Amber, I was originally diagnosed with something like "seronegative inflammatory polyarthropathy", since narrowed down to either psoriatic arthritis with axial involvement or ankylosing spondylitis with peripheral involvement.

There are all sorts of games to play with diagnosing a patient. They hate to hang a label on us that may not be accurate. More important, the insurance companies, yes, they who love to run our lives, only approve certain drugs for certain conditions, OR a drug may be approved by the FDA for RA but not PsA or lupus, or vice versa. Your doc may have reason to believe Orencia would work well for you and needs to hang the scarlet letters RA around your neck to get it approved and paid for.

My theory is that the different types of inflammatory arthritis are all stops along the same sorry railway. If you are being taken seriously and treated appropriately, which you seem to be, that is more important than exactly which beast you have.

I also have seronegative RA, and take Orencia. Also take Arava (generic). These drugs have been a miracle for me. Works really well. Give it a try, but do be patient. It takes a few months to start working, and after almost two years I am still seeing improvement. Great stuff!
Lynne

Thank you everyone this is really helpful! Also your story is very interesting 51percent as I have been having trouble with recurring tendinitis as well!

Hi Amber

We have a pretty sizable number of age 20 somethings on this group with RA. You will feel right at home. sorry about your diagnosis.

I am just curious,t he usual biologic first choice, by the ones that run everything, the insurance companies: is either enbrel or humira, they are anti TNF's.

the go to dmard before introducting a biologic in addition to or sometimes instead of plaquenil is usually methotrexate. the insurance companies usually like to see two dmard failures before a biologic. and methotrexate seems to be the standard bearer to at least have a trial run. has it been mentioned?

how much pred are you taking?

welcome

glad you are are here

Depot

Thanks for the reply Depot!

This is exactly why I was worried about starting Orencia, it seems like a random choice. I'm currently on 20 mg of prednisone and tapering off (which is going horribly).

I tried arava for about a month but had horrible stomach issues with it, so my rheumy took me off of it. I expected to try methotrexate next but he wanted to skip straight forward to Orencia. Interestingly enough the insurance company did approve it, but I figured I'd start with Humira or Enbrel first!

Hi Amber,

My wife has Seronegative RA. The only thing that was "Positive" in her blood work was SED Rate, and CRP. Everything else was Negative.

She was given Plaquenil in early May and has been on it since. She was on prednisone for 2 weeks and her RA doctor mentioned she could use it for flare ups since. However, Plaquenil was given because my wife has had abnormal liver blood work and then other RA medications will affect my wifes latent TB.

As of now, she will be taking Plaquenil and may start Azulfadine which are safe for the liver. My wife is 25 years old. Her morning stiffness is completely gone(not sure if the prednisone helped or if the Plaquenil kicked in early). However she does have flare ups 3-4x a week. The Plaquenil is supposed to take 3-5 months to work.

To add to the latent TB, and abnormal liver blood work, she was also recently diagnosed with an H.Pylori infection. It hasn't been the best times. But we accept it, and try to live our lives normally. We have a 11 month old baby too. I hope you feel better. :)

It's very common to test negative to RF Factor early in the disease process. Even the newer anti-ccp test is not foolproff. I was serronegative in 2007, in 2014 I am seropositive (20) but only weak positive anti-ccp (10).

But on physical exam there was no doubt about the diagnosis. I had no bone errosions in the beginning but symmetrical polyarthritis in upper and lower body. Since diagnosis there is some bone errosions in the feet and significant "secondary osteoarthritis" (joint space narrowing) in the elbows and knees. I also have some tendon damage in fingers, wrists, and toes.

There is a very small window, maybe a year, in early RA where aggressive treatment will make the most impact on your long term prognosis. If you wait for glaring evidence of damage (more severe disease) then its already too late, most damage is irreversible. Significant bone errossion can also take joint replacement off the table.

If your Rheumy is confident in the diagnosis then you should likely trust his judgement. There are no tests to tell him how quickly your disease will progress so he's gonna treat it aggressively ... BIOLOGICS.

Yes they are as bit scary but really for most of us the only way to avoid disabling joint damage. Do your homework, ask questions, but do seriously consider biologic therapy.

The doctor did mention using biologics for my wife since some are healthier for the liver. My wife didn't want an agressive approach just yet.

How long would someone with seronegative RA have to use a biologic for? I still haven't understood RA medication fully. Is it lifetime? One of the Rheumys we visited mentioned he used MTX in patients for 2-3 years depending on symptoms. But I hear it could be a life time treatment?

PS not sure why your Rheumy is skipping the TNF-alphas And moving direct to Orencia. He likely has a reason so make sure you ask him.
It may be that it costs less and perhaps he is familiar with your insurance companies preferences.

What works for you IV versus SubCu injection should be the most important factor in choosing. Are you okay with learning to give yourself injections?

Thank you all for the responses, this is really helpful!

While I appreciate that my rheumy has believed my symptoms instead of telling me it is "all in my head" like many other doctors, he isn't very communicative. At my last appointment he told me that I have an autoimmune connective tissue disease that doesn't fit in a neat little box, but we would continue treating it so that I'd feel better.

Then, when I called to let him know about the negative effects of the Arava, he emailed me and told me that I would need to start Orencia for my Rheumatoid Arthritis. No explanation or anything.

I had been hoping for an infusion also but it turns out I am getting the injections, and I think it is too late to ask for infusions instead.

Honestly, I had a lot of misconceptions about RA and didn't think I could have it because I thought the only symptom was joint pain and erosion, and that I was too young to have it. This forum has really helped open my eyes to what RA is really like!

I am looking for a new rheumatologist for a second opinion but they all seem to have 3 month waits. I have been flaring for a few months now so I don't know if I have that long!