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Date: 19.09.2009
From: Nora

Subject: Newly diagnosed RA - what happens next?

Hi Everyone - came accross your forum whilst looking for a few answers, so maybe some of you may be able to guide me.
Firstly my name is Nora. I am 55 years old and have just been diagnosed on 9.9.09. with Rh. Arthritis. I have had lots of wrist pain which started in my left wrist (I'm left-handed). The first specialist I saw thought it was RSI because I am a cook. I could just about cope with working by using a hand brace but then it spread to my right wrist. After the usual blood tests for inflammation got worse by the second lot, I was referred to the Rheum. Waiting for appointments to arrive was terrible and they even tried to cancel my first consultation! If they had had their way, I STILL wouldn't have had that first appointment yet. Anyway, without waffling on too long, I was desperate for some pain relief by the time I had a second appointment. My Husband was having to help me wash and dress by this time. The Rheum. gave me a 40mg injection of Depo-Medrone which didn't help. Eventually on the 9th Sept., I was diagnosed and was put on a regime of:15 days course of steroid - Prednisolone, tapering down from 30mg daily to 20mg over that time. Ranitidine for stomach - 1am and 1pm. Methotrexate 7.5mg first week - rising gradually over 10 weeks. Folic acid 2 days later.
I feel about 85% better and have even driven my car for the first time in about 8 weeks. I can't believe the virtual freedom from pain BUT, WILL IT LAST? or is it just the steriods? I'm up to day 9, am I likely to go back to the pain of before? Has anyone experienced the 'high' of the steroids blocking the immune system, just to go back to the pain when they are finished? Sorry to go on so long. The thought of that pain again is worrying but I need to know.
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Date: 19.09.2009
From: jill

Subject: Re: Newly diagnosed RA - what happens next?

HI Nora...welcome to our forum, best around.....ok steroids do help us become strong again...its a wonder drug often....but must be used short term only....I beleive that the MTX(methtrexate) u r on has helped u enormously, fabulous.... how ever, reality is, there r still better medcs than that.. get on the Enbrel along with Methtrexate.,...dampems down damage to the joints....as u have probably read that R.A. is a degeneerative disease,same as inflamatory arthritis... I have that..... R.A. does travel around the body, that is y its important u get the correct meds....ask for Anti TNF meds.... the best...help stop flares ups so often...and lesss pain....but be realisitic, we r never free from pain all the time, not possilbe..... its incurable, and it cand get worsse...u wanted the truth, apologies if I upset u, not intended.....I wont tell u m,y story(altho i have posted some about my probs) wld horrify u lolol.... but hey, im still here..... Lynne had R.A. but shes having a break at the mo, she is helpful regards R.A. a freind of mine bgan in finger, then wrists, she wasnt told the thruth, now its in her shoulder, knnee and back.....u need to ask your Rhummy to be honest with u...... howeverm NOT everyone gets so bad.... especially if u get the best meds to stop the damage....or at least dampen down the damage....All arthritis is Insidious, painful... tiring.... this forum has all stories, that u can read...so manmy people with it, and so many posts that u cld read...... Please also read the POST abot DLA...benefit u can claim for disabitily ok/..... think Monica sent that in...

please keep coming in.....and if the pain returns, make sure u r on goood painkillers...im on morphine...Zomorph is fab.... then there r pain patches(transtec) then there is Tramodol...not that doood aftter a while.... dont sufffer pain OK

keeep in touch u will learn to understand your body, the right meds, your pain wont be like b4....becos now u r being looked after ok hope that helps x
Jill
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Date: 19.09.2009
From: val h :-)

Subject: Re: Newly diagnosed RA - what happens next?

hi nora welcome others can help u more than me but i do know how bad this can affect u and how frustrating it is take care listen to your body and let us know how u getting on
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Date: 19.09.2009
From: Nora

Subject: Re: Newly diagnosed RA - what happens next?

Thanks Jill for replying so quickly! I suppose I will just have to take it as it comes. It was the steroid that took the pain away for me. Within 1 hour of taking the first dose, I was pruning roses! It put me on a sort of high because I had been so fatigued and in such pain for so long. I only started the Methtxt. last week - have had one dose so far. Side-effects sound scary. I suppose 'suck it and see' applies here. Nora.
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Date: 19.09.2009
From: Nora

Subject: Re: Newly diagnosed RA - what happens next?

Thanks Val. It's good to know I can talk to people who know what it's like. It's ealy days for me and I am not sure if I am going to get back to work. I have already put in a claim for that DLA. I rang them after getting home from the hospital! Why wait I thought and they sent me a claim form. If my wrists get a bit easier, I might get back to work on lighter duties. My hands shake a lot now though - does anyone else get this?
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Date: 19.09.2009
From: jill

Subject: Re: Newly diagnosed RA - what happens next?

Hi Nora, u sound like a strong lady...keep that positivity up...u r so right about those steroids, but over a period of time, in my personal case, they dont work as goood, so fast, on occasions they havnt worked at all...even the injection ones, altho that has been rare...most of the time they do work....pred is amazing, but be careful taking it...we r all different Nora, your side affects mite not be same as mine and so on..... if u feel nauseaus using MTX,,,eat ginger nuts...crackers anything to saok up the sicky feeling.... I take mine at night, hels better, than using it first thing in morning......u will learn as u go along...but like I said b4, u willl in time control the pain well.....but the fatigue is somat else... if your tied, rest....listen to your body....anyway goood luck and stay with us in the forum...helps everyone ok

take care Jill
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Date: 19.09.2009
From: val h :-)

Subject: Re: Newly diagnosed RA - what happens next?

hi yes my hands do shake and i drop things all the time. we did a bit on it a while ago as also drag my right foot a bit when have over done it then fall over lol
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Date: 24.09.2009
From: Nora

Subject: Re: Newly diagnosed RA - what happens next?

Hi again All. Tomorrow is my last day of steroid 'bridge therapy'. From what I am reading here it sounds as if I am in for the return of pain! I've been busy doing things like cutting my toe nails and cleaning (a bit) round the house lol! prob won't be able to manage soon.
Did anyone get chest pains on steroids? I got a horrible one that lasted 7 mins. yesterday.
I do realise how lucky I am at the mo. reading everyone elses experience.
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Date: 25.09.2009
From: jill

Subject: Re: Newly diagnosed RA - what happens next?

Nora sorry I havnt.....but maybe u have inflamed chest musckles? like costrocondritis....do a test... in betwewem our chest, feel for your ribs... in between the ribs is sift tissue....press inbetween there....if its tender it mite be that....also if u turn your head left and right, does it tug on those bit ive mentioned if they r tender?? just a thort... have it checked out anyway...take care
jill x
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Date: 25.09.2009
From: Nora

Subject: Re: Newly diagnosed RA - what happens next?

Thanks Jill - I'll see the doc on Mon if it comes back. Haven't had one today. Bit tender where you say to check so will keep an eye on it.
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Date: 30.09.2009
From: jill

Subject: Re: Newly diagnosed RA - what happens next?

Hi Nora, hows things? still the same? did u see the GP? hope ya well x
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Date: 01.10.2009
From: Nora

Subject: Re: Newly diagnosed RA - what happens next?

Hi Jill - I have just posted on 'we need new supporters' post (I think that's what it's called) Think I might have withdrawal symptoms from steroids. Hope it goes soon as it makes me feel a bit crap at times. Only good thing is that I may lose some weight lol! GP doesn't know a great lot about RA - she told me I didn't have RA because my RF is negative, but we know thats not always the case don't we?
Anyhow I hope you're ok. X Nora
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Date: 01.10.2009
From: Janet

Subject: Re: Newly diagnosed RA - what happens next?

Hi Nora I was diagnosed with RA the day before you and am also RF negative. I hope you continue to feel well after your steroids. I am on week 3 of sulphasalazine and apart from the nausea, dizziness and fatigue I am managing generally well, except I feel like I have a cold coming on at the mo. I must say though I can usually eat for England and it is strange I have no appetite, not even bothered about eating and I normally eat well even if I am unwell lol. I am hoping to loose weight as well.
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Date: 01.10.2009
From: Nora

Subject: Re: Newly diagnosed RA - what happens next?

Hi Janet - Yea, I feel a bit fluish but I did have the flu vac. in Mon. so that might be why. I'm glad you're managing - I can normally eat well too and if I lose my appetite, I just know something isn't right lol! I've had a headache on and off since Sat. so that's a bit unsettling. but compared to how I was at diagnosis, I'm a picture of health! Those steroids worked really quick and so far, I haven't had anything like the pain I was in. How about you Janet? Have your meds. reduced your pain?
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Date: 01.10.2009
From: jill

Subject: Re: Newly diagnosed RA - what happens next?

Nora that is fab news, its info like that, that give others so much help...so welll done for staying positive....steroids r an amazing med, but remember, they dont like us to have them....I have injections, but they dont like to give them 4 months apart I think.....anyway....keeeep well, wrap us warm....U 2 Janet xx
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