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A possible seronegative diagnosis

Hello everyone,

I just joined this site. I feel so grateful to have a way to connect to others that are experiencing similar symptoms.. Thank you in advance for listening. I am 50 years old and most likely facing a seronegative arthritis diagnosis. All my blood work as well as X-rays to my hands, feet and a whole body bone scan do not show any signs of inflammation nor joint damage. The thing is that I present many of the RA typical symptoms. It all started about 4 months ago. I started waking up with very tingly and numb hands...yes..both of them. This happened out of the blue. At first I thought I was sleeping somehow clinching my fists but this went on for too many nights until I started noticing also some joint stiffness. I didn’t experience localized joint pain, joint swelling or warm joints, but certainly a generalized pain that kept me from closing my hands. This feeling would go on for 15 mins after waking up or so and after this time I would be able to regain movement without experiencing too much pain.. The pain would decrease significantly during the day but come back as soon as I would sit still for a semi long period of time. I went to see my gp right away. She run the typical blood tests and everything came back normal. I was sent to see a rheumatologist and he felt, by an initial exam, that I didn’t have RA. He requested additional blood work and the tests I mentioned earlier and everything came back normal. Just a few days ago he had me take 20 mg of Prednisone for 5 days to see if my symptoms would get better. I have to say I did feel better. My hands and feet were not as swollen nor in pain in the morning and I felt overall better. I was starting to feel depressed and somehow in a matter of hours I have to say I started feeling like myself again. I forgot to mention that all my joints had started to pop and almost hurt every time I moved (including my jaw). and this went away, almost completely, after taking this med. My treatment ended yesterday and I have to say that I am feeling slowly gettting back to how I was feeling just 5 days ago. I am feeling very scared and not too sure about how to proceed now. Something I feel may have so,etching to do with this is the fact that I stopped taking the pill after many years when I turned 50. I had been taking the pill to help me fight the insomnia that I experienced as result of entering perimenopause...at 42. Has anyone experienced something similar? I read that RA could be very much interconnected with a hormonal imbalance. Does anybody have any idea of what other condition I may have if this is indeed not RA? Thank you so much for listening and for reaching out. Sending everyone lots of support. Patrícia

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Hi Patricia! I’m sorry to hear that you’ve been struggling to get a proper diagnosis for what you’ve been experiencing! I can only tell you how RA started for me...I’m 51 and like you, entered menopause very early. Throughout my adult life, I’d have episodes of what felt like all over soreness, like I’d exercised really hard the day before, but I hadn’t. I’d also had sporadic joint issues, like flares of jaw pain, neck pain, knees, etc...I always felt like it was so random and unexplainable. As I approached my forties, these episodes got longer and longer in duration, to the point where I’d rarely have days when I wasn’t in pain. I had been to my doctor many times complaining of fatigue and overall soreness, but my blood tests were always normal. I was very frustrated, not understanding what was going on. I remember one visit to my doctor… I asked my doctor to refer me to a specialist because I thought that maybe I had fibromyalgia?? He basically laughed in my face and said welcome to your 40s! I was so upset that I fired him on the spot! After getting a new doctor, I again complained about the same symptoms. By this time I was post menopausal and I was always fatigued and sore! I was having intense burning in my hands and feet, something like you described. It was as if the blood in my feet froze when I sat for very long. (I would describe it like my feet are an ice cube tray that you needed to bend in order to break the ice). My new doctor ran some more tests...by now I was in my late 40s, and one of the tests revealed a high R rheumatoid factor. Hurray! My doctor said there was definitely something going on so she referred me to a rheumatologist. Initially my rheumatologist was reluctant to diagnose me with any kind of inflammatory arthritis, since I hardly have any visible signs of redness or swelling, although there is definitely pain, but she ordered a number of blood tests. One of them, the anti CCP test came back strongly positive. FINALLY I had a diagnosis because a high Rheumatoid Factor and a positive anti CCP test are strong indicators of RA. I was immediately put on DMARDS, sulphasalazine and methotrexate. I’m a year and a half into my journey since then and am feeling a bit better, but not quite there yet!

I can certainly sympathize with somebody like you who doesn’t have the blood results to confirm a diagnosis!! My heart goes out to you! I hope you can find the answers that you’re looking for, and the support that you need on this site!!

Xxxx

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It can take years for these diseases to completely show themselves. When I look back I realise that I had niggling symptoms years before I first went to a GP about them. So it is possible that you are just at a very early stage....

And yes I am sure that female hormones have something to do with this - too many of us first show symptoms around the menopause for there not to be a link somewhere.

A couple of thoughts. First did the blood work include the anti-CCP test? This is more specific for RA than the RF test. Also did they check vit D and B 12 levels? If these are very low they can cause similar symptoms.

Recently I also read a research paper that said that people in very early stages of the disease, and particularly women, have the best chance of finding that lifestyle changes will stop any further development of the disease. So stripping your life's of stress (not easy!), stopping smoking (if you do), keeping your weight within normal limits, daily exercise and sleep, and a Mediterranean type diet (basically high in vegetables and fish and low in saturated fats and sugars). Could be worth a try?

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Hi

I feel for you, I have suffered joint pain and stiffness for two years now and still don't have a diagnosis. Like you I've had several blood tests, ultrasound and full body scan which all where normal.

I've been to four different rheumys, a neurologist and pain clinic. No one have been able to give a diagnosis or pain relief. The only thing that worked for me was when I tried prednisolone. I am now waiting to go back to rheumy who will hopeful put me back on pred. I know it is not a good drug to be on long term but I just want some relief

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I feel for you!!

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Hi Patricia

Sorry to hear about your experience, and pain returning.

Good suggestions and sharing below, from others.

So many variances in how RA/RD is experienced but the best one to get a proper diagnosis is the specialist Rheumatologist.

Corticosteroids have a wonderful effect but will in the long term cause nasty conditions eg cataracts.

I am fortunate that RA did not strike me till seven years after I was right past menopause. And that a diagnosis was reached within one month of finally seeing a Rheumatologist.

Unfortunate, though, in that it is seropositive for anti-CCP and RF. This can mean not such a good prognosis.

But, having read about the effects of various foods/additives in foods, I avoid all soda type drinks, always. Never liked them much anyway!

The effects of soda/fizzy drinks can mimic arthritis.

I also cut out a NSAID called Celocoxib, after finding studies that showed same or better benefits (and none of the unwanted effects). This also means no need for Omeprazole.

What I take instead is:

Organic turmeric curcumin including bioperine

Boswellia (frankincense)

And I take two DMARD meds.

I am sure your own investigations and reading will guide to choices that suit you.

Boron and astaxanthin also protect joints and eyes, respectively.

Sincevtecent flares, and getting PIP, I bought CBD Oil, legal, and comes in different strengths from Grape Tree shops; Improve Me brand. It settled agony in my shoulder-collarbone-neck region!

Good luck with finding your solutions.

Angela

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Hi, I’m seronegative too and was diagnosed with inflammatory arthritis about three years ago. I was given a three month course of ever reducing steroids - I started in a big dose 60 mcg down to noth8ng over three months.

I could have had an injection but I opted for tablets as I’m a bit of a needle phobic and as I take other tablets every day I’m a good complier. When it was clear that the steroids worked - Believe me I was like Wonder Woman, the thing I noticed was the total lack of fibro pains in my neck and shoulders and they have really never come back which is amazing! As the steroids finished I started on hydroxychloroquine and I’ve been on a low dose 200mcg a day ever since. The downside for me was steroid induced T2 diabetes but I went low carb high fat and as long as I don't go back then my former carb heavy diet that’s sorted itself out now.

Have they said they will treat you long term in view if the steroids working? I had reached the stage if having to fit handles onto plugs to be able to pull them out and I had to use my knuckles to operate our push flush on the toilet, I had sore thumbs and my fingers hurt across my knuckles where you hold when you shake hands. I also had awful fibromyalgia type pains in my shoulders - I’d had them for years - and could barely move when I got up in the morning, I was so stiff. I’m still kind of stuff in the mornings at the moment, I think it’s the cold and damp weather. I’m on a low dose of hydroxychloroquine and when I told the rheumy I was a bit creaky at t8mes he said to take some paracetamol or ibuprofen to top up which is what I do. I do gentle physio led Pilates and that keeps me mobile too.

My hands aren’t damaged - the amazing GP who referred me on first visit said that if people are treated quickly you don’t need to see damaged hands these days.

I went totally gluten free three years ago in order try and reduce my thyroid antibodies - I’ve got loads of other autoimmune conditions and the arthritis was one condition too many for me - and going GF has massively reduced my thyroid antibodies and I’m windering if it is helping with the arthritis too.

My rheumy asked me if I wanted to be checked out for Coeliac Disease a couple of years ago but I didn’t want to have to go back to eating gluten for a diagnosis so I declined. He also thinks I’m developing Sjorgens but that’s as far as it goes.

Maybe you could get back to the person who prescribed the steroids and say that as they helped could you try something else like hydroxychloroquine.

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