Savella

What's the low down on Savella?  My rheumatologist has just given me a 2 week dose to try.  I read up on side effects and don't know how I would tell if I was having problems since I already have all of the "side effects" listed.  This lady didn't even consider me having dysautonomia.  She thinks it is strictly fibro, but then she even admits not knowing why I pass out and things.  Some of these doctors drive me crazy.

[AireScottie]

May I ask why you are seeing a Rheumy?  Do you have an autoimmune disease by chance?  If so, boy have I got some info for you!  It can destroy your peripheral autonomic nerves.  Let me know if you've got something.  Send a private message if you don't want to discuss on the board.

[acesew]

all the rheumy says is I have fibro.  She don't even want to consider the fact of something else being wrong like the dysautonomia.  So far no one has told me about an autoimmune disease.  I don't know yet.  I just worry about taking all this medicine.
This lady even told me to stop all my other meds.  When I told her that I am still have a lot of pain, she told me to just deal with it.  So right now I am doing my own research on this stuff before taking it and see if it may work for me.  I have to figure out some way to help my pain.
If you don't mind, will you let me know what you know.  Thanks

[Heiferly]

Who is treating you for your dysauto?  Have you run this past him/her?  Whenever you get treatment from another doctor who has no knowledge of dysauto, you need to double-check that it's safe for you with your dysauto doc before going forward with it.  If you don't have a solid dysauto doc, you probably need to start there before pursuing the rheumatology angle.  

[AireScottie]

Heiferly's right.  You should have someone who understands the dysautonomia first, and even have that person call your other doctors if necessary to explain it.  If the rheumy isn't willing to deal with or admit the existence of dysautonomia, that can be a big problem.  A huge number of drugs can affect your symptoms.
That being said, did your rheumy do any bloodwork?  ANA, sed rate, CRP?  Anything out of range?  I'll get you some more info on the autoimmune-dysautonomia link soon; kind of spaced out right now.

[acesew]

I currently don't have a dyso dr.  No one here knows anything about it.  I have an appt with Vandy in Jan to find out about it.  On the ANAs and etc., the rhuemy has never pulled blood on me.  The times I have made me pcp do it, it hasn't been abnormal.  I do know that that does not necessarily mean anything.  My mother has lupus (has had it for several years) and still has a negative ANA.  My white cells will some times be slightly out of kilter and sometimes my minerals (?)---like calcium, phosphorus, etc.
The rheumy made me really anger yesterday when all she wanted to tell my was I have the fibro.  She already has told me this back in May, but she can't even explain why I pass out, but then doesn't want to admit something else could even be causing my pain and the passing out.
I would switch drs., but really don't know where to go until I go to Vandy.  
Thanks for y'alls input.  That helps me a lot.

[acesew]

To add to this Savella topic for anyone else.  I hate Savella.  I took 2 of the very small doses (12.5 mg).  One Friday night and one Saturday morning.  At the time I did not realize it, but I did not sleep much Friday night bc my HR was high.  Saturday within an hour of taking it, my HR was at 116 and did not come down until around 4 o'clock that evening.  I am still having side effects today from it.  I feel awful.  I am very nervous and jerky and am having to stay very still as much as I can stand.  And the headache is horrible.  I can't take anything for it right now either bc of all of the drug interactions.  I am wanting to make sure the Savella is out of my system before putting anything else in it.
My advice, if you have trouble with HR already, don't even think about the Savella.  I know that Aire told me it most likely wouldn't be a good idea and it wasn't.
Hope this helps someone else down the road.

[AireScottie]

Autoimmune diseases tend to run in families.  I'm not very good with lupus, so you might want to mosey over to the autoimmune or lupus forum and pick some brains over there.  My ANA was normal too, but I have Sjogren's.  There are people over there who will know what tests can be done if your ANA is normal.  Autoimmune diseases often cause peripheral neuropathy, which can include all the crazy dysautonomia symptoms we get.  And, if you look at the symptoms, you'll see pain and burning, just like fibro, only this has an actual explanation.  Many of the treatments are the same, but if you have an autoimmune disease and get it under control, the nerves can start regrowing and symptoms improve.
Here are a few different articles to read on peripheral neuropathy and small fiber neuropathy; see if you can relate:
http://www.medhelp.org/medical-information/show/74
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131
http://www.ccjm.org/content/76/5/297.full.pdf+html

I wish you the very best at Vandy in January!  Since your rheumy is such a Pthbbbt, you might think about trying to see a rheumy at Vandy on the same trip.  The only thing with that is they seem to specialize in one or two diseases and not know about any of the others.  But I say rule out (or in) anything that can be treated.

[eliska]

i just got back from dr. visit w/neurologist who prescribed savella for my fainting spells. he mentioned pots as a possible diagnosis. i drove 200 miles to see this guy because no one has been able to put together a diagnosis for my wide range of symptoms.
reading about pots gave me hope at last because FINALLY, there was a diagnosis that put the whole picture together. well savella didn't sit well with me at all. didn't help ANYTHING except my appetite. and it made me very irritable, sometimes downright outraged, over the smallest things.
so the dr is stopping it but he made the damndest statement i'd ever heard. he said he didn't think i had pots and when i asked why he said because the savella didn't help my symptoms. i observed that based on his logic, i also didn't have high blood pressure because the blood pressure medicine wasn't working either but my blood pressure was 180/85
he didn't appreciate that - lol
but now i'm back at square one. so my answer to your savella question is - i took it and it didn't help and the side effects (anger and rage) forced me to stop

[Heiferly]

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-heiferly.

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