New med approved for treatment of fibro!

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jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 5/19/2009 7:28 AM (GMT -7)   
Hello family & friends! I was at the rheumy the other day and stubled across some info on a new med that was approved in January for treating fibro. Some of you may have already heard about it.......it is called Savella (generic: milnaciprin) and it seems to hold significant promise for relief. I don't know if it available yet. Here is a link to an article I found on the subject for those who are interested:
 
 
I figure anything that might help any of us feel better is always worth mentioning!
 
Gentlest of hugs,
John
 
 
*****************
John (54)
*****************
Dx'd June 2008 with Fibro, CFS and CEBV (Chronic Epstein-Barr Virus) after many years of ongoing and worsening symptoms......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & migrane/cluster headaches.


Marlee2
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Date Joined Aug 2007
Total Posts : 6067
   Posted 5/19/2009 12:08 PM (GMT -7)   
It was nice of you to pop in to see us John, lol. I hope things have been going well in your life.
 
Yes, I did know this was coming out but I haven't read any post of anyone trying it. I won't be trying it cause of the blood pressure issues, I have enough problems keeping mine down. But it means they are trying to help us.
 
Don't stay away so long we miss you.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
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MEG25801
Regular Member


Date Joined Jun 2008
Total Posts : 204
   Posted 5/19/2009 12:14 PM (GMT -7)   
I have drug reps coming in all the time to get their cars worked on and yes it is out and they have been giving samples to the doctors.  I am with Marlee tho...after reading the warnings and side effects I won't be trying it because of the BP issues and the heart rate.  Mine is already at 90 resting so I definitely don't want it any higher. smhair
 
Missy
Diagnosed with Panic Disorder(16 yrs ago)-GERD(12 years ago)-GAD(16 yrs ago)-IBS(12 years ago)-DDD(6 years ago)-Arthritis(since teenager)-Controled HBP(2 years ago)-Diagnosed with fibromyalgia 9-29-08.
Meds: Cardizem CD~Prilosec~Klonopin(prn)~Daily Vitamin~Tylenol~Lyrica


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 5/19/2009 3:04 PM (GMT -7)   

Hi Marlee & Missy!

Yeah, after reading that article there seems to be quite a few serious risks with this med so whoever tries it should probably be very carefully monitored for adverse reactions which might turn out even worse than the fibro symptoms they are trying to relieve! I would be real curious, though, to hear from anybody who does give it a try and what their experiences are with it.

Marlee, thank you so much for the warm welcome back. It's become a rare occasion that I get to visit here or any website for that matter other than if it's work-related. The economy has taken a huge toll on my workplace so I live with the perpetual "ax of layoff" hanging over me daily as the company struggles through this mess. Things are absolutely crazy and so downright uncertain right now so you can imagine how my fibro is reacting with all the unbelievable stress and tension this is causing. By the time I get home from work the last thing I want to see or touch is a monitor and keyboard! (LOL) Thank God that the atp/glutathione injections are still working so well or I might be trying that Savella stuff myself, despite all the risks, while I still have my insurance intact.

I'll try to drop by and visit more often when I can sweetie......I really miss all of y'all too!!! (If I do get laid off I guess one upside is that I CAN visit more then - lol.)

Gentlest of hugs,

John


*****************
John (54)
*****************
Dx'd June 2008 with Fibro, CFS and CEBV (Chronic Epstein-Barr Virus) after many years of ongoing and worsening symptoms......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & migrane/cluster headaches.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 5/19/2009 4:05 PM (GMT -7)   
It is nice to see you Jev.

Donnaeil

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/19/2009 4:50 PM (GMT -7)   
Found this on about.com. May explain why we haven't heard of anyone who's been on it.
And I too am glad to see you Jev!!

Chutz

Savella (milnacipran) Release Delayed
Friday March 6, 2009

NEWSBRIEF: If you were hoping to try the new fibromyalgia drug Savella (milnacipran) soon, you'll now have to wait a few more months because the manufacturers apparently weren't happy with the pill's appearance.

When the FDA in January granted approval for Savella as a fibromyalgia treatment, forest Laboratories Inc. and Cypress Bioscience Inc. announced the drug would be on the market in March. Now, the companies say they're waiting on FDA approval for a "minor post-approval cosmetic formulation change." The FDA response is expected by the end of May, they said, and the projected release date for Savella is now mid-2009.
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
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Happiness is something to do, someone to love, and something to hope for."
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getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40573
   Posted 5/19/2009 5:35 PM (GMT -7)   
Thanks for the information John and Chutz. At least they are acknowledging that fibromyalgia exists, even if we get high blood pressure from the medication. It sounds a lot like the effexor that I take for fibro. Well, for depression, but it is used to treat fibro too. I didn't realize that until I looked in my pill book the other day. and I think it does help some. But the adderall works best for me for fatigue.

Too bad they didn't like the pills appearance, that seems too bad that they would wait to put it on the market because of that.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


K9
Regular Member


Date Joined Nov 2008
Total Posts : 263
   Posted 5/19/2009 5:40 PM (GMT -7)   
Exactly! It's good to see that drugs are being brought out specifically for fibro. So "they", particularly stupid doctors and even more stupid insurance companies cannot say there is no such thing as fibro.
FIBROMYALGIA - that's it!
Dx @ age 50
Lyrica 75 mg 3X/day
Amitriptylene 10 mg
Tramadol 150mg time-released 1X/day


Dagger
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Date Joined Apr 2008
Total Posts : 1522
   Posted 5/19/2009 8:44 PM (GMT -7)   
I was in a clinical trial for milnacipran. My resting heart rate is normally around 65; on milnacipran, it went up to around 120. My blood pressure went up significantly so I had to drop out. I know other people that had to drop out of the study for the same reason.

I have one friend who completed the study and loves milnacipran. It gave him his life back. He still has pain, fatigue, fog, etc. but he now feels well enough to work a few hours a week.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 5/20/2009 7:23 AM (GMT -7)   
John there are so many where you are, living on hope and prayer, that things turn around before they lose their jobs and of course so many that have lost their jobs. That kind of stress is hard on healthy people. All we can do is keep praying and have faith.
 
You know we are always here when you need to let it all out.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Sherrine
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Date Joined Apr 2005
Total Posts : 17094
   Posted 5/20/2009 7:39 AM (GMT -7)   

Hi, John!  It's great to see  you again but I'm sorry you are having all the stress in your life.  But, I think most of us are right now.  But I am confident that we will get back on track one of these days. 

I have heard of the Savella but haven't really checked it out.  I'm plugging away just fine on what I'm taking now.  Besides, I like to take generic meds, myself.  They have to have been on the market 20 years before they become generic.  I figure by that time they will know if there are problems with a medication or not. 

I hope everything goes well with your job and you make it through this stressful time.  I hope you can visit a little, too.  We do miss our men!  smilewinkgrin

Sherrine


Forum Moderator/ Fibromyalgia
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Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
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God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 5/20/2009 8:14 PM (GMT -7)   
I agree with Sherrine, I only like to take meds that have been around for a long while. I decided to participate in the milnacipran (Savella) clinical study because milnacipran had been used in Europe for about 15 years. It's used as an antidepressant overseas. I knew about the blood pressure issues so I checked my blood pressure everyday. Even without monitoring, I would have noticed the increased pulse rate.

about the time I was in the study, some reports came out that milnacipran was NOT showing the results they had hoped. It was not much better than placebo. The company's stock prices dropped. If you google it, you can still find the reports, it was around 2005. This concerns me. How come all of a sudden it works?

tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 5/21/2009 5:31 AM (GMT -7)   
Isn't this the plant that teens have been finding in Health food stores, smoking, and hallucinating on? I'll have to check with my post teen son, if he ever gets out of bed.Exactly what we need, psychosis.

lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 5/21/2009 12:03 PM (GMT -7)   
Well it just so happens that some Dr's are prescribing this med b/c my rheumy just gave it to me by chance yesterday! The warnings she gave me is that, yes they have to watch my blood pressure and also my liver enzymes...but they are already being monitored b/c of other drugs.
My rheumy was real excited about what she had heard about this drug. I'll let ya know what I discover. First I have to ween myself off of effexor, cant have any serotonin re-uptake whatchamacallit in my system then I can start it...something about the whole serotonin syndrome thing.
Even tho you guys tried to scare me, I am excited! Lyrica and Cymbalta didnt do anything for me...so THIS has to help...right??
lost in philly

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibromyalgia, Endometriosis, Migraines, Asthma, Chronic Fatigue

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Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 5/21/2009 3:06 PM (GMT -7)   
Tyno..the plant that you're wondering about the kids doing is Salvia. The new drug that they're talking about is Savella. It's only a L and a couple of vowels away. lol

tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 5/22/2009 12:05 AM (GMT -7)   
Thank-you for straightening that out, piercings. And here I thought I might take a trip w/o leaving home lol.

Halli
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/29/2009 6:11 AM (GMT -7)   
Hello I have started on this and So far it is MUCH better than Effexor and have had no side effects as of yet of course it is only day 11 on this med.

Has it helped yet not sure but I have noticed that I have been more active as far as leaving this cave, I still hurt but am able to deal a Little better or maybe Im just having a good week....Will advise on how well this works.

donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 6/2/2009 10:36 AM (GMT -7)   
Great Halli. thanks, I will appreciate your input.

Donnaeil

Bella Scarlett
Regular Member


Date Joined May 2009
Total Posts : 87
   Posted 6/3/2009 6:54 AM (GMT -7)   
I'm one of the ones who has recently quit a job over fibro. I only worked there for two months, going from PT to FT. It was just too much stress and I'm now dealing with the worst fibro flare I've ever had. Anyway, dr. gave me a sample pac of Savella, but I decided there just wasn't enough info yet to give this a try. After reading about possible high blood pressure, I will not take it. Plus it is in the antidepressant class, which I don't want to start unless absolutely necessary. For me, not working for a while ought to quiet down the flare.

Halli
New Member


Date Joined May 2009
Total Posts : 2
   Posted 6/8/2009 3:28 PM (GMT -7)   
Well I Have had no BP problems and have had better days with this drug....I still have those bad days but much less brain fog and have even been doing more.
If the FMS is that bad why not test things out as ANYTHING is better than the constant bad days or weeks.
 

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