. I just have to ween off zoloft first. Was it hard to adjust to the savella. i heard you can get really sick in the begining and I don't know if you deal with any anxiety but if you do did it help that?

Tuckersmom
01-30-2010, 02:52 PM
I didn't have any side effects whatsoever. Started with the titration pack 12.5 mgs BID, then 25 mgs BID, then 50 mgs. BID. If you start at a higher dose I think you would be more likely to experience negative symptoms.

mouse
01-30-2010, 04:10 PM
okay thanks. Yes my doctor gave me the starter pack where you start at 12.5mg and progress over the next week. My only concern is if I develope urine retention on it I know you have to ween yourself off and I don't think I could stand to do that while I am retaining!

Tuckersmom
01-30-2010, 04:36 PM
My doctor said that I didn't have to wean off the Savella because I had only used it for a little over a month. And I had no retention issues with this medication whatsoever.

JennyBird
02-22-2010, 09:23 AM
My doctor just perscribed this medicine for me, and you all have answered all my questions. Glad I found this post!! I'm still a nervous about the nausea side effect, but maybe I'll start over the weekend just in case. thanks!!

Charisse
02-22-2010, 10:01 AM
Please let us know what your starting dose is and how it works for you. I have still yet to try Savella but am keeping it in mind if I ever wean my daughter LOL.

JennyBird
04-29-2010, 04:26 AM
I wanted to wait until i had been on savella for a bit before posting my progress. You start our with what they call at triation pack. you start w/ 12.5mg the first day, then 12.5mg 2x's for 3 days, then 25mg for the remainder of the first week. Then the second week you try 50mg 2x's a day, which the the recommended dosage. I had some nausea for a few weeks-it's better to take w/ a meal, and my sleep patterns were a bit off-but they have regulated now. It causes dry mouth and constipation-but most meds do this. The biggest side effect with me is it makes me more heat sensitive-so I feel like I'm having hot flashes sometimes. I can deal with that though.

I've been taking savella for just about 2 months now, and I'm happy to say that my fibro-related muscle/join aches were better within the first week, and my bladder/urethra pain has subsided significantly after about the first month! I had been taking flomax and detrol for spasms every day for the past 3 years, getting bladder instills, physical therapy, etc... and I'd still have some degree of pain at all times, and flares once a month or so. Since being on savella, I haven't had a bladder instill and I've been able to cut back taking the flomax. I still need to take the detrol-but I'm hopeful that i can wean off eventually. I also have alot of stress with my 2 hour each way commute and job-but the savella actually has calmed me down a bit and things seem to be rolling off my shoulders easier than before-and I'm not dwelling on things unessisarily. i think this is helping my pelvic floor spasms calm down, since my body isn't as tense all the time. The only symptom I've noticed that hasn't improved is my vaginal itching. I'm hoping that may improve the longer I take the savella.

In any case-it really seems to be working for me. I'm feeling so much better than I have in over 3 years!!

Charisse
04-29-2010, 05:07 AM
I'm really glad it's working so well for you! Can I ask if you'd ever taken any anti-depressants in the past? I've tried many different classes of anti-depressants and never was able to get past the side effects of them. I understand Savella is an entirely different class though. My drs want me to try Lyrica first and if that doesn't work than I will try Savella. I hope you continue to feel even better as the days go on :)

JennyBird
04-29-2010, 07:31 AM
i've never tried any other anti-depressants before. I think Lyrica is slightly different than Savella. Savella is the same class as Cymbalta though. I had a little trouble adjusting with the side effects the first few weeks, but they got better after taking the medicine longer.

Hope something works out for you!!

JennyBird
06-25-2010, 02:32 PM
I wanted to update everyone on my progress with Savella. While it works great, the longer I took it, the worse my nausea and stomach pains became. I had to stay home from work a few days b/c of it, so the doctor cut back my dose to 25mg 2x's a day. The stomach pains were much better, but my fibro pain did come back a bit. I'm now switching to Cymbalta gradually, and we're going to see how that works. It's supposed to be simliar to Savella.

I'll keep everyone updated on my progress. Hope this helps!

sailawaygrl
06-27-2010, 04:50 PM
Hi everyone,
I justed wanted to add to this discussion my results with cymbalta. I have been taking it for months now at 60mgs a day. I started at 30mg daily and immediately noticed relief in my fibro pain. After a month at 30mgs I noticed it wasn't working as well so we upped my dose to 60mg. Last month I had a terrible month of flares and pain, three times thinking I had infections. I realize now that I was getting a bit too brave with my eating since I was feeling better. When I did that I did notice that I started having retention with the cymbalta, not sure if it was the med or just my flare. I have never been nauseas from taking it at all. I am much more sensitive to the heat and I am having night sweats (could be other meds too though) I thought I wanted off of cymbalta so I reduced the med (with my Drs approval) and then stopped all together. That is when I fully realized how much it was helping my IC, within a day of stopping I was up ALL night and running to the bathroom all day. Lots of pain and my lower back pain came back with a vengeance! I am now back on the cymbalta and we are increasing my to 120mgs a day. So far I seem to be doing ok with it. The worst part that I see is the heat sensitivity, living in the south is terrible with that!!!

I just wanted to add this to let any of you that might not be able to adjust to the savella, that perhaps cymbalta might work for you. Also I did try lyrica once in the past but had terrible nightmares. I do notice vivid dreams with the cymbalta but they are happy dreams. Those I can handle!

JennyBird
06-28-2010, 03:48 AM
I'm also having trouble with hot flashes and sweating with the Savella/Cymbalta-it got a little better when i dropped from 100mg down to 50mg.

Last week i just added 10mg Cymbalta to my current 50mg of Savella, but this weekend I cut back the Savella and upped the Cymbalta, and now I'm having bladder pain and am noticing retention already. I'm going to give it a couple more weeks to adjust, but I may just stay on the Savella-at least it was working really well for my IC.

So frustrating!

sailawaygrl
06-28-2010, 07:51 AM
My Dr explained to me why the Cymbalta can give you retention or a feeling of having to go. I can't relate it correctly but the gist of it is that it stimulates what I would guess is a sphincter making it contract somewhat. I think for some people it is too much if they are already inclined to that type of problem. I know that when I had the flare that kicked in horribly. I still feel the little twinge all the time but the alternative is much worse to me.

On a good note: I bought new bedding yesterday and had a wonderful night of sleep without waking up soaking wet for the first time in a while!!! YEAH!!

JennyBird
06-28-2010, 10:53 AM
that's not good about the muscle spasms! I'm wondering if I should give the cymbalta another week or so, or just go back to the savella.

Great news about getting a good nights sleep without nigh sweats! yay!!

sailawaygrl
06-28-2010, 04:55 PM
Oh please don't take my possibly bad interpretation to make a decision like that. If you are not having any problems then don't do anything that might set you back. Ask your Dr if they know about that. Mine explained it to me when I told him that I had a "slight" twinge of urgency with it. He seemed to be fine as long as I was able to start my stream, I do notice that it isn't as strong now but that has been up and down since I have had IC. But I used to have an extremely strong stream (probably TMI but my husband used to call me a speed peeer!)

Yes it was such a peaceful night, I am praying for another one tonight!!

JennyBird
06-29-2010, 04:13 AM
Don't worry!! The only reason I might go back to Savella is b/c I wasn't having that (what I call) "pinching" feeling on the Savella. It only happened when I upped my dose of Cymbalta over the weekend, and it's very uncomfortable since being on the Savella, I got used to not having the pinching-finally!! I'm feeling better this morning, and just took the Cymbalta, so if it happens again this afternoon, I'll know it's that and not just something I ate or did. Such trial and error with these medicines.

sailawaygrl
06-29-2010, 06:08 PM
Please let me know if you notice a difference. I know what you mean by the pinching feeling. I get that mildly but it seems to be subsiding now. If it does get too bothersome I might ask to try the Savella. Do you feel it is helping your fibro well? I know that when I cut back on the cymbalta I noticed the all over aches increasing rapidly.

JennyBird
06-30-2010, 03:05 AM
I couldn't stand the pinching anymore, so I am weaning back on the Savella starting today. I already notice a difference!

The Savella seems to work for me, but does have some annoying side effects, hot flases and nasuea, and upset stomach. I was on 100mg origionally, and they were really bad, then cut back to 50mg and the side effects are minor now. When I first cut back, my fibro pain came back in a rush. After about 2 weeks I guess I got regulated and it went away again. It also seems to allow my bladder relase everything, so when I go I go a ton, but no retention problems.

I'm trying to cut back on my spasms meds (detrol and flomax) so having less retention/muscle problems with the savella vs the cymbalta is going to help me better achieve that goal.

cat55
08-08-2010, 02:19 PM
Skeetor, I also have Fibromyalgia and IC. My Rhumatologist started my on the starter pack of Savella and I started having horrible headaches and nausea after only 3 days. I currently am taking 3 Norco/day for the fibro pain. Seems to be the only thing that doesn't make me nausous. Just had a Cystoscopy for IC and can't seem to take the Enablex, or the Cipro Antibiotic without getting a headache and sick to my stomach. I'm feeling so hopeless because every med they prescribe makes me sick. I was started on Elmiron 100mg 3/day a few months ago and quit after 3wks because of side effects. I don't know what to try next??

JennyBird
08-09-2010, 03:32 AM
I have alot of problems with nausea/stomach issues from medications as well. It's a bit of trial and error. For the savella, I had nausea right away, and I started taking with meals. I was better until I upped my dose to 100mg, 50mg 2x's a day. I cut back to 50mg, 25mg 2x's a day, and I've been much better. still taking with meals. there are some other options similiar to Savella, Cymbalta is very simliar, and Lyrica is a bit different but also is approved to treat fibro.

There are also a ton of bladder spasm meds on the market. I take detrol LA, but I have to take it at night or else it gives me diarrhea. There is vesicare, toviaz, and even gelnique that's a gel you put on your skin. the gel may work for you since you don't take it orally.

Most antibiotics have stomach side effects. Probiotics can help with this. I take Flora Q, but there are many on the market. The antibiotic kills all the bacteria in your stomach, but you need some good bacteria to balance out. So, the probitoic gives some of the good bacteria back, and less stomach pain.

Hope this helps! You really have to experiment with times of day, w/ or w/o meals, etc... with the medications. I also woudln't try too many new meds at a time. You won't know which is bothering you if they are started too close together.

**adding comment**
also, are you getting bladder instillations? I can't take Elmiron either, but I get bladder instillations done for the IC. It goes right to your bladder instead of your whole system, so they side effects are minimal, and I've never had any stomach problems form the instills.

cat55
08-09-2010, 06:38 PM
Thanks JennyBird, I have an appt. with the Urologist on the 19th to discuss my options. I might try the Savella again with meals and not try anything else at the same time. After my cystoscopy they gave my fintanel before I was released. I'm wondering if that is what gave me the headache and not the other meds.
How often do you get bladder instillations? Do they help? and how long do you feel better after getting one?
Has anyone tried the cystoprotek? I purchased it and took it for a few days and it seems that my fibro pain was worse. I noticed it has Glucosamine in it and I think I have tried that before with the same effect. Has anyone else had this problem with the cystoprotek?

JennyBird
08-10-2010, 06:48 AM
I hope you are able to take the Savella on a full stomach, it's really helped me. Even with the smaller does of 25mg 2x's a day. It's really important to only try one new med at a time, you just never know what is causing the side effects.

I do bladder instills on average about once a month. When I'm in a flare, I do the instills 3 times a week for a couple weeks. I used to go into the doctors office, but now do them at home. I empty my bladder, then with a catheter put in a mix of heparin, lidocaine, sodium bicarb, and gyntamycin (antibiotic). I hold it in as long as I can, usually about 3 hours, then pee it out. Your urologist should be able to do these if you have IC. When I'm in a bad flare, and if I don't feel better in a week or so, then I go into the doctor's office and get the same instillation with and added steriod, which really kicks the flare out of my system.

I bought cystroprotek, but coudln't take it b/c it contained shellfish (I have an allergy). Sorry, I don't know much about it since I couldn't take it. I did take Desert Harvest Aloe Vera for a while though. It's a diuretic though, and I had to stop when i started the Savella, just too much for my system and IBS!

Hope this helps!!

outbackdogs
08-12-2010, 06:12 AM
Unfortunately for me, within 4 days on the Savella I developed a systemic rash covering 80% of my body & started wheezing; went immediately to my DR & he put me on an IV cocktail for about 2 hours, & nebulizer, the rash & wheezing were gone after about an hour, scary stuff for me at least.
So I'm back to Elavil, Mobic, Xanax, & Zanaflex for muscle spasms, soreness & that pinching feeling, which only helps somewhat.
Elmiron has lessened my IC flare ups, but not enough to not to be ruled by it some days.
For the Vulvadynia so far haven't found RX's that have helped.

JennyBird
08-12-2010, 07:26 AM
oh my-it sounds like you have a bad allergy to Savella! Have you tried Lyrica? it's for fibro, but different from cymbalta and Savella.

I'm glad you can take Elmiron, i can't take it. it caused esphogus spasms and i felt like I had the flu-was confimed to bed. also caused anxiety and couldn't sleep even though I had no energy. The savella helps with the bladder pain, and i take urelle for pain when needed. Also detrol and flomax for bladder and urethra spasms.

For the VV, I use a steriord cream, nystatin (anti-fungal) cream, and an estrogen cream. The estrogen cream is mixed at a special pharmacy, but has reallly helped. Also use vallium vagionally to calm spasms from time to time.

Hope you can try some of these and they help!! :smile tee

outbackdogs
08-13-2010, 04:51 AM
Lyrica made me extremely talkative & hyper, the only problem is that that is my personality so it made it worse.
I have spoken to my gyno about the valium suppositories, which she doesn'r know much about, so I just printed out a bunch of posts from this site to educate her, hopefully she will prescribe it, my Uro/Gyno will not, because to him its not 'protocol', he just upped mt Elavil & Neurontin to no avail.

cat55
08-13-2010, 01:57 PM
I didn't realize that Aloe Vera was a diaretic. I take 4/day plus a perscription diaretic for high blood pressure. I was wondering if anyone had tried Lecithin, I tried it for high cholestoral because I don't want to take a statin. I think the Lecithin made me feel nausous, would Lecithin iritate the bladdar?

JennyBird
08-17-2010, 03:49 AM
outbackdogs-that stinks that you are having so much trouble with the side effects of the fibro meds. For the vallium, I just use a 5mg actual vallium pill vagionally and it dissolves on it's own. I don't have a suppository mixed, just the actual pill. Although, it has to be brand-name b/c the generic doesn't melt enough. Hope this helps!

cat55-I'm not sure if aloe is actually a diuretic, but I have IBS and it really bothers my stomach and causes me to have loose stools. It was manageable until i went on savella, which really messes with your stomach. I had to cut out the aloe, and my stomach could deal better with the savella. This is just me though-may be different for others.

ICNDonna
08-17-2010, 05:17 AM
Precaution: It is never a good idea to change the route of a medication without first talking with your physician. Donna

cat55
08-23-2010, 05:59 PM
Maybe that is why the Savella made me so nausous, I was taking 4 aloe vera caps/day. I stopped taking them and I think my stomach is better. I am slowly cutting my pain meds in half. only talk 1/2 a norco every 6 hrs instead of a whole one. I want to get some of these meds out of my system and try savella again. My Rhumy said that if I only take 50 mg of Zoloft it should be ok to start the Savella. From what I'm reading from other people their Dr. said to get off of it first?

JennyBird
08-24-2010, 03:50 AM
my stomach felt much better when I stopped the aloe, but I still had to cut back to 25mg 2x's a day. My doc said Savella is very hard on the stomach, most patients have this problem.