A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain
savella experiences
hey everyone! i've been on savella since it became available in the US, and as usual, i'm having really strange reactions to it. i've been having these terrible mood swings where i get really mean (VERY unlike me--i am NEVER mean, even when i want to be--lol) and these weird paranoia attacks that come out of nowhere & make me react very strangely to people/situations. it's gotten me into some trouble with family/friends. my depression has taken a bit darker turn at times, too.
so...what have been ur reactions to savella? how did u go off of it, or how r u managing the side-effects? if u went off of it, what did u replace it with (besides cymbalta)?
so...what have been ur reactions to savella? how did u go off of it, or how r u managing the side-effects? if u went off of it, what did u replace it with (besides cymbalta)?
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Replies to This Discussion
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Permalink Reply by Rick on -
Hey Erin. My rheumatologist recently put me on Savella and I'm pretty sure I had a bad reaction to it. He gave me a starter pack, and by the second week, I felt like I had been hit by a freight train. I was so exhausted and slept for the majority of two days straight. I called him in a panic and he told me to stop. It was disappointing because of course I had placed such high hopes in the new drug. I was also on amitriptyline at the time, which I am still on now. I think it helps a little, especially with sleep.
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Permalink Reply by Erin on -
i know what u mean about the disappointment. i try very hard not to get my hopes up too much, but it's always a bummer when something doesn't help or u can't tolerate it enough to be worth taking it. i'm glad something helps at least a little, especially with sleep. sleep is a huge issue for me as well, and i have never been able to get it under control, especially since my crazy college schedule.
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Permalink Reply by brian armstrong on -
hi again I had the same reaction , clonozapam is the only thing that has kept me reasonably sane for the past 20 years , very little side effects except like any drug for a long period of time you can become dependent on . I was ready to do myself in bcause of the anxiety and all the horrible pain and other symptoms, but these pills helped me cope. I have been to over 40 naturepathic doctors and clinics and the only doctor that told me the truth was that the good news you wont die from this but the bad news is somedays you wish you would. sleep is sure important and i am sure all you guys can get though the day better if you have a good night , but they are rare, I am glad amitriptyline has helped you , didnt work for me.
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Permalink Reply by Joel on -
Hi Erin, I'm going to be stopping my cymbalta in a few days and starting Savella, hopefully I will not have those mood swings. I have those swings already when I'm in a lot of pain and have the fibro fog. I don;t want to be around people because I'm afraid of what I might say or do, so I withdrawal and my depression gets worse.
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Permalink Reply by Erin on
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i really hope u tolerate it well and that it helps u. yea, i know what u mean about the pain/fibro fog and retreating from social situations because of it. it's very hard to follow conversations for me sometimes, and i react slowly/strangely and it can make me self-conscious. i hardly feel myself when really affected by it. it's very frustrating, and the loneliness doesn't help.
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Permalink Reply by Sweet Lady Green Eyes on
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Savella made me so sick I couldn't get out of bed. I started with the titration pack, and by the time I 'd reached the full dosage, I couldn't stand up with out feeling as though I was going to be sick. All I wanted to do was sleep. I had no appitite, although you are supposed to eat when you take it. I had to force meyself to eat, then felt like it was all coming back! Yet another of the "Miracle Drugs" that didn't work for me!
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Permalink Reply by mary on
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Erin,
How long have you been on this? Did you replace it for something that you stopped taking? Which other meds are you taking? Have you had any beneficial effects from the medicine?
According to several sources the reason that you should not stop taking these medications suddenly is because of our neurochemical feedback system. As I am sure you know, these medications do not provide us with more neurotransmitters or stimulate us to make more. They only allow the neurotransmitter to remain in the synapse longer before it is cleared out of the way. This can help us tremendously in the short run. But, like I said, according to many it can disrupt the feedback system. Because the neurotransmitters remain in the synapse, the message is relayed to the part of the system that creates and releases it, that there is already enough and it does not need to make more right now. Over long periods of time, that could eventually (theoretically) leave you to produce less and less of the neurotransmitter, possibly to the point of almost having none. Seeing as that the very lack of enough of that transmitter is presumably there to help you overcome, the irony is obvious. Luckily, many people are able to easily quit or change medications. Others are not so fortunate. I personally suspect that has to do with the length of time they were on them, what there over health and symptoms were before beginning them. I have been on antidepressants for most of the last 20 years. And, when I have tried to go off, well, I can't really describe the misery it caused me. When I am on the medication, I feel as if I could not possibly survive being anymore sick than I am and that surely the medication is of no benefit. But then when I try to go off, I see the incredible impact it is having daily.
Anyway, as far as getting off of medications, which varies from person to person and drug to drug, I am sure you have already been told that it is necessary to wean off slowly so your system doesn't suddenly get a tremendous jolt because of the sudden (and now increased) lack of neurotransmitter. Hopefully when you taper off slowly it gives the feedback system time to adjust and realize it needs to produce more.
One way that I plan on trying in getting off of the meds in the future (I will not try until my children are both grown and out of the house because I will not let them experience my withdrawal again ever) is to attempt to increase my neurotransmitter output from diet nutritional supplements. These would especially include amino acids and the other necessary ingredient your body needs in order to create them. I would do this in my case for a long time before I attempted to taper my medication. There are various types of doctors that help people with this and that try to treat the problems the drugs were used for in that way in the first place. Many claim success, but I certainly cannot say if it would work. It can actually be very complicated to determine which chemicals need to be increased in your body. And it is not all about the amount of a certain chemical, but rather the proper ratio between them is super important. The other complication is that some peoples problem could lie in the ability to synthesize the neurotransmitters (and or other necessary life components) from the raw materials provided in the diet. Or a person could have a malabsorption illness which prevents the ingested nutrients from being usable (an example would be celiac) This may or may not help people but I can't stop thinking that we should all, when possible, be taking precautions against the depletion of known nutrients that become depleted from the specific drugs we take at the least. Unfortunately, I have not done this lately. Beside lack of money, I already have such a difficult time managing taking my prescribed meds. I've so gotta get control. Somehow.
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Permalink Reply by Erin on
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i've been on savella since late march. i have not felt any pain relief, nor have i noticed any help with my mood. a new doctor i just saw (since i just moved here) said i should go off of it. she told me to half it for a week, and then stop it. i have tapered more slowly, and should be off it completely next week. i asked her if i should take something in place of it. she said she didn't want to change too much right away, and told me to take amytriptaline. i've been on that in the past with no help, and it hasn't done a thing for me yet. i don't know if it'll be sufficient, but i'm guessing it won't be. i'm not sure what to do. i don't have a doctor here i trust yet, and she was really mean to me. i don't plan on seeing her again, but i don't know who to see. i was told she treated fibro, but of course she tells me she doesn't and will not even attempt to.
so, i'm not sure what to do. being on savella, i was very close to admitting myself to the psych ward, but i know i couldn't take those crazy medical bills right now. going off of it worried me, too, as i have experienced horrible withdrawals in the past left me in a very bad situation, too. i don't know what to do. do u have any local doctors that u trust? i really need a recommendation. all the others i got r either no longer practicing, or cannot take new patients. i need someone to oversee this transition, b/c based on my history, it's never simple or even very safe.
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Permalink Reply by mary on
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Erin, I am sorry about the doctor and her attitude. I have dealt with so many of them over the years. I do have a doctor to suggest for you. He is an endocrinologist and his office is in Sandy Springs. I have been going to him since, well almost a year now I think? He is of the age that he could easily retire but instead has opened up a practice to run how he wants. I am pretty sure he does not file insurance or is on any plan (they will give you a bill for you to give to your company if you want). That is a negative for people with insurance (I haven't had any for a while now) as far as cost and convenience. However, I have yet to find a really good doctor for this who does seeing as how many potential treatments are out of the norm and also they are not allowed the time the need to truly listen to and search for answers for complex needs like ours. You do get several advantages from this type of doctor/ system. One is time. His first appointments are at least an hour long. He let me explain everything I wanted to and that is a whole heck of a lot. I think appointments after this are around 30 or 45 min., not sure, but I have never felt rushed or pushed out the door, etc. Also, he works mainly with people like us so he has heard it before from lots of people. He knows it is complex and multifaceted and doesn't make you focus on only one symptom at a time. He automatically assumes that what you say is true and takes it seriously. There is no need to "convince" him that your symptoms are real and important. He conveys a sense of empathy, which I find so relieving and comforting after all the miserable doctor's appointments I've had. That alone is worth considering him as a doctor.
I will also note that he has treated me for such multiple illnesses as Depression, ADD, Anxiety, Atypical Celiac Disease, Fibromyalgia, Chronic Sinusitis / Rhinitis, IBS, Migraines, Myofascial Pain Syndrome, PMS, Possible PCOS, and other ones I can't think of that are related to this whole annoying lack of good health we experience. There are additional doctors I would go to if I had money, but I don't and I basically have been using him for all areas of my health except for pap smears. Incidently, my Gynocologist is the one that refered him to me because he had heard him talk and though he might have luck helping me where the Gyn was failing inspite of trying. He has a nutrional/ herbalist? specialist that works conjuction to him and also two Chiropractors that have been massage thereapists for many years prior to that. I went to one for five visits. It was helpful, but I can't continue because of money. The other one is hard to get a visit with because she has so many loyal customers. She is the one who trained the one I saw in certain areas. I used to be a massage therapist and in my opinion the relieve gained in a session is usually very temporary in people with long standing multifaceted pain problems. I do however believe that done long term that it is capable of relieving significant pain and stress and that it's effect can be accumulative. I have found it much better that pills, especially at relieving pain, but can't afford the amount and duration of treatment that I need.
There is even more I could tell you, but just let me know anything else you want to know. You deserve to be taken seriously by some doctor. I recently went my sister to a doctors appointment with a rheumatolist. (She is just as sick as me, but has no diagnosis). I wanted to hit the doctor because she was dense. She just could not grasp the severity of the situation (until a made her face it) and even then her attitude was so stupid. OH, and I asked her a question about myofascial trigger points verses tender points and well I wont get into it, but it infuriated me. I will blog about it sometime because I think that several people on here are unclear about this and rightly so because of the lack of doctors who have a clue themselves.
The doctors name is Henry K Delcher, MD and his # is 404-943-0328. I can also provide you with more details about his treatment methods and so forth before you decide to see him. That is probably easier done in person or on the phone though because it is so much to type. Just let me know if you want to know more. Also, I hope you come to the group this month, I plan to be there, God willing. The members there also have suggestions on doctors to see. Was I at the meeting you came to?
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Permalink Reply by Denise Riek-Slagle on
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I have been on cymbalta, lyrica and now savella....I have to say that savella has been the most beneficial to me. When I began the starter pack, I did notice some irritabilty but after starting taking regular doses, that all went away. I'm currently not having huge side effects. Unlike lyrica, in which, I gain excessive amount weight and with everything I tried had a difficult time lossing it. Personally I know that I get irritable due to the frustration of not being able to do the things I use to do....even the everyday chores; and the fact that I'm not always getting proper sleep. It's hard to make people realize that you have a medical condition when you physically look "OK". About a year ago I attend a stress/pain managment class based on relaxation methods; this was very helpful but you need to be open minded. The classes when over mediatation, yoga, visual conception and we discussed looking outside of the box on certian situations. My personal opinion is that you need to find a doctor that is willing to help you and have the knowledge to other medications and treatments to get you on the right track. Due to the fact I was originally misdiagnoised, I started a diary of how I felt every day, even wrote down every little odd issue in my life...this diary helped my doctor out and soon I was on the right track. Perhaps making a diary and researching for a new doctor might be the right choice for you. Have you checked to see if there is a FM group in your area?
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Permalink Reply by Reverend Kurt fondriest on -
Hi
Erin , I have been thinking about savella. I have been on cymbalta for sometime, however the side effects I read sound horrible. I think I'll just stick w/cymbalta:)
Kurt
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