Hiya Guys, Long time no speak, I am looking for advice for my daughter, her wrists are that bad in pain she can't even open a bottle, she went to GP , her inflammation markers came back 15 .8 , the normal range is 14
so they are saying its a normal test
what with myself having RA and taking years for it to be taken seriously
what should she do now?? any advice grateful
I'd be wanting a second opinion. Above normal range is not normal.
I'd phone the NRAS helpline for a chat and then go back to the GP surgery for a second opinion. It might help to take someone independent with you if you know anyone you can ask, especially if they are the sort of people who can look official when needed.
They should be working off symptoms and family history as well as blood tests. Did they do blood tests for things like anti dsDNA and anti-CCCP to check for lupus and RA? If they didn't insist they do.
I would go for a private rheumy consultation if you can afford it.
I went for a private consultation, while on the nhs waiting list…best thing I did.
How old is she ? And might it not be a straightforward calculation and if the GP says it’s normal then another test in a few months time might say different. In any event if the GP says no what can you do unless you go private but even then it could be a waste of money because some times RA to be treated has to meet certain criteria and she may not. I would suggest getting another test in 3months and take it from there.
Thanks also medway-lady, she is in her 30s, I just dont want her to have to suffer as long as I did before someone takes her seriously, I went nearly 20 yrs being told constantly by GPs it was fibromyalgia and nothing could be done for me when it was RA.
Hi Veronica,
It makes me so mad when the doctors play the Fibromyalgia card! I think it’s a lazy cop out for them.
I do have both RA and fibro, with the latter being diagnosed ten years ago. However, I do wonder if RA was starting way back before I was diagnosed. The symptoms do crossover but the blood tests show a completely different story.
I agree with what others have said, get her bloods checked again and maybe a second opinion. I hope your daughter can get the help she needs.
Kati xxx
Thank you so very much everyone!! you have all given grate advice Thank you again.!!!
Can only agree with with everyone. It's heartbreaking when it's our children. She is lucky to have you Thinking of you both.🌻
I was having a moan to a GP friend of mine about my own GP who kept refusing to refer me. She said that many GPs still go on the 'three strikes your referred' rule of thumb. They assume that it will be a one off pain which will resolve on its own, so they refuse to refer. But if you keep going on the third GP appt the GP will finally refer. And she was right, my GP silently referred on the third appointment; I went in expecting to be brushed off again and he just silently without even letting me say my bit I had prepared referred me.
And being a GP didn't protect her from this, her own GP refused to refer her and she ended up in hospital for 6 weeks and nearly dying!
So keep going back, eventually they will have to refer.
I agree with gnarli. She needs a second opinion.
Just wanted to say that this could be other autoimmune diseases rather than RA so I’d advise slight caution about fixing too much just on RA.
Mine started exactly same way in my wrists in mid 40s. I couldn’t turn key on off in ignition or work - lived in splints, they felt fractured. My inflammation markers were high, Rheumatoid Factor elevated so GP assumed RA as I was already hypothyroid. When I saw the rheumatologist he thought might be menopause but later diagnosed seronegative RA - only ever tested me for RF and anti CCP (negative) I was put straight on methotrexate and sulphasalazine and later Hydroxichloraquine. No one tested my ANA or other markers for Lupus, Sjögren’s or systemic sclerosis or Vasculitis. Given how badly my thighs and knees were affected my GP did test for another initially but think it was just sarcoid.
As time went on I got sicker and didn’t tolerate the meds so had to stop and take steroids instead. They still inisisted that it was RA although my GP had become concerned about rarer others and sent me for second opinion with a chap who added in Raynaud’s and Sjögren’s.
To cut a long story short this year I’m finally diagnosed, age 60, with systemic sclerosis/ Scleroderma and Ehlers Danlos Syndrome and associated Sjögren’s, Raynaud’s and Erythromelalgia . The latter, EDS, is genetic from birth and has caused all manner of problems throughout my life along with misdiagnoses because things have presented very atypically. So RA was just a symptom of this rarer mix and with hindsight was probably actually my EDS or Polymyositis or possibly Lupus, given I don’t have any erosive joint damage apart from severe osteoarthritis in my spine and hands. My gut, on the other hand, has been destroyed throughout. I have early stage lung fibrosis but pulmonary arterial hypertension so far narrowly reversed or on hold due to Mycophenolate but it’s progressing slowly. My biggest regret is that my doctors didn’t initially look beyond RA or pick up on fact that I was very hypermobile everywhere.
Hi V. Your daughter's blood results are above the normal range so it's wrong for the doctor to say it's normal and she should have been referred to rheumatology. Not being able to open a bottle is not normal and being in so much pain isn't normal. Not being able to do ordinary everyday things isn't normal..Add to that the family history of RA and it should have been a no brainer for the GP. Not referring her to rheumatology amounts to negligence in my opinion. Most rheumatologists worth their salt don't rely on blood tests alone to make a diagnosis. They inspect the joints and ask the patient how much pain they are in including ultrasound examination to detect inflammation. I would write a letter to the practice manager asking for an explanation and a second opinion including what I have said above. That doctor is useless and is just fobbing off.
good news and not so good, good news she spoke to GP and he done other blood tests ra factor which was normal so no ra thats good news, but it showed up underactive thyroid (hypothyroidism) so she is going to be put on meds for that and bloods to be repeated in a month and if the same to be referred to someone
so thank you everyone for all your help xx
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