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Posted 11/12/2010 1:07 PM (GMT 0)

Hi everyone, I am looking to see if anyone can relate to my concern.

I have Fibro and Dx with RA too. This was dx 3 years ago and about a 1yr ago, Bloodwork started coming back showing the RA had left my body. confused

Has anyone out there had this happen to them... if so, can you please tell me your outcome. I am so curious to know how this crazy disease works on people.

So, If you could please help me out on my quest. I would be forever greatful!!! smilewinkgrin

Thank you all you wonderful people!!! Laura idea
Posted 11/12/2010 1:56 PM (GMT 0)

Well...all I could say is that one of my sons was project manager for one of the newer injectable RA drugs and in trials, many many people who had positive RA factor readings did not have the disease...others did NOT test positve and it was concluded they did have it.  I have a friend who has been treated for RA since she was 11 years old and never had a positive RA factor and the doctors have just been treating her for the obvious symptoms.  I guess the blood testing is just not an exact science.  I know that ANA's can change from day to day and many doctors do not use this as a guideline for autoimmune disease anymore.  Hopefully someone else with more knowledge will come along.

Donna

Posted 11/12/2010 2:12 PM (GMT 0)
Ty for your response!!
They make it so hard to figure this autoimmune disease stuff out! I often wonder if i have Fibro, or is it something else. I am on the highest dose of Lyrica you can have. My Cymbalta was recently upped 30mgs. Honestly, I think my Tramadol is the only thing working for the pain. Cause when i tried going off, what a mistake!!!! Pain!! Holy cow!!!

Well, again ty... take care, Laura :)
Posted 11/12/2010 3:39 PM (GMT 0)
Hi Laura,

I'm not sure about RA leaving your body. I know because my RA factor is just a bit on the high side, the dr is ordering another test called anti-CCP (citrullinated protein antibody). Maybe you should look at having that bloodwork done? What was your rheumatoid factor?

I also notice that you say you possibly may have lupus....I'm just wondering what your symptoms are because although my ANA is negative, I'm not so sure I don't have a form of lupus as well. My mother and grandmother both have lupus, I have sun sensitivity (itchy rashy bumps from sun), extreme hair loss, etc.

Anyways, I hope you figure out this RA business soon! I think alot of these diseases/conditions (whatever) overlap each other which makes a proper diagnosis and treatment difficult! I hate them all...lol!

Take care,
Krista
Posted 11/20/2010 5:10 PM (GMT 0)

Thank you so much for your reply. I truly appreciate your insight. I have had the ccp test. My rheumy has done all the normal test i've read about and xrays. But i'm not convinced on the RA yet myself.
If anyone else out there has a comment on the subject, please let me hear from you... i am going crazy with wonder about all my symptoms.


ty Laura shocked confused
Posted 11/20/2010 7:32 PM (GMT 0)

Hi just so everyone is on the same page as me... i was dx 2 yrs ago.. just as the doc was going to put me on all the RA fighting drugs. My RA factor and inflamation went to normal. No reason for it, but all normal.
Has this ever happened to anyone? Newly dx'd and whammo it leaves ya. confused

Out of all my friends on here, some one has to have a similar experience. Either that, or my doctor doesn't really know what i have. my sister in law told me her RA factor would go up and down all the time. But she never mentioned the Actual RA test that i have had.

So is it RA or something else.... i also have fibro. as you can see below. I am in so much pain today from a fall last week! I feel just like i did before my surgery on my cervical spine. sad

Anyway, I'm also waiting for my answer on the ssd. So much waiting with this game the government plays. like your a faker. uuhhhgg!!!

Ok, i'm starting to babble... thanks for any more input.. Laura :-)
Posted 11/21/2010 5:43 AM (GMT 0)
Laura, I'm sorry for your frustration. I know from my own experiance that
getting a diagnosis for an autoimmune connective tissue disease is a long
complicated process. Like Donna mentioned... bloodwork changes.

I have sero negative RA, but present with the usual symptoms.. bilateral joint
swelling, my hands certainly look arthritic, so do my wrists, feet, ankles, elbows
and knees.

I also have scleroderma, but my bloodwork did not show the antibodies for it,
but had clinical symptoms and a skin biopsy that was examined by 2 differant
labs confirmed it.

I also have lupus and again it was the clinical symptoms and the fact that I had
high titers of the antibody RNP that tied these CTD's together as one rare
connective tissue disease called Mixed Connective Tissue Disease.

Before this diagnosis I was labled with Undifferentiated Connective Tissue
Disease...meaning we know you have an autoimmune disease, we don't know
which one. Time, symptoms and a repeated RNP finding spelled it out!

Having fibro along with an autoimmune disease is not uncommon.
By the way it took my 3rd rheumy and his referrals to differant specialists to
figure it out.

Wishing you the best of luck :) Remember bloodwork isn't always telling!

Hugs, Robin
Posted 11/22/2010 6:26 PM (GMT 0)

Wow, thank you so much for giving a better understanding. I do want to go and get 2nd and/or 3rd opinions. I just feel that my Rheumy isn't understanding me. I've been telling him 2x's in 6mths about my wrist hurting like the devil, and swelling. But since he couldn't see the difference he seemed to just ignore it. when i went to my regular doc, Sue the PA saw the swelling right away..... so why do i feel stupid for telling the Rheumy. Then he tells me I really should think about seeing a therapist for depression I was guessing. Now i see a psychologist. So anyway, i told him the xray of my wrist and hands shows the epidermus raised from swelling. So he told me to drop it off and he would look at it. But i want to be with him when he looks at it... you can't miss it!!! I'm tired of people acting as if i'm makeing this crap up!! I am so sick of comparing myself to someone without auto immune disease. That's not why i mentioned anything to this person. ( mom). I love her but, uugghh! She really makes me feel like i shouldn't act as though I hurt more than her...but that is not what i am trying to do. I just need to talk to her, like a fellow pain suffer. just say i'm sorry.. not, "yeah well my this or that hurts ..........." I'm sorry i got off track.
I watched a video about RA. and this guy (a doc) really got to the core of RA. I really understand it much better now. It tells of which joints are for RA. and which one are OA. Now my joints make more sense to me when i have swelling and pain. If I new how to send it here i would. I will give it a try cause it was sooooo informative.

Anyway, thank you so much for letting me vent and babble :) Your all wonderful hear. Laura
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