Five years ago after a viral illness I came down with fatigue, joint pain etc.
and saw my first RD. After six months she said you can't have RA there is
nothing in your blood and you have now swelling so off for the second
opinion. The second RD who is the "best" in town said RA and
immediately put me on MTX I tought I felt better but after about a month
same symptoms, flu-like, fatigue, pain etc but again no swelling
anywhere and no blood work to back it up. RA factor has always been o
and sed rate never above 9. Tried five years of TNFs on and off.
Fast forward : today I saw a new RD after being off all meds for 9 months
here is how my labs read
Sed rate 9
anti CCP -neg
RA factor neg
ANA neg
the only thing that shows is a full body bone scan : uptake in both
shoulders and both hips.
x-rays no damage anywhere and no swelling after being off all meds for 9
months does this ssound like I need RA meds.
I do still have flu like symptoms and joint pain, bad walking but is it
RA??????????? What is you opinion. Doc wants me on Orencia. ThanksWow, Terry. I don't know. I mean, I think I'd want another opinion before starting Orencia. That's just because you blood work is so good and you haven't taken anything for 9 months. That's a long time. Still, it's not like I'm an RD.Oh, and BTW, welcome to the board
I dont know about the RA.... Your sed rate is pretty low, are you having joint pain? Like Linncn said though I am not a RD. I hope you get some answers soon. I know its frustrating. Hang on, and some more people will chime in. Keep posting.
Hugs
Sorry, just read your post again and you do have joint pain.....
Welcome to the boards.
Welcome to the board!
I have no input, just wanted to welcome you. Ok I lied... I do have an answer to your question... no, maybe. Do what you feel is right for your health. Terry, I misunderstood your original post. I thought that your xrays were all fine too. If you can hadly walk without pain and two out of three docs agree that you have seroneg RA, maybe you should just give O a try. When I started Enbrel, it worked over night. One day just about every single movemnet I made caused pain, the next I was pretty normal again. Maybe O will work that way for you.I guess if this is the second RD to say sero neg maybe its just me in
denial. But it just seems like all I read about is everyone after five years
has damage ( which don't get me wrong) I am glad I don't but they also
swell when they go off they meds for like two days. So I have a hard time
believing this......just the way I question things but they spend alot more
time in Med shcool. And a sed rate of only 9 after no meds for ( months)
whats that about? see my problem but then I get the pain and my reasing
goes to hell. I do also get pleurisy at least twice a year and then they start
checking for lupus but no ANA ever. This disease just basfles me! I guess
I'm not text book by any means. Thanks again
Hummmmmmm..... well it is up to you if you want to take it or not. Maybe see if he will try something else that you feel comfortable with. You already tried Humira & Enbrel, right?
Maybe, you have fibro. See if this sounds like you http://www.fibromyalgia-symptoms.org/fibromyalgia_treatment. html
Terry, I have a whole theory worked out in my head about how it is that I don't really have RA. Whenever things are going well for a couple of months straight, I start talking myself into it again. I'm actually sort of obsessed with it again right now. And I have way less reason to believe it than you do. The bottom line of my theory is just this...I just can't picture myself having an incurable disease.
The point is, I'm really glad I've trusted my RD on this more than my own self, because if I didn't I'd really be a physical mess. And deep down, I know that. I guess it's to you to decide whether your pain is worth giving O a try. But it sure feels good to feel good.Yes ma'am. You can be the President.Joonie I tried remicade and Humira and then was taken off because I was
dxed with nystagmus a CNS disorder and considered possible MS since
but nothing new since. MRI shows 3 lesions but they say are from
migrains which I only had since 37 now 46 so no more TNF and sis has
MS.
So Orencia is the only one they will use on me.what about arava?
Wow Terry, Your symptoms sound exactly like mine! I am in the same boat as your are.
I was diagnosed with RA when I was 10 after some joints swelled up and I had limited movement. I was put on naproxen and a maleria drug and things seemed to go awaya until college. Then I started getting the symptoms you are describing. Flu like, fevers, some joint pain.
I recently went to the doc after my wrist started hurting. I am new to town so this was a new doc. Told him my past, he took blood. But before I even left the office THAT FIRST MEETING he wanted to put me on Enbrel!
Blood work came back perfect. No R Factor sed rate of 8. STILL wanted me on Enbrel because he said he felt inflamation.
SOOO I am just as confused as you are. I don't want to take the enbrel, but I have been on it for 2 weeks now. I am giving it a try thinking maybe I am in more pain than I know. Maybe you should TRY something too. You can always stop.
So far I haven't felt any different, maybe it will be different for you. Keep me posted on what you decide!
what do your thyroid numbers look like?Yeah, I went to an RD that told me I had no inflammation in my right knee because she could push down my knee cap. Now I have more swelling and can still push down my knee cap. I think that RD was full of crap.
You never really know how much pain you are in until you get the problem corrected. Sometimes you unknowingly adapt, or over the years you have just gotten use to your left foot hurting when you are on it and compensate for it by using your right leg more. Well, that is how it is for me.
Welcome.
My guess is that you do have RA. I went for many years (7-8?) before I showed any x-ray damage. You really want to stop that.
Have you tried arava, mtx or plaquinal?
Terry,
Does your joint pain migrate?