NRAS
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Is this going to be RA?

My daughter was complaining of pain on both knees over the last few months. Told to rest by gp. Now has spread to both feet, toes, hands, elbows and now jaw. I a worried sick. Been for X-rays now waiting on seeing a rheumatologist. She is only 24 . I think it is RA. Thoughts anyone ?

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It sounds familiar to my experience as an 11 year old, it started in my shoulder then gradually moved to my hips and I couldn't walk then progressed once I as in hospital to everywhere there was a joint. Keep pushing the docs

To investigate it's better that they check it out and hopefully for your daughter iliminate RA! I hope it all goes ok and that she starts to feel better with their help for pain relief firstly . Heat was good for my pain ... Some others it's cold packs from a homeopathic point of view x

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Keep pushing the consultants, it took 3 RA consultants and 2 OA consultants before I finally got the answers to my very complicated conditions. One of those conditions is Fibromyalgia, which is affecting all my major joints, which makes them very sensitive to pressure and also touch. It was as a result of that diagnosis that I did my own research including an OA diagnosis when I was 12 (50 years ago) and for which ALL the records have gone missing. When I completed my research which took 2 hours a day for 14 days I discovered that all my supposedly 8 unrelated diagnoses formed the same series, out of 10, as Enthesitis, which is an auto immune disease and very little research into it has occurred in this country, there are 2, Pediatric only, consultants in this country, hardly any help to a 63 year old man.

So don't get fobbed off with a 5 minute consultation, it takes longer, and also make sure you take a list of all the other problems your daughter has had in the past or currently to that appointment.

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Hi Alib

Mine started in my knees last June and spread like your daughter to multiple joints. Including my jaw as you say your poor daughters is too.

Despite testing negative for Rheumatoid factor I was given the diagnosis of Seronegative Rheumatoid arthritis.

My liver rejected the first two Disease Modifying anti rheumatic drugs and I was badly allergic to the third.

I am now on Hydroxychloroquine and been prescribed Etanercept or Enbrel which is an anti TNF inhibitor and am on the fourth week of injecting this once a week.

Because of the disabling nature of the onset of symptoms I was given high doses of oral steroids which gave me steroid induced Diabetes.

The reason I tell you this is not to scare you though undoubtably you will be out of your mind with worry and concern for your daughter as my Mum was and is.

But it is because you must go onto the NRAS website and read up as much as you can so you can be familiar with things that I have described above.

It is vitally important to gather as much information as possible so the journey you will take with your daughter will not be a completely unknown and unprepared one.

You have come to the right place here at health unlocked. Everyone will give you great advice and you won't feel alone with whatever happens next.

Good luck and please let us know how she gets on x

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Does she have any hypermobility in her joints?

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That was my thought too. If she is 'bendy', then have a look at the information on hypermobility.org/ . Hypermobility Syndrome/Ehlers-Danlos Syndrome has very similar joint symptoms to RA, and is more common in younger people. It is possible to have both (I do) but relatively unusual.

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That's the reason I asked. I was told it was RA and then re-diagnosed with ehlers danlos and possible inflammatory arthritis, and I'm only 21

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It's interesting we both had the same thought, becky... My experience is the other way round: I was diagnosed with HMS/EDS first, then as my joints started to degenerate in my 40s that was changed to HMS + OA, and recently that's changed again to possible HMS + OA + RA, as I am no longer 'bendy' and have synovitis and have started to develop erosions..

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Hi beckywebb. No she is not bendy as had a look at the link you sent. We are going to try a change of diet, gluten free and fruit veg etc to see if that helps with the inflammatory side

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The things I have found most useful, diet-wise, are to drink lots of water (pure water) and to cut all sugar except fresh fruit right down, or ideally out, of my diet. It's tricky because there is 'hidden' sugar in so many things; it basically means no processed foods, and cooking almost everything from scratch - but it does seem to have a noticeable effect on my inflammation.

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Thanks for all your replies. I am reading up on everything at the moment and also just read about a new drug in trials. Rituximab. That looks promising. However, starting a new regime and eliminating certain foods from her diet. She is the one that is instigating this. She is a strong character but is getting her down with all the pain and as an active person was very mobile. It is a waiting game but wil keep you all posted x any thoughts on diet changes ?

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It's good that you say that your daughter is strong character and is pushing to get answers as that is likely to get her the best result. If you take charge of your own health it does make things easier.

There are a huge number of similar and overlapping diseases so it can take time to get to a diagnosis unfortunately. Try to keep at the front of your mind that most of them now have effective treatments, and even if it is something like RA you can live perfectly well and happily with it. And there are also forms like reactive arthritis or palindromic arthritis that can fade away.

This forum can be a bit misrepresentative as the majority of people do well and so don't post here often. So do please try not to worry too much, it seems like whatever is wrong with your daughter has been picked up early which also gives the best results. And please don't get too focused on one treatment or another, this is a variable disease so there is no way of knowing which one will help each person the best. For example, Ritiximab (which is quite common now) may be brilliant for one person and do absolutely nothing for another.

There are a very few people who say that they have cured themselves using diet, but this does seem very rare. The most common experience is I think that improving your diet helps a lot alongside conventional treatment rather than instead of it. I eat very cleanly (ie lots of fish, fruit & veg and little meat & dairy) and feel it has a large part to play in the fact that I have no side effects from the drugs.

It is a worrying time, so I feel for you. But I hope your daughter will get an appointment soon and be able to move forward.

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Helix gives great advice as ever Alib.

It is very early days and a definitive diagnosis can be hard to obtain. So much will depend on your daughters exact symptoms and test results as to what treatment is given.

it is very ' of the moment' in today's diet obsessed society to believe diet is a cure all and I agree there is a place for attention to a healthy intake.

At 24 years old it is very important your daughter isn't eliminating total food groups unless it is under medical supervision especially as she is suffering what appears to be a significant onset of inflammatory arthritis.

If however a focus on diet is helping you both as its something you have control over at this worrying time then I agree with its benefits but please don't take it to extremes.

Good luck, when is her Rheumatology appointment?

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Thank you Helix and Mandalou. It is good to have positive words. Bloods came back as low calcium, inflammation high. Await next steps

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She has now been signed off for 8 weeks. Gp States her hands are bad and still waiting on rheumatology. He said that she will get loads of meds and to come back again in 8 weeks for another line as will need it. Not looking promising at all. However on the bright side, X-rays normal.

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Been at the consultant today and diagnosed with RA. Now the medication begins.

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