I'm curious to hear from anyone who was originally diagnosed with seronegative RA (negative Rheumatoid factor), how long you've had RA, what your disease progression has been like and whether or not (and when) you "seroconverted" to become RF positive.
I was diagnosed in June 2008 (4.5 months ago) after six months of pain and steadily increasing inflammation. The first blood test I had was seronegative for the RF factor. The content I pasted below was from a site I found online but I'm curious to hear from "real" people. If you are seronegative has your disease progression been more gradual and/or less severe? I'm the type of person that likes to know as much as possible and am wondering what to realistically expect from this disease. My outlook has been mostly positive but the more I read I'm wondering if it will stay that way after reading about people who've had RA for years with steadily worsening symptoms.
"Seronegative RA is a distinct, though usually less aggressive" (but not always) "form of the disease". Many specialists believe that patients with the manifestations of RA, but are RF negative are "in an early phase of the disease spectrum...some eventually do seroconvert", ie become RF positive. These patients who do convert from negative to positive as their disease progresses "have courses parallel to those of initially seropositive patients".
Hey! I am seronegative now for 2 years>> I was diagnosed while continued pain and stiffness while training for a marathon.. I am a physician and noticed the early am swelling of my hands.(even took a picture cause as usual my appts were in the afternoon when the swelling had pretty much subsided)... my labs were all normal but as stiffness,pain, and fatigue set in i knew something was wrong. 2 years later I am just trying to work a full day in my clinic as best I can.
I had side effects with sulfasalazine amd plaquenil but actually reached remission for about a year on methotrexate and arava. Recent flare has caused me to take a leave and start Humira..As you I dont understand cause I feel that if my labs are all normal my RA should not be this progressive....my Rhuem says each case is different and there are always exceptions to the rule....thats why its important to pay attention to the patient and not the labs...
For 6 years I have been tested and retested for RA, lupus, carcinoid tumor, etc., etc....ad nauseum. Yesterday, in spite of obvious joint swelling, loss of strength, neuro deficits and a chronic (now acute) unspecified type of auto-immune colitis, I still tested negative in RA, ANA, CRP, sed rate, etc... My rapidly declining health cannot be verified by bloodwork. At what point does a physician take a patient seriously (albeit medically unique), stop treating one as a nut-case and move forward with a diagnosis and treatment before it becomes totally disabling? newlou
Thank you for sharing your story. It is encouraging, oddly enough, to hear of someone else who shares the same history--although I certainly wouldn't wish it on anyone. I, too, have had RA for 3 years but my labs always come back "normal", but I have almost all the clinical signs. When they say seronegative RA is usually less severe, I know that doesn't apply to me. I am now on MTX and humeria but no improvement yet. I have reached a point where I cannot complete a shift (I am an RN) and have applied for disability) but I am sure the neg labs will be used against me. The pain is unrelenting and I am having trouble learning to cope with this new life.
Go. To. Another. Physician.
I couldn't believe I wasn't the only one when I read this post. I still can't. Seven years I have been going through this nightmare! Tons of doctors who either ignore me, call it depression, or make futile attempts to help then give up. I actually had a hand MRI in April of 2008 that showed multiple erosions which earned me the diagnosis of RA, but every Rheumy I see says "its very mild and doesn't explain your symptoms".
Lately, I have developed a freaky rash, am losing all of my hair (I finally figured out how to get their attention with this one...bring it in and show them how much you lose in one day...doc's jaw dropped to the floor! Course I won't need to do that much longer...I will be bald in a month at this rate.) I have had a fever since April of 2007, swollen lymph nodes, extreme exhaustion and weakness that keeps me home bound about 7 weeks out of 8.
I decided I was going to go to Mayo Clinic in Florida and am typing this from the hotel room I am staying in down here. Most of the doctors are intrigued by me...not the rheumy who said I have no Rheumatologic disease what-so-ever (without seeing a single xray, blood test or anything). I will be complaining about him in the morning and requesting a new one. Any doctor who says the word Fibromyalgia in the first two min of a conversation is worth nothing to me.
One thing I do have going for me...a positive RF. All the others are ALWAYS negative. So far, so good down here. I hope it continues that way. I will post a follow up when I know more.
My adventure started 8yrs with pain in my right shoulder. Ended up getting it scoped and was told it was pretty much destroyed. He also said the other shoulder was probably the same and it went down hill from there. I saw a rheumatoid doc and he thought i had lupus, after a ton of blood work. I started running a high fever for about a week and thought i was going to die. one night I went to sleep healthy and the next morning I woke-up sick. I couldn't work anymore. I was stiff, my whole body ached, my joints hurt and running fevers. After the first several yrs of drs and no real plan from them I had to get my first joint replaced. A yr later another joint got replaced. Another surgery on my shoulder and a yr later it got replaced. So I am now living with 3 replacements in 4 yrs and in need of 2 more. I am only 55, so this adventure started when I was 47yrs old. I moved to L.A. a yr ago and my new dr told me that I did not have lupus but seronegative r.a. but mine is very agressive. They now have me on Orencia,methotrexate,celebrex,plaqunil(sp),muscle relaxent, and pain killers. He is trying to stop it from getting into my spine...cauce when it does that it won't be good. The dr here told me that lupus and seroneg test postive in the same test so they have a hard time knowing which one I had. I have also been told that I could have both because they can overlap so I think only god knows what I have. I haven't heard of anyone that has had so many replacements in such a short amount of time....if anyone has a story they can relate please let me know.
I am sero negative but have quite severe symptoms progressing all the time and have had a hip replacement also expecting to have the other one done and both knees
I too am seronegative RA with severe symptoms. I'm curious if anyone else has swan neck deformity on fingers and is seronegative, and if anyone else has this and is less than a year since onset. I would think this is quite aggressive, but have no data to compare it to.
I was just diagnosed seronegative 2 months ago. My wait has been long sick for 5 years or better. I went to my PCP my harnds were huge and red-Hey he believes me. My CRP was trough the roof. NSAIDS and steroids for a month and a rhuemy.I saw the rheumy-he tested my blood again -CRP still high even after a month of steroids-hands envolved along with every major joint except my back(BLESSING). I walked out with my diagnosis and so medicine. I am sick alot I'm profoundly tired. The progression for me has been down hill. I am trying to hold my head up. I also am interested in the "less aggressive " thing. I am thinking if this is less ...I'm sunk.
Your comment of 'Hey he believes me" is not uncommon. When patients are seronegative and the clinician depends soley or mostly on lab results and refuses to investigate further, it can be devastating to the patient. I went to 5 different Rheumatologists. The first one I went to I had to leave because of insurance issues and he was the first one who got it right. Sero - neg RA. It took two more before I was again diagnosed and put on a correct regimine. Most lump you into the non specific group or into a Fibro group where Fibro is a distinct and sometimes accompanying syndrome. One actually looked at the tests and said something like Oops, nothing wrong. Good luck to you. I hope you feel better.