Newly diagnosed : Hello everyone I have recently been... - NRAS

NRAS
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Newly diagnosed

Hello everyone

I have recently been diagnosed with RA. High RF but other bloods normal. No morning pain or swelling. Pain in hips shoulders elbows hands feet ankles. Is it inevitable that I will have the overnight plunge into fill blown RA that everyone describes. Still finding it hard to believe I really have it.

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Hi. I have been diagnosed for 2 years. From the site you will see everybody seems to have their own experiences so dont assume the worst

I was treated very agrressively at the start to get under control. I still have flares for 2 to 3 to days about every 2 weeks. These manifest as swelling in the hands intense burning sensation aswell and some knee weakness. Also numb hand's at night. But nothing so extreme as to keep me from my daily routine. My biggest discomfort is daily hand pain from my hour long drive to and from work. I count my self lucky that I have been the recipient of new regimes which avoid disability. Try to stay positive.

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Thank you for your advice. I appreciate your support .

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Nope not inevitable at all, sorry you have joined us, many remain stable with few symptoms for years. Unfortunately not me, i had the "fall off a cliff" type of arthritis but its the luck of the drawer (or not), started with a chest infection and BOOM. Most people are fortunately way down the scale from that and i hope you are one of those.

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Thank you. Sorry that you had that happen. That's really tough.

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Thats kind of you, im 5 years further down the line than you, there is always lots of advice on here so keep posting and keep asking you will always get answers and loads of support, they are lovely people and we all know what your going through which with the best will in the world friends family etc probably dont and cant. The forum will be the best support you can find anywhere. Good luck

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I was told in December last year that what I'd been suffering from was Palindromic Rheumatism. In January, after he'd seen my blood tests that was changed to "early non-erosive RA". This was based on RF and anti-CCP only, all other tests were normal and I had no symptoms - other than tendonitis in my shoulder. I get widespread aches, but no morning stiffness or swelling (apart from occasional palindromic stuff which is very transient).

From the beginning of the year, I have been expecting a sudden disabling decline, but it hasn't happened. The worst things for me are tendon problems and side effects from the drugs (Ibuprofen - chest issues, and Hydroxychloroquin and Sulphasalazine - appetite changes, weight loss and now throwing up).

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Well it sounds bad enough, sorry. It,'s a scary thought that it could just hit me but I'm saying positive. I opted to stay off the med until I get any swelling. I'm taking Naproxin to ease the pain.

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It is bad enough, but I have to count my blessings as it is nowhere near as bad as some people are suffering! I was encouraged to start medication before symptoms became troublesome or I would have left it too. The decision was mine, but the consultant said the sooner I started with DMARDs, the less chance there was of permanent joint damage and disability.

Every time I go, he offers me general steroid shots to "tide me over", which leaves me worrying that he knows something awful is imminent. One appointment, when I declined his shot, he even offered me oral steroids which scared me even more. So I identify with the fear you live with.

Have you looked into things like anti-inflammatory diets, supplements etc? They can make a big difference.

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OK I will look into the diets and supplements . Am willing to try anything that helps.

I'm having a scan on my shoulders next week and a review with my rheumy the next day. I will talk through starting the med.

He has diagnosed probable seropositive RA even though my anti ccp was normal. Like you I'm wondering why he seems to be expecting the worst.

Armed with all this new info I will be asking g a lot more questions .

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Mine was gradual onset too. Random bad pains in shoulders and occasional flu-type aching . After a few months i went to the GP and blood tests showed high inflammatory factors and anaemia. This was when I was referred to a rheumatologist, however by then i had it badly in my knees and could hardly walk! It's under control with Salazopyrin and methotrexate now and I'm fine.

I know you're probably reeling from the diagnosis and that's understandable. Don't be afraid of going on medication, It's essential for keeping it under control.

Sorry you've had to join our club but, not everyone has the sudden onset type. We're all here for support!

Ally x

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Thank you Ally. You all sound so brave.

I will be sensible about starting treatment. I'm aware that it will probably be for life so will hang on until I get any swelling.

Your responses have been very welcome e and comforting . Thank you x

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Glad we could help. For me, the thought of going on meds was more upsetting than the diagnosis! However, the earliest you can get stabilised on medication the better you'll be in the longer term. It slows, even stops, disease progression so we can still lead healthy lives.

I don't have time to be ill - I work fulltime, have a busy family life, look after my mother, go to the gym and help out at my church! Luckily mine was diagnosed early too before it got too much of a hold. Wishing you all the best.

Ally x

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Hallo Toadall. Welcome to the site. Sorry to hear you have RA. I have OA but not too badly most of the time. You will find a lot of sympathy and help on this site. Keep going and best wishes.

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Thank you . Already feel a lot better.

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Hi there, I have exactly the same situation - high RF in bloods, but other tests normal. Occasional swelling of the hands, and stiffness in hips and shoulders, but have been told that hip pain is osteoarthritis, as is shoulder pain, as I have had some bone spurs removed. I am waiting for an appointment with a consultant as I too cannot seem to get my head around the fact that I have RA. I feel very alone and frightened about the future, particularly as I have no family.

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Thank you for your reply . I'm sorry that you feel so scared. I hope you get some answers and reassurance from your consultant . Let me know how you get on 😊

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Hello, please don't worry about the inevitable plunge into RA. You are one step ahead of the disease as you have been diagnosed before "full blown RA". The meds you have been prescribed will prevent this.

All the best too you

Sue

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Thank you Sue. I certainly hope so 😊

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Hi Mine started over 20 years ago and has crept slowly. In my experience everyone's RA seems to be different. These days with the advent of aggressive early treatment the outcomes are much improved. Good luck

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