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Date: 23.04.2010
From: Anna

Subject: RA progression?

Hi everyone, I'm new to the forum and to arthritis. Just been diagnosed with sero-negative RA at the age of 24 :(. I've had symptoms for about 5 months and I'm just about to start a DMARD. I've read a lot of scary things online, but so far my symptoms, although VERY unpleasant at times, have been quite mild compared to what I've read about. I had finger swelling the first month, then a relative 'remission' for 3 months with just some all over aches, mostly in my feet, and hardly any swelling, and the past 3 weeks I've been having a flare up in my fingers, they're pretty swollen again. It's making me feel miserable after the long 'break' but I'm hoping it will calm down again soon, or that the DMARD will help. I guess my question is - did any of you start off with milder symptoms and how long before the disease progressed and became very painful/disabling? I know everyone is different but it would be interesting to hear people's experiences. Thanks!
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Date: 23.04.2010
From: maz

Subject: Re: RA progression?

Hi Anna and welcome, i started off with mild shoulder pain and was given soluble aspirin by my gp, two weeks later i went back and was referred for a blood test which showed RA, i was 27 at the time, i managed to keep working until i was 32 when the RA really became bad, im in a flare at the moment so can emphasise with you, i do hope the treatment helps, ive just started on humira and have heard it is good.
Here's hoping your joints settle for you soon.
big hugs, maz.
xx
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Date: 24.04.2010
From: Anna

Subject: Re: RA progression?

Thank you for the reply Maz. Sorry to hear your RA has got bad and hope the Humira helps. Can I ask what meds you were on the 5 years you still worked and how much did they help?
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Date: 24.04.2010
From: KayJay

Subject: Re: RA progression?

I'm an oldie compared to you young lasses but I have / are experiencing pain in my fingers and they seem to be getting fatter by the day. My wrist is also starting to hurt as well. It comes and goes but never seems to get better. I was put on Plaquenil beginning of March and they told me it takes a few months to kick in. Anna have they done a scan on your fingers yet ? mine shown synovitis so I suppose that why I get the pain.
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Date: 24.04.2010
From: Anna

Subject: Re: RA progression?

Hi KayJay - I feel like an 'oldie' some days so I guess age doesn't matter with RA!! Sorry about the fingers, it's awful when you can't do anything with your hands.
I had an xray which was normal and I am getting an ultrasound soon. You dont need an ultrasound to see my swelling this week though - the ends of my right hand fingers look like little party sausages. They're not painful unless I press on the swollen flesh hard. It is pretty restrictive though, thankfully my right pointer finger is ok at the moment so I can type with it. I hate this!!!
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Date: 24.04.2010
From: KayJay

Subject: Re: RA progression?

I have 2 daughters age 26 + 29 so I can only imagine how you cope. Yes I know Anna I do feel so sorry for the younger people who get this. And I'm 56 but feel like 80 !! I didn't realise how much mine were swollen it was the scan guy who mentioned it . Hopefully they will be able to get you some meds which will slow it down. I shall keep my [ sausage ] fingers crossed for you ;0)X
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Date: 24.04.2010
From: minnie

Subject: Re: RA progression?

Hi Anna, I have sero-negative RA , just found out a few months ago, when I switch Rhummy, Adleast you found out in time.. Most people with this condtion can go on for years with out turning into RA, Like you said its all depends on each one of us. Right now I have a swollen elbow, and finger which is calming down, but my left knee is really swollen,. i can not take the meds the doctor have tried several kinds, and my body reacts to them.. they think its because I was born with one kidney, lucky me .. wrong.. I have to call the Rummy nurse again, and see if they can drain it and give me another steriod shot, even tho the one one did not last more then 6 weeks.. I wish you all the luck, and we all are here for you..
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Date: 24.04.2010
From: maz

Subject: Re: RA progression?

lol kayjay, im an oldie, 58, Anna i was on a drug called levius, then penicillamine, but they are old hat now, that was about 30 years ago.
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Date: 24.04.2010
From: Paul

Subject: Re: RA progression?

i got sero-negative RA at 33 and started on Sufalzaline and lots of steriod injections which after a year failed to work, 3 years later turned in sero-positive and i went downhill big time and had 1.5 years of work (luckily i had insurance).
Changed hospital and moved on to MTX, worked great after a year for it had to kick in. Then decided we should have a kiddie, came off the MTX for a year and during that time my joints started to deform in my wrists, hands and feet. My jaw has tmj and my lower neck spine is painfull. Anyway, no kiddies after 3 years so we go down the ivf route and have my sperm frozen so i can get back on to MTX again.... over 6 months now and 20mg a week is not working, so last Tuesday i went back on to Sulfazaline along with the mtx.. 4 hours later i was being sick and felt like i could faint.. clearly my body could not take the 2 medications and had an overdose. 3 days later i was still sick but still managed to work (scared to lose my job), called my Rheummy who told me to stop taking the sulfa straight away ( i did anyway).
I'm hoping to go on to anti-tnf drugs and we are looking at this in the near future.

What i would say is that its crap having RA but new medications are out there and really good, its just very hard to get on them due to the expense to the NHS.
Try not let the RA take over your life and try and enjoy life as normal, i still do silly things when i shouldn't like recently taking up kite-surfing and cycling 130 miles in 9 hours or running over mountains for 18 miles etc

Also before your start on the really strong medication think about when you'd like to have children (thats if you do) and plan for it, i had to come of MTX for a whole year before trying and as i mentioned before nothing happened until i attended a ivf clinic after almost 4 years.

But most of all don't let RA beat you and fight for the best medication and if the hospital you attend are rubbish go elsewhere, you have rights now in the NHS :-)

Regards

Paul
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Date: 24.04.2010
From: Anna

Subject: Re: RA progression?

Wow Maz, you're a proper veteran!
Minnie, sorry to hear you can't take meds, what rotten luck!! Not even the anti-tnf?? Or is it too soon to try those?
Paul, that's interesting you mention kids. I'm young now and never gave it any thought but since all this happened it's been on my mind. To be honest I wouldn't mind adopting if my RA was under control.. you're very brave to take the risk and come off meds.
My hospital are really good and my consultant is very kind. She really listened and spent ages with me so I'm happy there.
I'm trying to be 'normal'.. when this first started 5 months ago I was a wreck, thinking awful things. But 5 months on, no meds, I'm still ok, so I'm hoping the meds will give me some improvement and with some luck I can still have a few good years. Is maybe getting to 40 without being disabled too much to hope for?lol UGH.
well, thank you all for the replies and I hope you're having a good weekend!
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Date: 25.04.2010
From: Jill

Subject: Re: RA progression?

Welcome Anna, rotten news to hear that u have this so young, mine was aftet my first born, i was 26, so know the feeling, but im 49 now, and for many years, coped, but hit my 40s(and remember altho we look older, mentally we feel 24) hit my 40s and have beeen terrible, really attacked me. all joints, and tendons, ligaments, and Soft tissues within the body, so Please, see rhummy often and if U know things r getting a little worse, even if a digit on yo finger that suddenly hurts, or an elbow, means that things might be progressing! so that needs to be stopped via the Dmards or the Anti TNF! And Paul has a very important message to send, the meds affect fertitily....... even tho u may not be thinking about babies yet, its worth looking into that, and its a wonderful idea that u wld consider adopting, what a lovely lady u r ...tc Jill x
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