Hey all! I have a question. As some of you know, I was referred to a Rheumy after my GP ran a RF test that came back negative even though I had been having RA type symptoms for seven months. During this seven month period I visited two separate GP's and a Neurologist and had every other possible condition ruled out besides RA. It was my neurologist who actually said that it looked like RA to him and suggested that I see a Rheumatologist. Due to the negative RF test done by my GP, my Rheumatologist diagnosed me with Sero-Negative RA a few weeks ago based on my history, visible joint swelling, symptoms and history and said that he felt that it was indeed RA but in the very early stages. He said that all my symptoms and complaints where "classic" of RA. He put me on 200mg Plaquenil twice per day. After he gave me the Sero-negative RA diagnosis he ran a CRP test. I just got the results back last night and the CRP test came back @ 1.1 which the nurse said was normal. They also ran a "RF3" test (I can't find any information on the web regarding what this test is) that they don't have the results back from yet. I know you can have a negative RF test and still have RA, but can you have "all" negative bloodwork including RF, CRP and all other RA related bloodwork such as CCP and ANA and still have RA?
I believe that I read somewhere that some people with RA never show positive on any labs. However, I haven't been able to dig this info up again so I wanted to double check with all of you. Any info would be greatly appreciated.
I was dx'ed 13 yeras ago with simular circumstances. Over the years to my knowledge the only true sign in my blood work is my SEDSrate which is a test for inflamation.
I also took plaquinel years ago myself. I spend many,many years on those considered weaker DMARDS and managed quite well. Thanks to continued treatment 13 years later my damage has been very little and my doctors are certain it's due to continuious treatment.
It has progressed and I have had to use stronger medications over the years.....but starting and continuing DMARD treatment early has really been to my benifit. Sounds like your doctors are on the right track as well. That's great news for you.
Good Luck.
I'm sero-negative. But, like you, I had severe joint-swelling, to the point where I couldn't walk. It was in the same joints on both sides of my body (although one side is often worse than the other) - it's not uncommon at all. Many GPs don't know it, though, and some rheumatologists don't, either! (or if they do know, they don't treat it).Thanks for the replies and info! I love this board. Everyone is so helpful and caring!
Fiona, like you my symptoms are symmetrical but my left side is worse than my right. However, so far my pain, stiffness and swelling is only in my wrists, elbows and fingers. I've only been taking the Plaquenil for two weeks so I haven't noticed it helping yet. I know that it takes 8 - 12 weeks for it to take effect. Luckily the only sides that I've noticed is mild dizzyness.
Lovie & Fiona - My Rheumy said the same thing, that with Sero-negative RA you need to start medicines soon to minimize joint damage. I guess I just wanted to check with others on this board and double check that in your experiences, all labs can be negative and still have RA based on swelling, signs, symptoms and history. I'm one of those people that doesn't like putting unnecessary chemicals into my body...lol. I'd hate to be taking medicine when it is unnecessary. After talking to you guys, it sounds like my Rheumatologist is on the right track!
Thanks Again,
Ryan
My blood work has been normal for most of 3 decades except for an occassional SED rate. I have bad damage in many joints that is exactly the kind of damage RA produces.
So yes labs can be perfect and you can be quite ill.
Ryan; Don't feel bad. After all these years I'll still ask my doctor "Are you sure it's RA?" It's hard to get use to the idea that I've been taking medication for this all these years and don't have a postive RA Factor.
I'm not sure that feeling will ever go away.
My sed rate has only ever been slightly elevated. My normal sed rate is 0-1, so elevated for me is usually still in the normal range. All of my other blood work has always been normal. All of my labs are neg and the RA showed up on x-rays, go figure.yeah; you can see my damage on x-rays and MRI's too. That does help with the confirmation issue some for me. oh 20% of us never ever have a positive RF factor. 1 in 5. That really is quite a lot of people.Thanks guys! That's what I needed to here, as it reinforces the idea that I'm not taking meds for nothing. It seems as though it is quite common to be sero-negative, at least for a while.All my tests come back negative. I have RA. And plaquenil can take very long to work. Some of the articles I've read say up to 6 months. Didn't your RD give you some low dose prednisone to help you out? Do you feel like you might need some pred to help you? If so, you might want to call your RD. Ta2d, I have the opposite of you. I am seropositive and high inflam[QUOTE=micheleb]Did the neurologist check for neuropathy? My fingers and wrists, among a list of other things hurt but I can't say that my palms have ever hurt. However, we all seem to respond in different ways.[/QUOTE]
Yes, the Neurologist did a Nerve Conduction Study to check for Neuropathy, the test was negative. However, this was done 5 months ago. I did a search a while ago on RA and it did say that Peripheral Neuropathy was a symptom of RA when inflammation is present in a joint such as the wrist. Is that what this burning sensation would be considered, "Neuropathy"?
Yes, from what I have read, neuropathy is often described as a burning sensation usually starting in the hands or feet. Dizziness, especially when standing or moving suddenly can be caused from a drop in blood pressure which can also be a symptom of neuropathy.
All my blood work comes out ok, my sed rate and crp are normal, yet I have a LOT of visuable swelling and pain which gets worse as the day progresses, instread of the usual it hurts worse in the morning complaint of most ra patients.
I am see a neuro doc on Thursday so will let you know what they say!
[QUOTE=anna_uk]RYAN, you said in one of your posts that you felt a little dizzy which worried me. i took plaqauenil when i was first dxd and after about 6 weeks it worked great for about three months, and then I collapsed (fainted ) with breething problems. the dizziness you mentioned reminded me of that bad reaction... perhaps you should mention the dizzyness to the rheumy just to check you should continue with it????? anna_uk london [/QUOTE]
Thanks Anna, I will mention it to m RD. I spoke to my Pharmacist regarding the Plaquenil when I picked it up and he said that "mild" dizzyness was normal. I will however mention this to my Rheumy.
Ryan
The burning sensation I used to get when I was little. They said that it was from swelling stretching my skin so quickly - as I never tested for anything neuro. related. So don't fear if you don't test, it could just be that.My hands were in a non stop flare from Jan. 1, 2007 - Jan. 19, 2007. Then, Jan. 20th - Jan. 25th I had almost now symptoms. My swelling went down, I could make a fist, type without pain and felt pretty much back to normal. I had hoped that even though I had only been on the Plaquenil for (3) weeks that my remitting symptoms were due to the med taking effect. Now, today - Jan. 26th both hands are in a flare again which really sucks. Just when I think things are getting better and all is clear my symptoms start again. Is this pretty much what you can expect from RA, good days or weeks and then bad ones? This will be my third flare in (7) months. My first flare, when I was still undiagnosed lasted about 5 months straight. My second flare lasted (3) weeks and now another is starting. This is definately going to take time to get accustomed to.
Ta2d,
I was diagnosed "officially" in Jan o7. I am on plaquenil and methotrexate. I doubt that the meds have started working yet. I was coming out of a flare before I even got in to see the rheumatologist so I don't even know when I will determine whether or not the meds are working. I totally understand how you are feeling.
I hate to tell you guys.....but those uncertain, unpreditable symptoms never really go away.
After all these years I have a hard time knowing what exactly tomorrow will bring. Although I'm now been taken off my Humira; even when I was on Humira there were bad days thrown in there as well. I'm never really been able to nail down exactly what triggers it. AND; just because today is a bad day, don't loose hope. Tomorrow is a new day and can be a lot brighter. I'm a little amazed at times the dramatic difference a day can make with this disease. It's truely enough to make you crazy.....and definately enough to make the people around you think you are crazy!! (Try not to let that one bother you)
If I had one bit of useful advise it would be learn now to expect the unexpected. Don't let yourself get too worked up over your bad days....and don't get overly excited about your good days. Take it one day at a time and try to keep a positive attitude through it all. I have no doubt that the way I've dealt with this disease mentally has gotten me through some of the darkest days.
Tad, the inflammation from the RA can cause the same symptoms as neuropathy. The nerves get compressed by the inflammation. You do need to talk to your doctor about this. When mine first started, I was instructed to wear wrist splints at night. This helped tremendously with the pain and I also use them when I'm doing any task that might put pressure on my wrists.
I have since developed neuropathy. Initially, I was seen by a neurologist that cleared me for everything several years ago. Now, it has become a big problem for me. So being vigilant and educating yourself is very wise. If the problem continues and your Rheumy doesn't offer any other solution, then you might want a referral to another neurologist. It is amazing the difference between doctors and what they are able to see.
Right now, I'm testing negative but really high on inflammation. My new Rheumy was not willing to treat my RA or admit that I had RA. He's a goner. I'm going to go with someone else. Unfortunately, he has taken me off everything but Plaquenil and MTX. This has me quite worried.
Deanna, if a rheumatologist tells you that you don't have RA and your blood work is negative, why do you assume you have it? I'd be dancing in the streets if I could get my doctor to tell me I don't have RA. For myself when two rheumys were telling me that I didn't have RA, I did have it. I am blood work negative but had I not pressed on for a good Dr. I would have much more damage than I have. We know our bodies and I knew that this could not just be Fibro.I was diagnosed with sero-negative RA three years ago and have had both my primary physician and another rheumy have agreed with it. Some rheumies however still refuse to diagnose RA without a positive RA factor, have no idea why. I was started on plaquenil right away and have had other meds added since then. I've been one of the lucky ones. I've had many symptoms and problems with many joints but so far very minimal damage which I assume is from having caught it and started treatment early. I have though added other autoimmune disorders to the list since all this started including fibro and raynauds.Scout,
I have 6 years of documentation, tests and films that do show I have RA. This doc is an idiot. It might be that I am in remission which is good except I don't feel good. I'm doing awful off of the MTX. I'm flaring, sick and in pain. My SED rate was still really high.
If I even for one second respected this doctor's opinion I might be happy. It did mess with my mind. Could the doctors, all of them, that I have been seeing be wrong? Could the RA not be in my joints? I just pretended to have serious heart, lung and eye problems? And since all my other specialists, especially the Ortho, are thinking it is RA that can only be treated surgically now, then I have to question his opinion. Or, my neurologist who thinks that the RA, Vasculitis and Sjogren's are destroying my nerves.
As Bonny said, I can't stop just because one doctor has this opinion. I left my previous Rheumy on the maximum RA meds he could give me. I do not believe that he was incompetent or endangering my health. He was too compassionate and too professional for that. This guy was rude, exaggerated test results to force me off my medications. He didn't even give a reason for why my immune system was destroyed. He flat out denied me any treatment for RA. He said all I had was FM and to just go back to work.
Scout, that's why I'm so upset. I feel like he is endangering my health because of him own problems. This doc is totally mad at me to the point that he wouldn't even explain to the pharmacy how he wanted to prescribe the 1 mg prednisone tablets that I needed to taper down like he wanted me to. The pharmacist was going, what in the world? She was pretty upset as she had never seen a doctor not know how he wanted it prescribed. I basically had to make the decision.
Another problem that we run into is that the meds we take lower the counts on the exact things that they are testing for so that makes it that much more difficult.I didn't know that CTuit. He pretty much refused to refer to all my previous records. He blamed me for not already having them in his office. He never asked for them. If can transfer my records for free once in this state. After that I have to pay for them. But all he has to do is have me sign a form in his office and a summary of my records is sent over to him. My other doctors believed me, but not him.You know CTuit many of us called sero-negative could actually be postitive since when we were Dx'd we are usually started on RA meds. Maybe the RA meds keeps the numbers lowered when in fact we may have turned positive shortly after symptoms started. In that case the statistics regarding sero-pos/neg RA would be incorrect.
Great thought CTuit!