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Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 9/25/2014 8:12 PM (GMT -6)   
Saw my rheumy today and she was playing a little diagnosis volley ball again. She's back to thinking it isn't lupus and brought up ankylosing spondylitis again but I tested negative for HLA B-whatever it's called.

I was determined to find my nerve today and be honest about how I'm really feeling and I did pretty good. I told her I don't really care whether it's Greek or Latin or Portuguese, I would just like to stop feeling like a train ran me over.

Luckily my rheumy shares my sense of humour.

So after she finished the tug of war with her thoughts she said she wants me to try Amitriptyline. It's supposed to hopefully help with the pain from my damaged nerves and help me sleep. I can't take nsaids so I'm crossing my fingers that this and the plaquenil I'm already on will at least help me get some sleep.

Has anyone had any experience with this? I'm starting on 10 mgs a couple of hours before bed daily.

As for the "it's lupus, no it isn't, yes it is" like I said, call it what you want. I just want to feel somewhat human. :P

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 9/25/2014 8:51 PM (GMT -6)   
Commonly known as Elavil, Amitriptyline is a very old med for depression. I was taking it back in the early 80's for depression, but I had an allergic reaction and ended up dealing with depression simply by distracting myself by overachieving in my professional life.

Anyway, I found this:

Elavil is used to treat a number of mental disorders including: major depressive disorder, anxiety, and less commonly psychosis, attention deficit hyperactivity disorder, and bipolar disorder. Other uses include: prevention of migraines and post herpetic neuralgia and less commonly insomnia.

I'm a little surprised a rheumy would be trying this... can you give us an up-to-date summary of your symptoms & lab reports? Maybe we can suggest something but I confess I don't recall your situation fully.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 9/25/2014 10:10 PM (GMT -6)   
Hi Lynnwood, it isn't really prescribed for depression that often anymore. It's used in much lower doses for neuropathy now and has been very effective for a lot of people with nerve damage. Apparently from what I'm reading it can be amazing and is one of those drugs like Rogaine that was found to have a better use than the one originally intended.

Here's an article on it,

"Tricyclic antidepressant medicines

An antidepressant medicine in the tricyclic group is a common treatment for neuropathic pain. It is not used here to treat depression. Tricyclic antidepressants ease neuropathic pain separate to their action on depression. It is thought that they work by interfering with the way nerve impulses are transmitted. There are several tricyclic antidepressants, but amitriptyline is the one most commonly used for neuralgic pain."

the rest can be read here,

So that's what it's for.

My summary is pretty long so be forewarned!

levido reticularis
arthritis - larger joints
nerve damage - several areas - EMG
elevated liver enzymes (slightly, not bad so I'm told)
sun sensitivity
cold urticaria
ANA 1:40
brain fog
hair loss
extreme fatigue
low vitamin D
recurrent infections (pneumonia, bronchitis, uti's, yeast infections)
mouth sores
constant high white blood cell count (that's what has the rheumy baffled, says it should be low)
ESR was positive or raised however it goes, can't remember

She goes back and forth all the time, next visit she may well be back to lupus again. My primary just shakes her head and says it's SLE. I try not to get too upset about it.

Anyway, I'm really hoping this stuff helps with the nerve pain and insomnia! People are using it for MS, fibro, diabetic neuropathy etc and seeing a real decrease in pain. I'm getting constant shocks in my face, arms, hands, legs.. it isn't fun :(
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 9/25/2014 10:22 PM (GMT -6)   
Here's the reviews I have been reading,

The known and most common side effects are drowsiness (that's why people take it before bed, a good thing when pain keeps us awake) and dry mouth.

I'm going to start it tomorrow night and will let everyone know if it helps. :) It takes 2-4 weeks to see improvement usually.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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