Anyone taken Savella?
Posted by Keebler (Member # 12673) on :
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It's only been approved by the FDA for a couple months but the company did not like the appearance of the pills so the release date was delayed to "mid-2009" -- if it is on the market yet, there has not been much time for anyone to try it.
You might call your local FM support group and see of anyone there has taken it or has studied it.
This can raise liver enzymes, etc. so be sure to scroll down and read the cautions and contraindications so that you can discuss those with your LLMD first to be sure this will not interfere with treatment for lyme or other tick-borne infections.
Savella (milnacipran HCl) is a prescription medicine recently approved by the Food and Drug Administration (FDA) for the management of fibromyalgia -- a chronic condition characterized by widespread pain and tenderness.
If you have certain conditions, you may need a dose adjustment or special tests to safely take this medication. Before you take Savella, tell your doctor if you have:
. liver or kidney disease;
. heart disease, high blood pressure, heart rhythm disorder;
. seizures or epilepsy;
. glaucoma;
. a bleeding or blood clotting disorder such as hemophilia;
. enlarged prostate, urination problems;
. bipolar disorder (manic depression);
. a history of heavy alcohol use;
. a history of suicidal thoughts or actions; or
. if you are allergic to aspirin or yellow food dye.
You may have thoughts about suicide while taking Savella, especially if you are younger than 24 years old. Tell your doctor if you have new or worsening depression or suicidal thoughts during the first several weeks of treatment, or whenever your dose is changed.
. . .
Older adults may be more sensitive to the side effects of this medication.
Do not give Savella to anyone younger than 17 years old without the advice of a doctor.
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[ 05-17-2009, 03:54 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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Treating the underlying infection(s) will often help "fibromyalgia" lift away.
Along the way, Magnesium and Fish oil are two supplements that help many with the fibro/muscle pain and insomnia. Malic Acid can also be very helpful.
More about that, and other advice specifically for lyme patients, can be found in these two sources:
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This book, by an ILADS member LLMD, holds great information about treatments options and support measures (including things that can help lessen fibro/muscle pain):
d-Ribose is also another supplement that has been very helpful to lift some "fibromyalgia" symptoms for lyme patients.
SAMe, too.
you can read more about those at www.vrp.com - upper right hand corner, pull down from the product search for "article" search - they have a wonderful library.
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Posted by sammy (Member # 13952) on :
Hi Jen, I have not taken Savella but if I had fibromyalgia like symptoms I would seriously consider trying it.
I actually just learned about Savella this week. From what i've heard and read, it sounds like a promising new medication.
Savella is an SNRI (Serotonin and Norepinephrine Reuptake Inhibitor) but it works in a different manner than the others in this class. It works more on the Norepinephrine receptor sites where other SNRI's have more effect on the Serotonin receptor sites.
Because of this, Savella has a more pronounced effect in relieving the pain and fatigue of Fibromyalgia. Where other SNRI's like Cymbalta are primarily used to treat depression (with some associated pain and fatigue).
Interesting isn't it? You should definitely read up on it yourself. If you decide to try it, let us know how you do. My mom has fibromyalgia so i'm interested in hearing more real world experiences with it.
Posted by Keebler (Member # 12673) on :
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Sammy,
Has your mother been evaluated for lyme and other tick-borne infections?
Many people who have been (mis)diagnosed with fibromyalgia have been found to actually have lyme or other chronic stealth infections such as Cpn or HHV-6.
More about those here:
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In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
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Posted by Keebler (Member # 12673) on :
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My concern is that this drug can can some serious side effects and also be hard on the liver, and still not address the CAUSE.
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TerryK wrote this at another thread:
posted 14 May, 2009 09:35 PM
Lyme induced fibro should always be treated as an active infection. The Steerites who say you have lyme induced fibro and there is nothing that can be done to help your symptoms do not believe in chronic lyme disease.
I had overall body wracking pain for a number of years. My pain levels decreased by 70% with IM ceftriaxone. My horrible neuropathy symptoms went away with the first year of lyme treatment. I've heard plenty of other people who got the same results.
I know someone who was treated with the standard IDSA short term abx for lyme after which she was told personally by Steere that she had lyme induced fibro and would have to live with it.
Fast forward. After 20 years of horrific suffering and almost bedridden she embarked on lyme treatment again. She is almost completely well now. This is not an unusual story at all.
Terry
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Posted by sammy (Member # 13952) on :
Hey Keebler, my mom has not been tested for Lyme and Co's. She has MS, fibromyalgia, and hx of CFS. At this point we are just trying to manage symptoms.
I highly suspect that she may have some sort of chronic infection if not Lyme too. Hopefully as I get better I will be able to help her financially and logistically to get to a doctor and be treated appropriately.
As of now it is out of reach financially. Her PCP is old school, not willing to test for anything, not willing to try the CPN protocol for MS. Also not willing to try LDN for MS. Frustrates me to no end! I just hope and pray that she remains stable until I am able to help more.
Thanks for asking and thanks for caring Keebler. Your post are always so helpful.
Posted by Keebler (Member # 12673) on :
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Sammy,
where does your mom live (if you don't mind saying)? There are some LLMDs or other doctors who can also assess mycoplasma or Cpn who do take insurance. They are rare but there are some.
Keebler, you are an amazing gem! I don't know how you are able to keep your good spirits and be so helpful to everyone, given your own personal situation. We're lucky to have you on this board.
Sammy, yes, there are lots of low cost avenues to try for your mom, with garlic, herbs, rife, LLMD's who take insurance, etc. among them. Where there's a will, there's a way.
And don't forget Candida with your mom; I've found that to be a big factor often with MS, etc. And diet and supplements to kill the Candida, and probiotics will go a long way there.
Posted by blair33 (Member # 20311) on :
I'm on the 5th day of savella and at a 1/2 dose.
I'm feeling some relief from pain already, but the ringing in my left ear is getting louder and feeling some pressure in it.
I don't know if they are related, but it started getting louder yesterday after moving up to 1/2 a dose.
Posted by Keebler (Member # 12673) on :
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Rumi,
Thanks. Well with the lawn crew here all day and a house behind me getting a new roof, I'm stuck in my closet today. I really do need to replace my computer in here with a bed or hot tub.
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Blair: about tinnitus . . . .
I've not studied this drug regarding tinnitus (ringing in the ear) but, generally, the advice from my ear experts is that anytime a drug causes or increases tinnitus to stop the drug right away.
Now, you may not have the ear history that I do but I also want to help prevent others from having these ear symptoms turn chronic.
Look up on your information page and see if tinnitus is a side-effect.
Normally, taking NAC (N-Acetyl Cysteine) and B-6, tinnitus can be lessesd. If the tinnitus has to do with the added toxins the liver has to process, the NAC should help. If it has to do with a neuro thing, B-6 may help.
Tinnitus can be a sign of damage to the ear nerve or brain neurotransmitters causing too much neuro-excitability.
What is the current dose and type of magnesium you are taking?
You may need more and you may need a more bio-available type. Magnesium is vital to address all ear issues.
Fish oil, too.
It may seem to be overreacting but the ears tell us a lot. Anything that compromises the ears can not only indicate that our toxic load is too much but also that damage could set in - and damage to the ear in any way can also affect every function of the body.
If the ears have damage it can be hard to read, think, walk and talk. So, please monitor the tinnitus very carefully and do all you can to lessen it.
Sometimes, if a drug has damaged the ears and the drug is stopped, the ears can repair. It may take time but sometimes, too, damage (or tinnitus, hyperacusis) can be permanent.
Please be very careful with this. Tinnitus can ruin a life and, on top of lyme, it can be much more difficult.
I do hope this is just a passing thing and really don't mean to alarm you. But, had I known then what I know now, I would not have tried so hard to stay on certain meds years ago. Effexor was the drug that really ruined my ears. There were others, and of course lyme affects ears, too, so we have to be extra careful.
Again, my ear expert would say to STOP any drug that causes tinnitus. If you continue, please take precautions listed above. They may or may not help but, at this time, it's all there is as far as any chance of ear protection.
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Posted by Keebler (Member # 12673) on :
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Okay,
I did a search on "Savella, tinnitus" and, yes, some hits pop up. I also came across a blurb on Pro-Health's site where someone says this has helped her so much.
So . . . is there anything ELSE you are doing that, if stopped, may stop the tinnitus?
Aspirin, over exerting yourself, aspartame, msg, too much noise, headphones, caffeine . . . .??
be sure to wear ear plugs even with a hair dryer and vacuum, blender, etc. avoid headphones . . .
I'll look into this a little more later. gotta get a nap.;
in the meantime, you can look up the American Tinnitus Association and contact them about this drug. Although it is so new, they may still have some information.
Contact ATA with your questions and comments - Monday through Friday from 8:30 a.m. to 4:30 p.m. Pacific Standard Time (PST). Best through phone or email.
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Posted by blair33 (Member # 20311) on :
Hi Keebler, i haven't been doing any of the things you listed but i have taken a robaxin muscle relaxent mid-day for the last 3 days. It really helps my abdominal pains.
I looked for interactions with robaxin before taking it and only found drowsiness.
My llmd said to reduce the dosage of savella and take once a day.
I take 200mg of amino acid chelated magnesium twice a day. I ran out of fish oil 4 days ago.
I called the ATA and they are sending info.
I'm supposed to start biaxin in 2 weeks but i've read they are problems with that and tinnitus.
Thanks for all your help!
Posted by Keebler (Member # 12673) on :
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Blair,
I doubt the ATA will send you material specifically on Savella.
I had hoped they could tell you over the phone if they've had any reports about it. It's just too new for much to be published yet but many patients keep in touch with the ATA regarding their experiences.
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Hope that gets better. I don't see any liver support listed for you.
Liver support - and adrenal support - can help reduce tinnitus.
The NAC would be my first choice. Milk Thistle is also good. For adrenals, I'd start with Cordyceps. Be sure to ask your LLMD before taking any of that, though.
More about that here (although NAC is discussed in the Tinnitus thread above, not in this book):
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This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008)
Four pages
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Posted by jentytib (Member # 14375) on :
So I am on my 4th day of Savella. This is only 25mgs morning and evening. One is supposed to work up after 14 days to 50 mgs morning and evening for a total of 100mgs a day.
I think I am going to stop it all together.
I was doing ok, but today I noticed a ton of palpations and yesterday I noticed things going black if I stood up too fast, like a drop in blood pressure. I don't stand up fast by the way.
I am pretty small, 114 pounds, 5'3"
I have not had ANY palpations since prob 3 months into my lyme treatment. My resting heart rate is down for 110 to 60s now.
SOO, I don't want to rock the boat and have cardio problems as a result of a DRUG!
So I am going to stop it.
As far as how I feel, I bet if I had true Fibro, I could see this drug working. But for now, I will not put up with the side effects.
My plan is to go back on zoloft and try Acupuncture this summer with a true Chinese Dr which I have seen before.
Just wanted to give my two cents since many of you have not tried this drug yet.