HelloI've had a fairly rapid o set of symptoms over the last weeks - sore wrist, then swollen wrist and elbow. Then the other arm ... GP is sending for blood tests and in a panic I've also booked an appointment privately. My mum has RA (though has been in remission best part of 20 years which seems pretty amazing from my googling). Pretty convinced I have it too.
I know noone can diagnose but I wondered if anyone had any words of reassurance etc about what's in store. Feeling very desolate and not good at keeping myself off Google!
All the best to everyone x
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hatts79
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I was diagnosed last year. You have done well to get an appointment swiftly as I found much of the delay was around diagnosis and appointments. I did have a private appointment but be warned that for some reason they have to go through the NHS to get you started on DMARDs. Fortunately, that didn't take as long for me as some of the horror stories. Hopefully your GP has asked for anti-CCP and anti-RF as a well as CRP levels. For me the raised CRP and anti-CCP ensured fairly quick action. Then for the next year it has seemed an almost intolerable wait to see whether Methotrexate would work...it does take a long time. I have been lucky to not have side effects so was able to up the dose and add sulphazalasine. In the meantime I was given short courses of prednisolone (probably best to wait until after diagnosis so they don't mask the cause) which gave me boosts with periods of normality. Now I'd say I'm about 70% better which is a vast improvement from being disabled to the point of almost bed bound with a lot of pain. Throughout I feel that I have had good care and I've let the consultant and nurses guide my therapy. When I felt that I could manage it, I also asked for physiotherapy, which I found very helpful. I'm not sure that I'd have been offered it if I didn't ask. I hope that this is coming across positive. You will likely go through a period of thinking nothing is going to help but stay optimisitic, it often takes longer than the literature suggests so don't give up on a therapy too early. There are a lot of options available if you don't tolerate some of the drugs offered.
Good answer GR…..cut to the chase. You listened to your doctors, persevered with your meds & accepted you needed help,& you understand that RA symptoms are not despatched overnight.
Hope you continue to improve & keep optimism at the top of your To Do list.
It's a worry to have to deal with a possible new illness. And Google doesn't always help! RA is quite common and many many people live with it. Look at your Mum! You could end up being like her? Same genes. The sooner you get diagnosed and treatment the better.
The early days can be brutal. And when I say days, I really mean months. Hang on in there as things will improve and when the tests come back, the docs will have a better idea of how to treat it and with what.
In the meantime, compression gloves may help your wrist and alleviate that burning sensation.
Thank you too. I've never been very good at uncertainty and this really does challenge on that front doesn't it! I thought it was pins and needles but burning also describes it. Good tip on gloves x
It is a challenge definitely. I remember sitting on the bed weeping as I couldn't do up the zip or buttons on my trousers. Gave myself a talking to and found yoga pants instead. I can do all buttons and stuff up now. The gloves are great. My friend bought me some from Dr Arthritis. I've not needed them for 6 years now, but they did dull that burn.
In 2016, I went on holiday to Portugal. One month later I was wheeled off the plane in a wheelchair. It was pretty dramatic 😅. And pretty scary too.
How you're feeling is completely normal. I promise 🙂
That must have been scary, my cousin had similar. It does seem to like drama this thing! (And families!) I seem to get a new symptom every day - just adds to the fear. But all these replies have really helped
Like you, I had very rapid and dramatic onset of symptoms ( including all the joints of one hand blew up very painfully and I could barely move them...not good for a working musician)
Which led to me being seen quickly by a great local nurse practitioner and then within a month by a rheumy consultant.
Who quickly ultrasounds my joints, diagnosed sero neg RA, and started me on steroids short term to calm things down and methotrexate to take over when it kicked in. He said 'we hit it hard right now'.
Within weeks I started to have back the use of my hands, and my RA has been under control....this was in 2019. I've been well monitored since, the steroids are a distant memory, and I remain on 20mg methotrexate weekly.
Thanks greynot, this has cheered me. That must have been very worrying as a musician, I have a violinist friend who had a hand problem and I remember the worry she was in too. Thank you again x
Hello hatts, I think the vast majority of people diagnosed now have a very good chance of getting to remission in a relatively short period after treatment starts.
My advice to you is to learn as much as you can about living with RA, BUT NOT FROM DR GOOGLE! look at the NRAS and versus Arthritis websites. NRAS have literature and interactive videos about practically any aspect of living with RA. They also have a very good help line. Give them a call to get you started maybe. They can point you in the right direction.
I live with RA since 2009 and am in remission since 2014. I have different life now and I would say a better one. I got stronger mentally and physically.
Thanks stbernard, also cheered me up. I would tell anyone else not too Google in the same situation but seem to never follow my own advice! The GP said rheumatology act quite fast but I don't know that means these days!
Whatever happens, stay positive. You are a lot stronger than you think you are. I and many many people have found that during our treatments.There will be good times and bad, that's the norm. You'll get through this!
Note my diagnosis is Stills Disease which for me manifests as RD, diagnosed aged 17 in 1979, med free by my mid 20s except pain relief and wrist splints. 61 now and although the illness changed the course of my life I had a successful career, drove, exercised and had two sons. You’ll soon find a way to live with it, we all do. Wishing you good days.
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