For those with RA diagnosis

[Sharon]

I suffer from terrible joint and tendon pain on a near daily basis now.
(I have positive ANA but non-specific for RA)
Reumatologists won't give me an RA diagnosis because I don't have "visible swelling".
This means I can't get biologics to treat it.

What symptoms did you present with to be diagnosed with RA
in absence of positive blood tests for it?
Did anyone get the diagnosis without having visible swelling of joints, just pain?

[Tharrell]

I just kept badgering my doctor! I was in daily bilateral pain in my joints in hands, elbows, knees, feet. It takes me more than an hour every morning before my hands become usable. The only thing that was helping to control it somewhat was my longterm steroid use. It actually took about three years before I had visible joint swelling. I had tried sulfazalizine without any luck. Methotrexate alone wasn,t enough. My first rheumy actually seriously disliked using steroids except for the occasional medrol dose pack, so after a year I got Humira and seronegative ra diagnosis. Then I lost my rheumy and I had to start over. Had to cry and complain about my joints for almost two years. This rheumy has me on longterm steroids, she also discovered my positive rnp and thus mctd. Ra can be part of the mctd picture. Remind me again why you didn't get that diagnosis with your positive rnp? Anyway, I finally got orencia and am now tapering of the steroids finally!

[Sharon]

I haven't gotten any additional diagnosis besides Sjogren's yet even with the positive RNP and pain all over my body because according to rheumys I don't meet all the criteria for any other diagnosis (I have many other symptoms as well which don't really fall neatly into any of the AI categories such as dermalogical, immuno-allergic and gastro symptoms). They keep on insisting I need the visible swelling for the RA diagnosis.
They just raise the steroid dosage in response to my complaints and have suggested Methotrexate.
I just developed joint deformity in some fingers and still I can't get the diagnosis!
I don't understand why they insist on visible swelling when the symptoms so obviously point to RA.

Do the biologics help you with Sjogren's symptoms as well?

[Tharrell]

The orencia is actually being studied for sjogren's. so far it has helped my eye dryness and my joint pain. I have only had four consecutive shots so far due to recent surgery and like all meds it can take up to 6 weeks to go to work.

[eye2dry]

hello Sharon.

I had positive labs before I got the visible swelling. My fingers and wrists are swollen
and red/warm to touch. My elbows and ankles hurt but not as bad as 6 years ago.

Do your xrays show anything to help with diagnosis?

My rheumy is opposite of yours....he jumps to Humira right off the bat,
no wading in with him. However.. I would not go any further than Plaquenil
and MTX., My second visit with him he was talking about Rutuxan infusion.

shelly

[Sharon]

Thank you Tharrell- how often do you get the shots?

Hi Shelly- They only did x-rays of my wrists and elbows half a year ago and they were "inconclusive".
Why didn't you want to try the Humira? Are side effects worse than MTX?

[Tharrell]

Sharon, my shots come in an auto injector and I do them once a week myself. There is also an orencia infusion, but I have no info on that.

[Jasper]

I have a diagnosis of sero-negative RA.

I have pain in my joints but no major swelling, warmth, or redness. Some of my joints are ever so slightly swollen, but you cannot see it unless you are palpating them, and then just barely. You can see a little swelling at my ankles, laterally.

However, I know there is swelling IN the joints. And I know the Rituximab has decreased that swelling because I no longer get the positional numbness in my hands while driving and at night while sleeping. So, the swelling inside those joints has decreased enough that there is no longer positional nerve compression. The positional numbness also disappeared when I was on Prednisone tapers.

In addition, the joint pain and stiffness decreases with Prednisone and with Rituximab. In fact, when I get the IV steroids with my Rituximab infusions, I don't have any pain or stiffness for several days, over a week.

A person can have RA without having the visible swelling, especially early on. RA can be diagnosed earlier by using ultrasound or MRI and looking for signs of synovitis in the joints.

http://www.diagnosticimaging.com/articles/mri-and-ultrasound-reveal-early-signs-rheumatoid-arthritis

http://www.ajronline.org/doi/full/10.2214/AJR.11.6798

I think you have to have a Rheumatologist who is interested in helping you as much as possible and a Rheumatologist who is willing to treat you with the most beneficial drugs that are now available. You need a Rheumatologist who is willing to treat the disease, and not just treat the symptoms. It is my experience, that most Rheumatologists are stuck in park when it comes to Sjogren's Disease. They don't seem to realize that we are in just as much pain, become just as disabled, and have just as poor of a quality of life and people who have other systemic autoimmune diseases. They treat the other autoimmune diseases, but seem to think ours is just a nuisance.

I happen to have an excellent Rheumatologist who competently and expertly treats me and my disease, but most of my acquaintances with Sjogren's Disease have lousy Rheumatologists. Some do nothing, not even Plaquenil. Most give Plaquenil and a few other drugs for saliva and/or eyes, but do nothing else. People just keep deteriorating, become disabled, and have lousy quality of life.

There is a new treatment for Alopecia Areata (autoimmune baldness) called Tofacitinib, which is a kinase inhibitor. It is also used for RA and some other autoimmune conditions. My point here is that they think it is important to treat baldness with more potent drugs, so why don't they think it is important to treat Sjogren's Disease with more potent drugs that target the actual disease and not just the symptoms.

There are other forms of inflammatory arthritis and you could have sero-negative RA or you could have one of the other forms, such as Sjogren's Arthritis, Psoriatic Arthritis, or others. The important thing is that you have or get a Rheumatologist who is willing to treat your condition and who will think out of the box if necessary..

[Sharon]

Thanks for the info Tharrell, I'm glad the treatment is effective for you!

Jasper- Thanks for all the info you posted. I agree with all you've said about treatment and rheumatologists. I have been to 6 rheumatologists over the past year and a half and haven't found "the one" yet. I continue to search. Where I live the biologics are only prescribed for RA so I really need to get that specific diagnosis.
In the meantime I have deteriorated and the joint and tendon pains are disabling. They have put me back on Prednisone. It did nothing at 15mg so now they raised to 20mg.
How much Prednisone actually helped with your pain?
Are you not completely pain-free even with the Rituximab infusions?

[Jasper]

Yes, I understand that you need the RA diagnosis for treatment. Actually, you need the RA diagnosis here in the US also for treatment, much of the time anyway.

I am just saying that you need a Rheumatologist who will think outside the box. You need a Rheumatologist who is going to treat the whole you, not one who is stuck on one or two symptoms )or lack of symptoms) that don't meet her criteria. Maybe an ultrasound or MRI will show inflammation and swelling in the synovial fluid or bone. Even if it does not, she still needs to treat you.

The Rheumatologist must think you have some form of inflammatory arthritis going on or she would not be treating you with steroids for the pain. Or are the steroids for something else? You said she increases the steroids for your pain.

Actually, most Rheumatologists try to stay away from steroids if possible. Or, at least, they give them mainly as tapers for flares and try to keep the person off of long term steroid use. I know that is not always possible, but most try to keep people off of long term steroid use due to the long term and often severe and debilitating  side effects.
In fact, one of the reasons my Rheumatologist is putting Sjogren's patients on Rituxan infusions  is to get them off of steroids. The other main reason she uses Rituxan is  because she can see it helps immensely with the fatigue, joint pain, neuropathy, and other Sjogren's symptoms. People are able to have lives again and are able to function.

I was on Prednisone tapers, never long term Prednisone (except when I had systemic vasculitis in 1994). My Prednisone tapers were 20 mg x 5 days, 15 mg x 5 days, 10 mg x 5 days,  5 mg x 5 days, and then stop. The very first taper I had started at 10 mg and worked down from there (4 decreasing doses). That taper did nothing. My symptoms were basically unchanged. The 20 mg tapers did work and took away most of the pain and stiffness and gave me energy. Then, about a month or 6 weeks after the taper ended, I would go into another flare. So, to answer your question, I guess I would say 20 mg of Pred worked for me for the joint pain (and other symptoms).

On Rituxan infusions, I feel the best I have felt in years. I still have some joint pain and stiffness but it is not disabling and I barely notice it. Some days, probably most days,  I really have virtually no pain. I am able to be active and walk daily. I also do strengthening and stretching exercises, which I think help me stay more limber and help decrease stiffness. However, I credit Rituxin for the major improvements I have had. I have been exercising and walking for years and the improvements did not appear until after I started Rituxan.

I hope you can get some appropriate and helpful treatment in the future.

[Sharon]

Thanks so much for the suggestions and ray of hope Jasper.
Yes, it is strange no imaging tests were ordered.
My rheumy actually said he has "no idea" what's causing my joint symptoms
after seeing how it has deformed my finger. He had originally said "Sjogren's pain" but
changed his mind to "you're an enigma" after that visit.
He wants me to take 20mg of Prednisone for 2 weeks. If it helps I am to continue the same dosage an additional 2 weeks (making it a month) an then taper down. If it doesn't help after the 2 weeks I'm supposed to begin Methotrexate.
I would love to be prescribed Rituxan and hopefully get my life back, but the way the system works here it won't be easy. The first step would definitely be finding the rheumatologist you described.

[Jasper]

I don't know how common the MRIs and ultrasounds are. I have not had them. My Rheumatologist gave me the sero-negative diagnosis based on other observations, symptoms, and how I respond to treatment. The only reason I suggested it and posted that link is because your Rheumatologist wants some definitive proof that you have RA and the ultrasound and/or MRI might give him the proof he needs, if he knows how to read them.

I don't know why he would say he has no idea what is causing your joint pain. Joint pain is common in people with Sjogren's. So are other AIs such as RA and Psoriatic Arthritis. However, he obviously must think there is inflammation or he would not have prescribed Prednisone.

Methotrexate works well in some people. I was never on it because I cannot take it due to other medical problems. I did try Imuran and Cellcept, however, neither of which worked for me. It is a matter of trial and error. At least he is willing to try Methotrexate. Maybe it will work.

[Sharon]

The rheumatologist does think I have an additional AI condition other than Sjogren's
but doesn't know what it is since as far as he can determine none of the AI's fit my specific pain symptoms and joint deformity.
I would be hesitant to try the Methotrexate since another rheumy warned me it would ruin my fertility forever if I took it.

[markt]

So... I may be talking to my Rheumatologist about trying Orencia instead of Rituximab in the near future (just to see what he has to say), as I recently ended up with a sero-negative RA diagnosis. 

I have read many things about both biologic medications, good and bad.  That said, I am not really sure how to go about choosing between the two... and knowing how to present a desire for the best choice to my Rheumatologist. 

What I do know is that Rituximab has helped greatly in the time I have taken it... and I have read ACR study abstracts that similar improvements in both RA and Sjogrens symptoms have been achieved with Orencia.  But I am not at all sure how my Rheum, or even I myself should go about deciding the best treatment going forward...

Has anyone taken both, or have any insight to share? 

Regards,

Mark

[Sharon]

Hi Mark,
That is an excellent question and one I struggled with myself since I ended up with a diagnosis of seronegative RA as well as seronegative SS.
My rheumy suggested Rituximab but I requested Orencia (which is nearly the end of final stage trials in the upcoming months).
Here's why:
1- I am hypersensitive to many things and didn't want a med in my system for 6  months that I didn't know how I'd react to. I was also fearful of how I'd react to the IV. Orencia can be taking in subcultaneous weekly self injections.
2- From my understanding, the effects of Rituximab wax and wane for the 6 months between sets of injections. I prefer a constant, more predictable effect.

That said, if the Rituximab is working well for you I don't see any reason to switch treatments. These biologicals take time to build up in the system and give the full effect and you'd be starting from zero with a med that you may not even have a favorable reaction to. Relief on either of these biologicals is not guaranteed.