90% diagnosed?

Hi everyone, I'm new to the site.

I'm a 43 year old female. I've been having some symptoms of RA for about 6 months. My doctor says he's 90% sure I have RA, and that I'll be back in within the next few years with more straightforward symptoms and labs. Until then, I'm to put up with it.

My pain is not excruciating, and my swelling is minor. I have pain mostly on my left side, but when it flares up, my right side hurts too. My left hand is my biggest trouble, along with my left foot and occasionally both elbows and knees. More often, my hips and the left side of my jaw bothers me.

I feel as though my swelling is between the affected joints, rather than around them. I have swelling between my knuckles, and on the parts of the finger between the joints, rather than the joints themselves. The joints do hurt, though.

My labs say minor inflammation and (CRP is a tad high, sed rate normal) and an ANF of 1:8 with a speckled pattern (a weak positive) . RA factor is negative.

I'm not convinced it's RA, but my dr says there's nothing else it could be. Lupus test was normal and I have no dermal symptoms.

Does anyone else have an onset like this?

7 Replies

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  • Hmmm, I have Psoriatic Arthritis and I had a similar onset. A couple of years (3? 4?) of joint pain, Sacroiliac pain that came and went.

    I had a big flare last year in May that sent me to the GP, who referred me to rheumy.

    5 Swollen toes both feet (sausage toes) and left ankle was the worst. Limped for a good six months. Swollen left wrist and achilles and elbow tendinitis too. Other problems I have had have been knee swelling, throat pain and severe uveitis most recently. I am waiting for script for Humira currently, have been on Mtx and Arava, 6 months, with good effect,on joints but my liver didn't like it.

    I had a mildly positive ANA 1: 320 speckled. No RF. Anti CCP negative. SED rate was elevated up to about 40 at highest, so not particularly high, and is mainly around 20 - 30, CRP only ever got to 12 and is mainly normal.

    I'm currently waiting for blood tests to come back to see if I am HLA B27 positive too.

    Initially the pain was severe and I was taking NSAIDS every day but it comes and goes. At present I'm on oral prednisolone for my eye.

    But importantly, I don't have one even small patch of psoriasis and have still been diagnosed with PsA due to symptoms - do you think this has been considered for you? Are your fingers like sausages (google dactylitis)

    By the way, I'm 49. Female.

    Edited to add; sorry I thought by doctor you meant rheumatologist but clearly others thought you were going from the advice of a GP. In that case I would also say see a rheumatologist post haste!

  • Welcome to the forum, im sure your info will give some of our members something to ponder. I would have said 90% sure would be more than enough to at least get a specialist appointment, bloods can be very indicative but there seem to be people that only show elevated levels if they flare badly. Early intervention can make a huge difference both in slowing onset and in prognosis after diagnosis. If it was me and knowing what i know now and how ive ended up following a lightning onset after a bad chest infection i think i would be knocking on that door again. I wish you a positive outcome.

    Blessings

  • Get yourself to a Rheumatologist......some GP's try to treat RA, most don't truly understand it, & despite all the their attempts to treat you with ineffective meds your joints could be suffering. I don't think they intend any harm.....it could be because RA appointments are very scarce in your area.

    If possible take some photos of your hands when normal & then when swollen for for the rheumy to see you are not exaggerating.

    It will probably take a while to get a Rheumy appointment, so ask ASAP.

    I know that sounds harsh, but as others on this site will tell you, you have to push to get RA diagnosed & treated & it does take up time to make sure you get the right treatment .

    Good Luck....hope you get a diagnosis very soon.

  • "Put up with it" and come back when it's got a real grip is the worse advice I've ever heard. Ask to be referred to a rheumatologist asap and know that there are response time limits your GP should be adhering to for this referral as s/he suspects RA and that is because the earlier it is treated the better.

    Also take someone with you so you have a witness because your GP is less likely to further mess you around with them there.

    All the best

    Ali

  • Okay - First off, I LOVE how when they told you to think of a clever name, you did - HA HA HA HA!! It's wonderful!

    Second, welcome to the nicest site you probably never wanted to be a part of =)

    Third, I think you will find here that everyone's onset, disease process and remission are all different. There are some commonalities, but many differences even though we really all do have RA, and probably a hundred different other diseases too unfortunately.

    I was diagnosed almost 7 years ago, and used herbs primarily to ignore it for the first four years (along with some pain control), then hit a wall in the form of several highly stressful events and that threw me into it.

    Since you are at a beginning of sorts, and not in high levels of pain yet, maybe talk to your doc about something for pain control, or take some NSAIDs for any inflammation (like Alleve) if you can. I personally cannot take it for more than a few days before it tears me apart, but many people can and it is wonderful to be pain free.

    Then, maybe look around here and see if there are diets that might be different than yours and help you a little? My husband I do Keto / Harcome (carnivore / high fat / low carb) because it is mostly carb free and we avoid things like wheat no matter what. Some folks do vegetarian or vegan, some do Paleo, and some do the Paddison diet. They all seem to work for the folks that choose them.

    I guess my thought here is that you have a chance, here at what might be the beginning, to maybe, potentially avoid the disease, or keep it from getting worse.

    And I agree with the others... Push the issue to get to a rheumatologist...

    Best of luck with whatever you decide to do, and let us know how you are?

  • Push to get a specialist appointment. I have joint damage because I believed my GP when he said just take pain killers and treated me as if I was wasting his time. You a least know what RA is.

  • Thank you all so much for your replies and your support! I have taken your advice and called my Drs office for a referral to a rheumatologist and got it, but not til May. I also started seeing my homeopathic dr again in regards to RA. She was me on an anti inflammatory protein shake, vitamin d drops and omega fish oils. Her mom has RA, and she's been able to help her tremendously. I'm also taking aquacise classes three times a week for great low impact fitness

    Thanks again for all your great advice!

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