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Old 08-19-2012, 06:16 AM   #1
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New to Fibro-have medication question

Hello Everyone,
I am a 42 year old woman and I'm new to the Fibromyalgia board. I have going back and forth to Doctors for several years now trying to figure out what is wrong with me. Have had joint pain, muscle pain, extreme fatigue and flu like feelings for years. I actually think I have been having these problems to some degree since my twenties. I have been diagnosed with dry eye and have had punctal plugs put in, still working on the eye inflammation after steroid drops did not show improvement. I also have very dry mouth and severe dry nose. The thought has been that I probably have Sjogren's but the Sjogren's antibodies come back negative and bloodwork is all normal. I don't feel normal!

Until I have a lip biopsy done and have that show positive then the Sjogren's will not be diagnosed. The Rheumatologist that I have been seeing diagnosed me with Fibro, I have some of the pressure points but not all (the ones I do have are super sore!) and she believes the flu like feelings and muscle pain is from the fibromyalgia. She wants to start me on one of the Fibro meds but wants me to think about it and maybe talk to my primary because the meds can cause dry eyes and mouth. She said I need to weigh the options because I already have very bad dryness.

Can anyone tell me if they have noticed dryness while taking medication for Fibro? I beleive she said it would either be Lyrica or Cymblata. If anyone already had dry eyes and mouth before, did it get worse while taking either of these meds? I have a coworker who is on Lyrica and she said it helped her tremendously. I just want to try something that may help.

One more question...she also said I have bursitis in both knees. Is this another common thing with Fibro?
Thanks for listening!

 
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Old 08-19-2012, 10:24 AM   #2
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Re: New to Fibro-have medication question

There are a lot of meds that cause dry mouth, but that side effect doesn't happen to everyone who takes it. In a trial of Savella, 5% of patients on the drug experienced dry mouth vs 2% of patients on a placebo. With Lyrica it was 5% on the real drug and 1% on the placebo.

If I were you, I'd ask to try it, starting at a low dose. If it causes side effects you can't tolerate, stop. If it helps, great. If nothing happens, ask permission to try a higher dose.

Keep in mind, Lyrica and Savella are NOT the only options for fibro, or even necessarily the best. They are just the newest (and most expensive.) Currently they are the only drugs specifically approved to treat fibro, but doctors have used other medicines "off label" for decades. So if you don't like either one, there are lots of other options out there.

 
Old 08-19-2012, 11:48 AM   #3
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Re: New to Fibro-have medication question

Hi, i cannot add more about medication than the previous poster. However I do suffer from bursitis in the hip and shoulder and I have steroid injections every 6 months which give terrific relief.

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Old 08-19-2012, 02:37 PM   #4
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Re: New to Fibro-have medication question

Quote:
Originally Posted by janewhite1 View Post
There are a lot of meds that cause dry mouth, but that side effect doesn't happen to everyone who takes it. In a trial of Savella, 5% of patients on the drug experienced dry mouth vs 2% of patients on a placebo. With Lyrica it was 5% on the real drug and 1% on the placebo.

If I were you, I'd ask to try it, starting at a low dose. If it causes side effects you can't tolerate, stop. If it helps, great. If nothing happens, ask permission to try a higher dose.

Keep in mind, Lyrica and Savella are NOT the only options for fibro, or even necessarily the best. They are just the newest (and most expensive.) Currently they are the only drugs specifically approved to treat fibro, but doctors have used other medicines "off label" for decades. So if you don't like either one, there are lots of other options out there.
Thank you. I think I will try it out, as you say I could always stop if side effects are too much.

 
Old 08-19-2012, 02:44 PM   #5
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Re: New to Fibro-have medication question

Quote:
Originally Posted by Agenda View Post
Hi, i cannot add more about medication than the previous poster. However I do suffer from bursitis in the hip and shoulder and I have steroid injections every 6 months which give terrific relief.

Regards
Hi, the doctor did mention something about injections but we never got back on the topic. The pain is worse when trying to sleep on my side so for now I am just sleeping with pillow between knees. Thought it was strange because everything I have read about burstitis in knee is all sports related, although I am a walker I am certainly no athlete!

 
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Old 08-19-2012, 03:22 PM   #6
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Re: New to Fibro-have medication question

Knee bursitis is surprisingly common, but it's not a part of fibro. It's just one of those things that happens to your body if you use it a lot.

I have it in left knee only because I've fallen on the left side a few times. I had one steroid injection back in March, and it helped a lot. Starting to wear off now, but I'm only 31 and I don't want to get into having the injections frequently, as they can weaken a joint in the long run.

One day at a time, right?

 
Old 08-20-2012, 07:12 AM   #7
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Re: New to Fibro-have medication question

hi,
do the biopsy. sorry you have to go that route. i have sjogrens. if that's what you find out you have there are meds to slow it down. so far i have tried 3 meds without being able to handle the side affects. right now in a space of leaving my body alone and letting her get over the fallout from the meds. when the pain is really bad again i will go back and we will discuss the next steps available to me. i have done the injections in several places on my body. they do help, however at my age i am not as concerned with potential side issues from them.
i have roosters comb injections in my knees. they hurt to do but sure do give me some cushion for my bones. those last me about a year or so.
peace,
blue

Last edited by bluelakelady; 08-20-2012 at 07:13 AM.

 
Old 08-20-2012, 12:00 PM   #8
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Re: New to Fibro-have medication question

I have the dryness also but the test came back negative for the sjorgrens. I just chalk it up to another fibro symptom. Hopefully the biopsy will help you
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Old 08-25-2012, 04:53 PM   #9
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Re: New to Fibro-have medication question

I have had cymbalta and it never caused dry eyes for me. It helped take the edge off. At this present time I am taking Savella. I have also used lyrica but after a year it became difficult to breathe as I walked. Became allergic to it. Different medicines work differently on other people. So you may have to play it by ear and what works for you. Have they ever checked you first for Lyme disease or Lupus? They do mimic Fibromyalgia. The doc had the test done as to eliminate other diseases. That was the first thing she did. Good luck!

 
Old 08-26-2012, 07:00 AM   #10
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Re: New to Fibro-have medication question

Those meds can dry you out. but it might not dry out the next person.

I take cymbalta and it does dry me out some. Add flexeril and tramadol at night and i feel like a prune. but a prune with a good nights sleep.

 
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Old 08-26-2012, 03:56 PM   #11
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Re: New to Fibro-have medication question

I did take the cymbalta with tramadol and it didnt dry me out. Thats why I say that medicines dont work the same way for everyone. My best friend has Fibro also and she cant take any medicine without a side effect. The Savella that I take does nauseate me but as time goes by it gets a little better not too much. LOL As for the prune! (LOL)At least you get a good nights sleep. I can use a good nights sleep!

 
Old 08-27-2012, 11:59 AM   #12
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Re: New to Fibro-have medication question

I take a combination of Lyrica and Cymbalta. I started the Lyrica first and the Cymbalta second. I wasn't dry from the Lyrica but Cymbalta makes me thirsty.

 
Old 08-27-2012, 12:41 PM   #13
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Re: New to Fibro-have medication question

Thank you to everyone who responded. I called the Rheumatologist to ask her to go ahead and prescribe something but she is on vacation now..ha ha! Of course this is when I am having a very lengthy and painful flare. I'll have to wait until the end of the week, I suppose it takes time to start helping anyway. I figure I might as well try it, I can always stop if I need to. I can't imagine being any more dry than I already am

 
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Old 08-27-2012, 03:45 PM   #14
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Re: New to Fibro-have medication question

You are very welcome. Keep trying until you get something that works for you. Good luck and let us know how it goes.

Last edited by hydromyst; 08-27-2012 at 03:46 PM. Reason: misspelled word

 
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