Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I have been a member of this group for several months, but this is my first posting. I have been hesitant to share my story as my symptoms are so mild compared to most of the others in the group.
I am 48 years old and was diagnosed with sero-negative RA 2 years ago. I presented with sudden onset pain, redness, and swelling of the PIP joint of both middle fingers. Gradually over a few months many more joints in my fingers/hands became “tight” (stiff?) and tender, and occasionally swollen. The pain, thankfully, has never been severe or disabling. (Unfortunately the pain and swelling are much worse after I continue my usual activities using my hands, which I continue to do because the pain doesn’t stop me). I have been treated with prednisone (for the first year), methotrexate, and humira, which seemed to help in the beginning. After 2 years, I had really no change in my pain/stiffness – sometimes lasting all day, but still is never severe. I have also had persistent “puffiness” between my 2nd and 3rd MCP joints for some reason as well.
An MRI of my dominant hand was reportedly normal, so I decided maybe I do not have RA and stopped all my meds in May of this year. My rheumatologist OK’d that plan since he felt my seronegative status made that move less dangerous than for a patient with higher risk of damage. He said if this was RA, I would know it quickly as symptoms should worsen. Over this summer my symptoms essentially have remained unchanged, though I have developed some symptoms of Sjogrens (dry eyes, dry throat, voice fatigue, and salivary gland tenderness). I have an ophtho appointment is a few weeks to see if this is Sjogrens.
I am very frustrated with negative testing and sometimes feel like I must be crazy or something. I am very thankful the pain is not severe like that of many members of this group. But my main concern is the risk of longterm damage, especially after reading comments in some posts from people who are seronegative but have developed damage, deformity, and severe pain. I am stubbornly refusing to go back to my rheumatologist unless the eye doctor tells me I have Sjogrens. And at this point I am willing to bet those tests will be negative too.
I have also had persistent “puffiness” between my 2nd and 3rd MCP joints for some reason as well.
In fact, if you rheumatologist said that you were mild because of sero-negative - you need to find a new doctor! You may be mild in the end, just as some people with sero-positive RA are. But it is not because you are sero-negative.
I have Sjogren's and only recently talked to my rheumatologist about it. Probably 15 years or so I have had it. I was careful with my eyes, because my opthamologist kept nagging me about it. Turns out, I need to be much less casual about my teeth. Lucky I have had strong teeth, and I've also started doing the teeth hygiene to the point of absurdity! LOL
There really isn't much they can do about Sjogren's. My rheumatologist said he would send me to the eye doctor for a prescription for my eyes, anyway. Which reminds me, I forgot to ask him about that on my annual visit on Tuesday! Rats!
Anyway, it is frustrating not getting a definitive diagnosis, for sure. I was 2 long years in agony, while being told I didn't have RA at all, then another 5 years undermedicated. But that was me! I hope you figure it out. But be on the lookout for increasing flares. That would mean it was time to get back on the medication bandwagon, and quickly!
Primary Sjorgrens does cause joint pain, stiffness (and swelling, I believe.) You can check that out quickly enough by googling Sjogrens symptoms.
*** Ophthalmologists cannot diagnose Sjogrens. **** That is the job of rheumatologist and even they have trouble diagnosing it. My blood test for Sjogrens was negative but I have it BIGTIME!! The only SURE diagnostic is a lip biopsy. I never h done because my Sjogrens is secondary to my RA and I was seen at a Sjogreens Center. There are only two (last I checked) in the country - on e on each coast. I am fortunate enough to be within an hour and quarter ride to one of them. I had a salivary gland scan which confirmed the diagnosis.
An Optho can only test for dry eye and he will prescribe restates if needed...can also put in tear ducts in more severe cases of dry eye.
For dry mouth, there is a RX med called Evoxac that i take. I also like ACT Dry Mouth Lozenges (any drug store - by the toothpaste). I am not a big fan of Biotin products which many docs and dentists push for Sjogrens (cause Biotin pushes their products on these docs and dentists)
Dental care is a very important factor if you have Sjogrens, or even if you just have dry mouth (which can be caused by many meds). Saliva contains enzymes that protect us from cavities...less saliva production = more cavities! Brush well. I use an enamel building toothpaste and I use MI paste in addition. Regular dental checkups and cleanings are essential!!
I am thankful for mild symptoms - and really appreciate support, especially from others who are dealing with much more than I am.
a rheumatologist who is comfortable treating all types of RA.
I'm constantly looking at my fingers or hands though. I ask others, "Do they look swollen, red"? And I always get a "NO"! I asked my Rheumy for a follow up full blood panel work up & he looked at me a little weird. I said, "I just want to know if everything is still the same"? So he undertood & ordered it for me. His exact words were:
"RF came back negative, anticcp came back positive & inflammatory markers were all normal". Thats the part that's frustrating although I'm EXTREMELY grateful I'm doing fine, it's frustrating to get these positive/negatives.
And, of course, a magic potion.
I saw the ophthalmologist today, who said my eyes look good with no sign of an inflammatory process or any damage. I felt like "here we go again" with a negative result and no explanation for these frustrating symptoms. He said he'd go ahead and do the Schirmer test to be complete, and by golly he was a bit shocked when the test was positive. (After 5 minutes I barely wet any of the paper strip). He is starting me on Restasis, erythromycin ointment at bedtime (for the anti-inflammatory effect), and artificial tears.
I know many of you completely get the little bit of happiness that comes with a positive test result and the feeling that maybe I'm not imagining all these symptoms.
I will let my rheum know and I am sure he'll proceed with the additional labs that were not done with any RA labs at the time of my initial diagnosis.
But for tonight I am having a little sigh of relief.
However I imagine there are a lot of people who have experienced improvement like you (and maybe I had the opposite - in that my eye symptoms really seemed to get going after I stopped methotrexate and humira).
Hopefully you'll have good control of your RA symptoms and also be able to halt further eye and joint damage with your treatment.