Seropositive now Seronegative...has this happened to anyone else?

Today I saw my GP to get paperwork signed so I can go back to work part time. I am feeling so much better now the mtx has kicked in. :) Anyways my GP said my RA has changed to seronegative. I asked if that was normal. He said he had never heard of it before and that he will talk to my new rheumy about this and get back to me. So....has anyone on this site heard of seopositive turning into seronegative?

47 Replies

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  • If your GP has never heard of this......if I were you I'd get my blood tests repeated!

    Glad you are doing well on Mtx.

    AC

  • Yes I was kinda stunned when my doctor said he never heard of this. BUT I like the fact that he is honest and is seeking the answer. I would hate for him to lie to me and "lead me down the garden path". I respect him.

    Maybe the answer is another blood test.

  • The test is an antibody test. Just means that your level is now below what they regard is "normal". The levels varies.

  • That makes sense to me oldtimer. I am feeling better. Thanks for your reply.

  • That's odd because I just got copy letter from my rheumy to my gp saying the same. I don't know what it means either. It showed on my blood test after I had left my rheumy so couldn't ask. I will try and find out what it means. GPs are not really that knowledgeable on RA in my experience. I am thinking its a good thing but have no idea. X

  • You too Cathy777 ? ?Strange....Please keep me informed on what your GP says. What oldtimer said makes sense to me.

  • No I didn't understand that so I looked up on RA site and it kind of explains it. Whilst I understand it better it doesn't really mean its better or worse to be either positive or negative as you still get RA symptoms. I was not benefiting from just methotrexate and was put on bios 6 months back so this may have an impact on this change. X

  • It probably has. I can only imagine that RF not showing up possitive can only mean a weakening of the disease. How is your CCP, that tells you more of the situation?

  • Good question Simba. My result 2 years ago was 11. It is now .05 . I copied and pasted my results

    Reference Rate is < 3.0

    My results is < 0.5

    NEGATIVE

    A negative CCP antibody does not exclude

    rheumatoid arthritis (RA) as this test is

    reportedly negative in approximately 25%

    of RA patients.

    --------------------------------

    Did 17.5 mg of mtx make me seronegative now?

  • If both your RF And CCP are negative it leans more towards OA you would imagine (?) CCP is not much affected by treatment, so I have understood. What about your other markers?

    Have a look at Kai's posting today. There is a presentation about RF and CCP.

  • Since my MTX has kicked in, I have no pain and my swelling is going down. Very strange. Maybe my RA is "just going away" like my MS did.

    I'll check out Kai's post.

  • Or perhaps you never had RA? What were your markers when you were diagnosed?

  • I was RF+ and my CPP was 11. My lab says now my CPP is 0.5 and I'm now RF-. I see my doctor next week. I need to question him.

  • Yes You really do! Keep us posted. Good luck😊

  • I've never been tested again since diagnosis, so no direct experience. But I agree with oldtimer. Antibodies do fluctuate as they are your body's response to things, and not a permanent fixture in your blood. So if the RA is better controlled it is logical to think that it could mean that your body no longer needs to produce antibodies in significant quantities.

  • The only reason I was retested was because my new rheumy was appalled at my old rheumy's non - treatment plan. So he wants me to start at the begining. He is ordering me more xrays and a mri (because of my past with ms).

    So he upped my mtx and lowered my sulfa. My new rheumy almost fell off his chair when he heard my sulfa was upped to 8 pills this past summer. He says my wieght does not support 8 pills of sulfa.

  • Thank goodness for new rheumy! I was on 6 sulpha pills (3g) for a while to get me controlled, but my rheumy said she was only going up that much because I'm big (tall & well built, but no longer overweight happily) and prefers her patients to stick to 2g. So 8 pills sounds a lot!

    But hopefully this new one points to a brighter future for you.

  • I like my new rheumy too. He is on the ball.

    I am 5'8" and I have gained 20 lbs this year. I now weigh 175 lbs. He says 8 tablets of sulfa are sometimes used for people over 240 lbs.

  • Well I'm 5' 9" and 165lbs, and 6 pills was quite enough for me! Now down to 4, and hope one day to go lower.

  • suzannedale , that is terrible!! Overdose of medication is a very serious issue, it can make you worse. I am glad you have got a new rheumy to recheck your situation.

  • Yes, I'm glad too. My ra was snowballing this year. I had to stop working, couldn't walk or dress myself as my old rheumy just kept upping the sulfa. My GP was upset with him and encouraged me to ask for a second opinion from a rheumy.

    My new rheumy is investigating my symptoms and running a battery of tests including a MRI .

  • That's interesting. I wondered why I was instructed to take a dose increasing to 4 a day, when others were taking more. I thought it would probably be increased at my next appointment, but I only weigh around 126 lb (5'6") so maybe this is enough.

  • My new rheumy says 4 pills a day is the average dose. He claims 8 pills is only used for obese people. Eventhough I gained 20 lbs, I still am not considered obese. I never had side effects with sulfa until i increased to 8 a day. I only took 8 pills a day for about a week. I went down to 6 without my old rheumy's permission. I don't like to go against doctors, but I could not tolerate 8 sulfas.

  • You are very brave on that. Luckily it is a right thing to do. I will not go against my rheumy too because I trust that they know their job and I know not enough to decide anything.

  • I sold alcohol for a living ....so....I don't think knowing the difference between a syrah and a primitivo qualifies me for medical knowledge...... :) But deep down inside, I knew something wasn't right.

  • Still that is a very dangerous thing to do. My suggestion is to go back to your doctor and question him. However, to have second opinion is the best thing to do when you know deep down something have gone wrong.

  • There is a research article at onlinelibrary.wiley.com/doi... which explains this. (I downloaded it last year, but struggled to find the original link again.)

    There must be at least two different RF tests though. The usual one giving a figure, and the other expressed as a titre. I know this because I had mine tested privately and the former one (latex) came back as negative (previously positive), but the one I was unfamiliar with (RAPA) came back positive. So I was completely confused!

  • Thanks for the link Em13 . This is a very interesting read. I'm going to print it out so I can go over it again.

    I really am looking forewards to my rheumy appointment next week.

  • I have read and/or downloaded lots of RA research papers. Can't always say I understand them though!

  • I too have spent alot of time reading RA research papers. I love deciphering them...yes yes, I'm a geek :)

  • I started with RF and CCP negative, that were what my rheumy told me after my blood work at the first appointment. I did not get a copy of the blood work at that time. There after I insisted to have a copy of my blood results. However, there is no further RF test but CCP was tested again after 10 months and it continue to be negative.

    During the very first visit, my rheumy told me that even my RF and CCP markers were negatives, it did not mean I was not a RA patient because my whole body was inflammed and my figures were bent in, my shoulders in great pain, my ankles, knees could not balance my body, I could not turn my neck and my body naturally. The RA hit me suddenly and aggressively within the few weeks and I collapsed.

    My rheumy said RF and CCP negative meant once the disease was in control, the chance of flare up would be very much lower than those seropositive patients. I thought I was lucky then to have seronegative. However, I will ask him again during my next visit after I read more online.

    Here are the good links on seronegative, seropositive and spondyloarthritis for better understanding that I just read.

    rheumatoidarthritis.org/ra/...

    healthline.com/health/rheum...

  • Thank you Amy_Lee for the links. I was diagnosed 2 1/2 years ago as seropositive. Now seeing a new rheumy, I am seronegative. Strange...

  • This is really curious if both RF and CCP have been negative all the time. Your symptoms of inflammation and pain can fit many other AI conditions as well.

  • Forgive me of not knowing enough, may I know what is AI conditions? I will Google when I know the name of AI to see if I should ask my rheumy.

  • AI. = auto-immune

  • PMR for example has very much the same symptoms and one of aids for differential diagnosis is the lack of RF and CCP antibodies. I thought in the beginning that I had PMR but having high CCP ruled that out, sadly.

  • Dawnag , thank you. I thought so. Seronegative and seropositive are both AI, hence I thought Simba1992 was talking about another kind of disease name that I yet to find out.

    Simba, I yet to find out what is PMR, this is another new disease to me. Just read up a bit, I don't think this part fit my symptom:

    "Polymyalgia rheumatica (sometimes referred to as PMR) is a common cause of widespread aching and stiffness that affects adults over the age of 50, especially Caucasians. Because polymyalgia rheumatica does not often cause swollen joints, it may be hard to recognize. It may occur with another health problem, giant cell arteritis."

    My whole body swelled up, especially around my joint areas. PMR does not often cause swollen joints, this is the part that does not fit in. I will read up more. Anyhow, they are all auto immune problem and no cure for that too.

  • suzannedale and Simba1992,

    I remember very well when my physiotherapist saw me the first time, she wanted me to turn round, I could not turn my body naturally hence I turned the whole body in one piece. My physiotherapist said that I turned like a machine, she wanted me to try to turn my body as naturally as possible.

    Those days my body was in great pain, my neck was in great pain too when I turned it naturally. After listening to the physiotherapist, she said if I wanted to recover, I must try hard though in pain, so I tried. Months later, I slowly made it more and more flexible and I am perfectly normal now. I believe mtx worked on my body too after many months hence the swell subside and the pain reduced therefore I could work on my body more.

    Really great experience though a very painful process.

  • Hi Suzannedale another question entirely-how long have you been on mtx before you felt well enough for work? 😊

  • Hi Barb66. I will be taking my 18th dose this Friday. I am not completely in remission yet, but I think I'm almost there. I feel like I need to go back, at least part time for my sanity. My GP signed the papers with the stipulation of the appoval of my new rheumatologist. My OH nurse says that we are looking at a January start.

  • Thanks Suzannedale nice to see you count in mtx doses too! I think I'm being rather over ambitious thinking I'll be back to work by January too as I'm on my 6th dose. I feel the worst I've felt so far today!

    Good luck with your return to work and please post to let me know how it goes xx

  • Yes, I count in mtx doses, just like I counted weeks in my pregnancies lol :) . I started to feel the benefits just before my 9th dose and I was ecstatic! I thought I would be in remission the next day. My reasoning was that since RA hit me hard overnight, then remission would too...that hasn't been the case for me. I did notice a slow and steady decrease in swelling over the following weeks. Except for the occasional low grade pain in my wrist, I am painfree.

    Just a few more weeks for you to get to this "sweet spot" !!

    Yes, lets keep eachother informed of our progress :)

  • Ahh that'll be just in time for Xmas and how did you do with side effects? At the moment I feel exhausted, sick and ill. :-(

    I'm on 12.5mg MTX atm increasing to 15mgs in a couple of weeks and 5mgs folic acid weekly. xx

  • This friday, I will be increasing to 17.5 mg mtx, and 5 mgs folic acid daily. The only side effects I have is sleepy the day after mtx day. No fatigue or sickness.

    Every rheumatologist has their own opinion on how much folic acid to take. Every country has it's guidelines on folic acid.

    I notice the NHS says not to take folic acid on mtx day. I live in Canada and Health Canada has no such rule, they are still debating.....so...

    ---my first rheumy said 5 mg daily folic acid7 days a week

    ---- my 2 nd rheumy said 5 mg daily not on mtx day

    ----- my 3rd rheumy said 1 mg folic acid daily not on mtx day.

    When I said to my 3rd rheumy that I take 5mg daily even on mtx day. He said that's OK, continue doing so as it is working for you and there is no definite answer to how much folic acid with mtx for RA. Health Canada is only definate with folic acid and mtx with cancer.

    Confusing isn't it?

  • RF can switch from negative to positive and back again. It really doesn't have any impact on the disease severity. Rheumatologists used to believe that seronegative (negative RF) had a milder prognosis, but this has been debunked. RF is just one factor when diagnosing RA, and these days, its not a very important factor at all. Many people are RF positive and never get RA. And some of the most severe cases of confirmed RA are RF negative. Ant-CCP is a more sensitive test, but you can still be negative there and have severe RA.

  • You need to look at the whole picture. Having negative RF and negative CCP does require more tests and analysis since this is in fact rare in RA. I think everyone of us diagnosed should insist on getting all the information that the doctor bases his diagnosis on. At least for me this feels more like beeing in control in a stressful situation.

  • You can be seronegative and still have an inflammatory arthritis. it is a bit odd to have been RA positive and then changed though. But what do I know? Nowt!!

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