For those with RA diagnosis

[SjoGirl]

Ask them to have sonograms done of the joints that are deformed. As I was having mine done the sonographer, then the person to whom she reported, both asked if I was being treated for RA. I had not had significant swelling, some, but not a tremendous amount, but was in pain. That report convinced my rheumy that I might indeed have RA despite lack of blood work that would support such a diagnosis. I am taking Imuran for it and it is helping immensely.

[Tharrell]

I am still on orencia and a few days ago my rheumy upped my dose of arava to 20 mg. I'm still on 2.5 mg prednisone. I seem to be going into a flare every other week with more hoint pain. It is so frustrating. It doesn't help that my other conditions are getting worse. I had asked my rheumy about switching to rituximab, but she said flat out that she was not ready to kill me yet. So I guess that was a defenite no.

[MAT51]

Hi there. I was diagnosed with seronegative RA in 2011. Then rediagnosed with seronegative SS in 2016 by +ANA and lip biopsy. My new rheum thinks I have relapsing- remitting RA.

My symptoms these days are consistently far more SS and MS-like than RA. But being seronegative in the UK/ Scotland means that, unless my joints are very visibly swollen again and I have erosive damage visible on x-ray, I won't be eligible for Rituximab or other Biologics. They say this is because Rituximab isn't licenced for SS here and has no track record of effectiveness for seronegative rheumatic diseases anyhow. I am certain that this is nonsense being pedalled by our belleagued national healthcare system due entirely to cost. As I pointed out to a leading professor of immunology and rheumatology recently there is no way of knowing whether drugs such as Rituximab would help us because we seronegative people aren't included in their clinical trials! Grrr this subject makes me mad! He agreed and said he's working hard on this but not to expect things to change for a while.

[Sharon]

SjoGirl- Yes, I was eventually diagnosed with sero- RA based on X-RAYS alone.
Glad Imuran is helping you, it was never suggested to me. How long have you been on it?
How does it affect the SS?

Tharrell- How long have you been on Orencia now? I'm closing on a year on it and have also been having frequent flares lately. Why would your rheumy think Rituximab would be dangerous for you I don't understand. 

MAT51- Researchers need to begin testing these meds commonly used in SS for the 40%+ of SS patients who are sero-negative!

[SjoGirl]

I have been on Imuran for about 8-12 months. I recently had to increase the dose to 75 mg per day following a long and very bad flare. I took Medrol to see if it had an impact on the flare, it did so my rheumy decided that my issue was inflammatory in nature and increased the dose. FYI I suffer very few side effects from this drug, which I can't say for many others.

Well, do I have SS or RA or both? My rheumy says it doesn't really matter, which really means he's not sure because I have negative bloodwork and no erosion of joints yet. However, I have had classic swelling and redness in joints and pain throughout joints all over my body -- spine, hips, knees, feet. Ever since I started Imuran it has all subsided. I can actually feel my feet again, for the first time in years.

[Sharon]

That's amazing SjoGirl!
I've heard it's difficult to differentiate between RA and inflammatory arthritis from SS sometimes.
As long as we find something that works!

[Tharrell]

Hi Sharon. Been on the Orencia about 1 1/2 years now. I don't understand her comment about the rituximab either.

[Sharon]

Thanks Tharrell, I've been thinking of adding something to the Orencia like you're doing.
Right now it's all I'm taking.
Are your joints still sensitive? Meaning if you press on them do they hurt? Mine do...

[Tharrell]

Yes they do. My rheumatologist looks at my hands and says, most often than not, no swelling. Boom, end of story. Sometimes I could shake her!

[Deb 27]

Sharon, sorry you are in so much pain right now. The prednisone will fix it up, temporarily........ if you get desperate!!!

Seronegative RA was my first diagnosis. I had  sausage like swelling in my fingers. Also my toes and the ball of my feet hurt. My Sed Rate was 3 5, ANA 1:160 with speckled pattern, and my RF was  right on the border for cut off to be positive.  He diagnosed me with seronegative RA. He was a very good rheumy, very experienced at Mayo Clinic. He is now retired. He put me on prednisone and plaquenil.  It was a rough go with joint pain. Funny though, my ANA went negative after the prednisone. He started me at 10 mg and tapered me down over several months.   The prednisone gave me so much energy. It was a few years later when I moved and had to change rehumies, she ordered a lip biopsy and it was positive. 

There has to be a standard of care for RA and medications from the American College of Rheumatologists.   They usually have these flow charts for diseases, symptoms and medication options.

Have they ruled out any other reasons for joint pain like low Vit. D? I hope you can get some relief soon.

[Sharon]

Tharrell- Thought the Orencia was supposed to take care of these issues?

Deb- Thank you for your kind wishes. They seemingly ruled out other obvious causes for joint pain. I take Vit D supplements so mine is good. X-rays show "arthritic changes". I've tried a few things so far. Allergic to Plaquenil and some other meds. Orencia (a biologic) helped alot in comparison to many other meds but has been wavering lately. I was put on Prednisone back when they were trying to diagnose me and it was great, but mostly at 20mg and it was heck coming off it. Yes, my ANA went from positive to borderline on the Prednisone. I'm quite certain it went back up to positive after I got off it though.

[Tharrell]

The orencia was not enough so I do take 20mg arava as well. I'm still in 2.5 mg prednisone. I think something systemic is going on, I have been in pain for weeks. Only thing that helps is a medrol dose pack.

[Sharon]

Tharrell- Have you tried medical cannabis for the pain and inflammation?

[Tharrell]

I'm in a state that is not allowed. I tried cbd oil, but that stuff kept me up at night.