Hi Maggie

Welcome to the forum, sorry about the RA though.

Feel free to ask any questions on here, there is a wealth of experience from starting drugs, what the drugs do, finding the right drugs, remission, emotions etc etc etc.

I was diagnosed in 2008 and am currently in clinical remission so am one of the lucky ones that have found the right drugs and only have mild, fluctuating symptoms and flare ups (it can be achieved).

I hope you have a similar journey, a lot depends on your GP, Consultant and Rheumy nurses.

Look forward to seeing your posts and comments.

Angie

Hi Maggie and welcome

It's a shame that it can sometimes take a long time to find the correct treatment and for it to become effective. I was diagnosed in 2000 and tried several routes before getting a good balance of treatment that works for me.
Hopefully you will get some appropriate medication sorted out soon so that you can get your life back on track. RA is a tough cookie to come to terms with and that does take time too There are lots of people here more than willing to support you and there is a wealth of knowledge to be found so don't be afraid to ask anything!!

Julie x

Thank you all for the welcome! I am positive about managing this wretched disease but I can't do it on my own!. I'll tell you my story so far..I first saw the Rheumatologist in Aug 2013 - started on MTX 10mg (not a big dose I know). She said I needed an ultrasound on my joints - this was to be done by one of the other Rheumatologists. My appointment for the ultrasound was scheduled for about 3 weeks after my initial consultation - it was cancelled. I finally had the ultrasound about 6 weeks after my initial appointment, so I had been on the MTX for that time. The ultrasound didn't show any inflammation and the Rheumatologist doing the ultrasound suggested stopping the MTX, he said that if I had been on it longterm no one would play around with it but seen as I was in the early stages I could stop it and see what happens. He said he would speak to my Rheumatologist and explain it to her.
By the end of October I was in agony with my feet. I rang my Rheumatologists' secretary ( at my initial appointment I was given no contact details for a CNS, just a booklet about MTX and RA and that was it!!) and asked her what I should do. I was given an appointment to see the Rheumatologist for the next day, she looked in my notes and said I shouldn't have stopped the MTX...I told her I only stopped it because the her colleague told me to! Anyway I had 2 steroid injections and felt like a new woman a matter of days!! However as a result of this my appointment with the CNS for Nov was cancelled and re-scheduled for February. I knew by the date I was given In Feb that I would not have had a recent blood test for this appointment, I contacted the secretary - no reply.
Well February came and again I was in agony, I couldn't move at all...I visited my GP about 3 days before my CNS appointment, he said he would do a blood test so at least that would be there for the CNS to see rather than results from the beginning of December. Even though I was in pain I was looking forward to seeing the CNS, I prepared a diary of the previous 2 weeks so she could see how I was affected. I had my blood test results from the GP and my CRP was 4 times what it had been at the beg. of Dec.
My CNS was looking at blood results from Dec, wasn't interested in my diary - she examined me and said I was in the middle of a flare and perhaps my MTX shold be increased - she left the room to see the Rheumatologist, came back and said we will keep you on existing dose but prescribe injections! At this point I knew she hadn't taken on board what I had said about my bloods - the penny dropped finally and she trotted off again to see the consultant who by this time was with another patient so the CNS left it as it was and sent me on my merry way with a prescription for MTX injections at the same dose and an appointment with the consultant for June!
That was 3 weeks ago and the steroid injections have not had the same effect as the first time. My hands are now all bent up in the morning, some of my fingers won't straighten all day. I phoned the CNS and she said she will increase the MTX dose and send the prescription to my GP , no mention of monitoring or how much she is increasing it by or anything! She talked over me when I was trying toexplain how bad my hands are..no grip etc!

I have spent almost 20 years working for the NHS in a hospital pharmacy and I am just exasperated at this stage - my manager (a very senior pharmacist) has no concept of the condition and it's treatment and I feel I am being left as far as my treatment is concerned.

Sorry if this is boring to read but I feel sort of helpless. I am seeing my GP next week and see what he has to say and if there is anything he can do. My sister works in one of the big London teaching hospitals' and has arranged for the CNS from there to give a call.

Maggie

Hi Maggie

I echo what Anne said in terms of contact points and 'start of journey'

3 key contacts are your GP, Rheumy Nurse and Consultant's secretary. Your GP will be you first port of call for any new services you need and also as you primary care giver who will keep an overview of all your treatments.

Your rheumy nurse can be a great contact and is far more readily accessible than your consultant. The experience you had where she went off to talk to a consultant is very typical of what can happen, although it looks as though in this case you weren't happy With the outcome. Don't be put off by this experience because a rheumy nurse with immediate access to a consultant will always be faster than getting an appointment with the actual consultant.

The consultant's secretary will expedite communication and appointments with the consultant.

If you have bad experiences at a hospital you are entitled to ask for referral to another by the way, so if you are really fed up with how you have been treated that is something you can discuss with your GP

Welcome Maggie,

You've certainly come to the right place, you'll gets lots of support, good sound knowledge from those who have been there, done it and got the t-shirt!

I was diagnosed 18 months ago and if it helps, I'm not yet 'sorted'. There'll be good days and bad, then there'll be not so bad days.
You'll find that those people you know or meet will all have advice to give you but they'll be grouping together OA and RA. Few lay people really understand
what a debilitating disease rheumatoid really is.

If it helps you, learn all you can about the disease but leave well alone if that's not your style. As the months go on you will begin to understand more and more.
Keep posting on here - and ask, everyone one this forum will help you.

Gogs

Hi Maggie

Welcome to the forum - you sound like you are having a rough time and being passed round the houses and not knowing what is going to happen next.

I was diagnosed about a year ago - I am 41 and have 2 boys of 8 and 10.

It is a rollercoaster and I have had to dig deep mentally to come to terms with it but find coming on here is a godsend.

Irish - great stuff. My dad is from Northern Ireland and has lived here in Dumfries for all of 50 odd years but he's never lost his accent.

Take care and speak soon.

Lisa xx

Hi everybody - once again thank you all for the comments. My latest is that my 2nd and little finger on my right hand do not straighten until about 4pm each day. Thankfully I have managed to get my CNS to see me next Tuesday - she has mentioned injecting them and getting a splint! I am amazed at how much I can do left handed!! My son (aged 7) is trying his best to do some physio on them! I must say today is the first day in a long time that I actually feel good...I feel like me if that makes sense..maybe it's the sunshine.



Maggie

hi Maggie,

i had a little finger that was curled round every morning and was painful for me to straighten it .. and when i did it clicked with each movement,

was referred to the hospital ( this was pre RA days ) and it turned out to be trigger finger, i was given a steroid injection in it and it righted itself straight away and has been fine ever since, i'm just aware sometime's that it sticks for a few seconds.

Suzanne