Me again: I’m a bit upset as I’ve just received a copy... - NRAS

NRAS
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Me again

barbieg
barbieg

I’m a bit upset as I’ve just received a copy from Consultant about my last appointment. The first thing I noticed was she now says I’m seronegative when I’ve always been seropositve. It seems my inflammatory markers are normal ESR is 11 CRP 4 and Rheumatoid factor and anti-CCP antibodies are negative. I’ve had the worst year ever with painful hands and shoulders plus awful stiffness and fatigue . She says she has put me on a trial dose of 7.5 Methotrexate for 3 months , I’m also waiting for an appointment for an ultrasound on my hands and if there is no sign of active synovitis she will take me off the Methotrexate. She concludes it is my Fibromyalgia that is causing my painful hands and shoulders, but having been diagnosed with Fibromyalgia 30yrs ago I know my body and the difference pain wise between RA and Fibromyalgia.

9 Replies
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I always wonder about the thyroid function in cases like yours. Has it been checked? Just recently heard about a friend in UK that had the same situation and was offered mtx but turned to a good endo and was given thyroid support and the inflammation disappeared. It is actually quite common that thyroid problems give the same symptomms as RA and it is really important to check this before starting mtx since it actually makes the situation worse if the thyroid has problems. But what is important is to have the complete thyroid panel done not just TSH. Good luck. Simba

barbieg
barbieg
in reply to Simba1992

My mother had Thyroid problems and so does my son so I have had mine checked. It always comes back normal though.

Simba1992
Simba1992
in reply to barbieg

Have you had the whole panel done? You need to have the TSH, T4 and T3. NHS I think only allow the THS, which by far does not tell the whole story, you need to have T4 and T3 as well. Often the problem lies in the conversion of T4 to T3. Many have found great relief in adding Just T3. But you really need to know your levels. You can have it privately done. Healthlock has a very good thyroid forum where you get very knowledgeable help with initial interpetation of results.

barbieg
barbieg
in reply to Simba1992

What is T4 and T3 please?

Simba1992
Simba1992
in reply to barbieg

They are thyroid hormones. Here is more thorough info.

endocrineweb.com/conditions...

You have my sympathy, I'm seronegative too, bloods completely normal except low white cell count, not DMARD induced. Trying to get help and understanding is difficult, brain fog and fatigue have been by far my biggest problems. My feet , hands and neck have been my big joint problems, but now my shoulders and wrists have joined in too. MTX has helped, but my quality of life is poor.

Unfortunatley as soon as rheumatology sees negative bloods the odds are stacked against you being taken seriously, despite such large numbers of people being seronegative.

I hope MTX helps you. Do let us know how you get on ?

barbieg
barbieg
in reply to Mmrr

Thank you, I’m upset about it as I realise I have a fight on my hands and am feeling so low and tired. I will fight it though as I know my body. It’s just tough after losing my darling so suddenly nearly 2 yrs ago. Things seem much worse when your on your own.

It can happen, antibodies are a changing component of your blood and after 10 years+ on drugs this can have influenced it.

Personally I wouldn't waste time thinking about it - it's happened so it's a fact I'm afraid. More important is to communicate to your doctor that you don't feel that your pain and stiffness is purely fibromyalgia. Have they done x-rays to check for erosive damage, or signs of osteoarthritis? Has the doctor discussed osteoarthritis wth you?

And can you track your pain so you can give more detail - is it worse morning or evening? Does it get better or worse when you are at rest? Are there things that make the pain worse - stress, tiredness, particular movements?

barbieg
barbieg
in reply to helixhelix

I had xrays on my right shoulder and both hands last month and am waiting for an appointment for ultrasound on my hands. She didn’t comment on the x rays but did infer that when I had the ultrasound on my hands , if it didn’t show any signs of synavitis she would stop the Methotrexate and conclude it was my Fibromyalgia. That’s the bit that upset me . My hands and arms and shoulders are a pain in the night when I try to move, they are really painful when I get up and my hands are really stiff too. They last most of the day but ease off once I’m sitting in an evening. My left foot has also decided to join the party too. I just feel as though I’ve got a fight on my hands . Thank you.

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