What is this particular pain?

[Sharon]

I've developed pain in my joints which worsen considerably following usage.
Especially in hands, wrists and ankles.
This prevents me from doing any physical activity and limits my functioning
since everything makes the pain sooo much worse! 
Can this be explained by either SJS or RA?
I've been diagnosed with RA too, but nobody in the RA groups seems to experience this particular form of pain- they're all exercising.

[SjoGirl]

Sharon there are forms of arthritis that target the hands and wrists (maybe ankles too). I know because I had xrays and ultrasounds done on my hands and wrists. My rheumy's assessment is that the inflammation my joints is from SJS. He did say one might also call it sero-negative RA (my RF factor is negative, always has been, but I have symptoms similar to RA).

My wrists and hands ache and middle finger joints swell at night. I have bone spurs on several fingers, a sizable one on my left pinkie (that one hurts and gets inflamed) and a big spur and a cyst on my right thumb. I am seeing a hand surgeon later this month about my thumb and am starting Immuran for the inflammation.

[Sharon]

Thanks SjoGirl- Do your joints hurt much more after you use them?
I too have a negative RF but x-rays revealed cartilage thinning, joint deformities and a cyst.
How can a hand surgeon help with your cyst?

[susanep]

I also have all of what you describe. They hurt more as I use them.  Fingers, wrists, knees, ankles.

susanep

[Sharon]

Susan- Anybody give you a diagnosis on this issue?

[irish]

Sharon, You aren't taking any med to reduce the bad inflammation in your joints. I was off my Plaquenil for about a year because it made my GERD worse and just started back several months ago. I have had arthritis in my feet, hips, back, fingers, wrists and shoulders and it has hampered my physical activity a whole lot. The pain is just now starting to lessen and I know it is the Plaquenil kicking in again. The inflammation we get in our joints whether from RA or Sjogrens is inflammatory and usually takes more than an OTC supplement to curtain it or stop it in its tracks. Irish

[Sharon]

Hi Irish- I have tried all the DMARDS prescribed to me and could not tolerate them.
The NSAIDS worked for a short while and then just stopped working for me.
The Prednisone actually helped alot but only at high dosages of 20mg which I could not sustain.
I was tapering Prednisone for the past 6 months.
I'm currently on Orencia which took a long time for my insurance to approve (after I threatend legal action and got a lawyer involved) but it takes 3 months to kick in (supposedly)!
I obviously need to find the right med to treat the ongoing inflammation.
I have an appointment with a new rheumy this week and he comes highly recommended.
I am so confused over the varying diagnosises I've been given and I really need someone to sort things out.
My pains have been attributed so far to: fibromyalgia, SS inflammation and now to RA.

[ghostkiwi]

I have this same issue. I can't really do any repetitive motion(made working out and being a baker very difficult), or even just sustain a bent joint for long periods of time. My elbows, hands, and knees are the worst and I went to my rheumy after I couldn't move one of my elbows for what turned out to be a month and she ran a bunch of tests but she couldn't find a cause so she said it must be from the inflammation caused by the sjogren's.

[Sharon]

ghost- I couldn't imagine being a baker in this condition!

Strange how difficult it is to get this issue properly diagnosed.
I will update you all after my rheumy appointment this week.
Hope he will have some answers for me!

[MAT51]

I was originally diagnosed with RA, now rediagnosed with primary Sjögren's. For two years my hands, wrists, feet, ankles and knees all took turns to play merry havoc. I was put on Sulfasalazine and then Plaquenil and Methotrexate. Finally I could tolerate none, no Imuran. All I can say is that Sjögren's can mimic RA very well indeed but the difference is that it is usually non erosive and there is less visible swelling. I couldn't use my hands much at all prior to methotrexate. I did have some pain return inmy knuckles that caused my hands to lock overnight but Cellcept seems to have chased this off. I don't know if mine was worse on activity - activity was impossible when it flared. At one stage I recall having to take stairs sitting on my backside because of the pain in my knees and ankles.

[Sharon]

That's wild MAT51...I don't have visible joint swelling but I have severe arthritic changes of the joints and a cyst....
Did they ever give a name to your specific rheumatic pains (other than "SJS RELATED")?

[MAT51]

Yes they now refer to it as "historic inflammatory arthritis". Alternative labels have been polyarthritis unspecified and "arthrlagia". For me it was just another stage in living with Sjögren's. I have lots of osteoarthritis too but I manage it well by eating like a paragon of virtue (AIP diet) and moderate exercise daily. X

[Sharon]

I'm also doing AIP but it doesn't seem to be helping anymore.
I'm unable to do any exercise without paying dearly for it with flares and increased joint pain.
Have you tried a biological?

[MAT51]

I think this does sound like some sort of inflammatory arthritis Sharon. Do you have Psoriasis at all? Even if you don't I wonder if it could be PsA - or perhaps it is RA after all?

I live in Scotland, UK and never met the very strict criteria for Biologics in terms of swollen joints. If my Sjögren's starts to affect any of my organs or affect my CNS then I would be offered Rituximab/ Rituxan.

[Sharon]

I don't have Psoriasis. I was also required by insurance to have swelling present for the RA diagnosis which gives me the biological, but the x-rays came back so bad they were finally convinced. Being represented by a lawyer against them also may have helped getting the biological approved.
In any case, I'll be presenting the x-rays and symptoms to a new specialist tomorrow so it will be interesting to hear how he diagnoses it.