Hi everyone!
I'm Sally. I live in a small village 5 miles outside Hereford on the way to Ross-on-Wye called Little Dewchurch with my hubbie Dave, our 2 girls, Josie (16) & Immie (nearly 15), & our two 'unleaded' Burmese cats Cosmo & Oddie

I developed a sudden onset flitting arthralgia which lasted over about 2 weeks about 7 years ago, which settled then came back more slowly after 6 months. I'm a medical doctor, working then in Community Paediatrics (with a lot of commuting, further driving during work & carting stuff about), & I never seem to have straight-forward medical problems, & it took a long time for me to get a diagnosis. My GP (who is great, & weirdly was in the year below me at Med School in Cardiff!) referred me to Rheumatology who tried a steroid depot then put me on sulfasalazine. After about 4 years of beeing seen rarely, incl 2 yrs of telephone consultations, & getting fed up, I was referred to the other Consultant at Hereford for an ultrasound of my joints. (At this stage I did rather feel he thought I was puttiing it on)

By then I had tried switching back to General Practice, to see if less communting would help, but found the work so much more intensive than it had been, in a much more profit-driven practice, and found it very difficult to keep up to the rate at which they wanted me to work. It didn't help that I ws the first part-time Registrar they had ever had, and the 2 part-time female GPs also had a hard time (one, my trainer, left partway through to go to another practice). Perhaps it would have been esasier if I had a diagnosis then,as they might have understood....? Anyway, I struggled to the end of the post, and was signed off sick shortly after (when I couldn't use my extra health insuranceas I had no job!) with depression, which my Consultant Psychiatrist thinks was secondary to the undiagnosed RA. (Fortunately after medication that has resolved - now I just get pissed off with my RA rather than weepy! I've been off antidepressants for quire some time now, having needed a change to a stronger type & a fairly high dose but would recommend them if anyone is offered them by a professional they trust as you can't really see how far you've slipped down until you are on they way back)

The USS was a revelation as I could clearly see the areas of inflammation glowing, literally, on the scan & more importantly see & hear the reaction of the other Consultant who muttered something about 'if you were my pateint I'd start.....' but then pointed out that I wasn't but he'd write to mine confirming the diagnosis of RA. After further delay I started methotrexate, then spent about a year or so working my way up to 20mg orally, then switching to self-injected (at least my medical training & all the 1000s of baby jabs I've given gets to come in handy...). I then had hydroxychloroquine added & finally passed the magic thresh-hold to start on Humira in April 2009. It worked a bit a first, then tailed off after 6 months, and I'm now fed up again. 15 months later I no longer meet the criteria to continue, and after offering Rituximab to me in clinic as a possibility (gave me depo-medrone as my CRP was 45 to come back in 7 wks to see the Nurse Specialist), he seems to have had second thoughts after perusing my notes & remembering I'm sero-neg both for Rh Factor & antiCCP (or was whenever I last had it checked, anyway). The Nurse Specialist started discussing leflunomide when I saw her but couldn't then discuss with the Consultant as he went off with an ankle injury, then on holiday! Am awaiting their thoughts....

My reading of the latest NICE info is that Rituximab is the best next step if antiTNF fail even if sero-neg. Any thought from you all? I'd only seen the Consultant himself because the physio suggested i might benefit from injection to a large nodule I've developed at the bas of my right index finger ( I was seeing her about my shoulder) but he said no in case it caused my tendon would rupture, which i agree would be a far worse scenario. As I'm only 44, I just want to find a treatment that will at least stop the RA from progressing. Having got much more involved in our church as a Lay Leader of Worship, after helping out in our church Team Office got a part-time (very poorly paid - it is the Church of England, & the local churches all have not enough money!) job there which is at least never dull. I'm now seriously thinking of taking it further, including possibly looking towards ordination, but am afraid I will never get accepted unless my RA is under control (I'd like a paid role, & they're scared of taking on anyone who might retire early - quite understandably)

Sorry to moan on! But would really be grateful for any ideas including mosrt effective tactics (I can think things through before but become a bit of a wuss when I get to Hospital OPD & don't seem to be able to get over how fed up I am) Also would love any ideas to help re the nodule - it has improved recently after my latest steroid injection but I know will flare up again soon, especially if I write or try to play the piano or sew.

Thank you all - I know form other people's posts that you're a great bunch. Just glad to belong to you now

Would especially like to hear from anyone of a similar age locall (ish) to me & from any other awkward doctors in particular!

Sally

Hi Sally,

Welcome to the forum, but sorry you have RA.

You'll find everyone friendly and supportive on here and we all know what you are going through.
I am 60 and have had RA for 9 years, now on humira after trying just about every DMARD and combination of DMARDs!
It's such a shame you had to give up your job but sadly it's very common with RA. I was a nurse and had beenn on a career break to bring up my daughter when I started with it and knew without trying that they wouldn't take me back!
Lots of people do really well on Rituximab, it may be worth a try for you.
We all understand depression very well on here , it seems to go hand in hand with the RA a lot of the time!
Looking forward to getting to know you.

Doreen xx

Hi Sally

A warm welcome to the forum; I'm glad you have found us! Lots of friendly folk, useful experiences to read about and thoughts and ideas from us all who live with RA day in day out. Knowing there is always someone around who knows where you are coming from is wonderful, it can be such a relief to have that company and understanding.

I'm Lyn, married to Mike, we have four offspring (22,17,17,15) all growing up quickly as they do! We live in Thornton Cleveleys on the Fylde Coast of Lancashire. I was diagnosed with sero-negative RA 22 years ago after the birth of my daughter and since then managed to fail on almost every anti inflammatory, every DMARD and one anti-tnf. I have also had several surgical procedures along the way. Currently just come off Methotrexate after ten years due to recurring neutropenia, but still on Enbrel, Naproxen, Prednisolone and accompanying bits!

Sounds as though you have had a very tough time over recent years and understand how you must be feeling fed up with it. It does get you down at times, doesn't it? But, stick with it there is light at the end of the tunnel and invariably a drug that will be right for you. Being sero-negative just makes it that bit harder as the blood test results do not accurately reflect disease pattern (not sure why I'm typing this ... you most certainly already know!). You would be entitled to another anti tnf under recent changes to NICE guidelines. I started on Infliximab which was truly wonderful and gave me back my life but unfortunately after a year or so its efficacy started to decline and I was offered Enbrel. That too has been great and I have been on that for about 8 years. Rituximab is a consideration but I understand that it is not as good in people who are sero negative, something to do with the way it works I think.

As regards the nodule it might be possible to do a joint injection by ultrasound thus avoiding the possibility of tendon damage. I've had several hand injections and one of those was done under ultrasound and local anaesthetic (so I didn't shoot through the roof!!). It worked really well, until the joint subluxated and had to be removed. But heyho worth a try!!

All the best for your career change; sounds like a wonderful opportunity to do something different. Let's hope you are quickly sorted with treatment that works

Keep posting. Look forward to getting to know you better,

Lyn x

Hi Sally, welcome from me too, Barbara married to Roy, diagnosed last July 2009. You sound like you have been through alot, with no decisive treatment. There are many people here with lots of knowledge and who can give you lots of information. Good luck x

Welcome Sally and welcome to the forum.

I am Rose from Somerset and aged 56. Diagnosed 2008 and still trying to get on the
correct treatment. Yes I also get depressed and frustrated with this dreaded
RA.

You sound you are keen on a career and good luck on this, lets hope the RA
sorts itself efficiently.

Rose

Sally........we are all mad on here (some more than others, mentioning no names ).
You will fit in well.

Doreen xx

Hi Sally

A warm welcome to our community, I am glad you are here, as you already know you will have much support and understanding.

I am sorry to hear you had to give up your medical career, and hope that you can proceed with your new profession in the near future.

I am 54 and have had RA for about 16 months, due to minor lung issue went straight on leflunmide, but not doing its job so being referred for infliximab. It certainly does seem trial and error to get the medication right, and it does take its toll on life during this period, which is so understandable.

Look forward to hearing from you, please keep us updated.

Julia x

Hi Sally,

Albeit late, a big warm welcome to the forum. I'm 50, married to Chris, with our 23 year-old daughter living at home, and have 2 delightful young cats; I'm also sero-negative, but was lucky as I was diagnosed early. Sounds like you've had a rough few years and understand how this disease can impact upon one's mood. I've been on an anti depressant (SSRI) since earlier this year when I'd just about had enough. I'm not a doctor, but used to work as an approved mental health professional (social worker) until I was ill health retired earlier this year. I could no longer cope with community work or carryout mental health act assessments, leading to late nights and never knowing when you'll be home, as the situation with finding beds was dire in the trust (London) and also having to wait ages for ambulances, my old body was no longer up for it!

I've not done well on the drugs, and whilst on one of them, Humira, developed a rare side effect called palmoplanter pustulosis, apparently only 1 in 10,000 people are at risk, sadly I was one of them I am now on an Enbrel sabbatical and waiting to be infection free (repeated UTIs) before I attempt to go back on it, my immune system is not up for it at the moment, and also have inflammatory gastro problems.

I have found the support from members here on the forum invaluable, they have helped me through quite a few dark patches, and provided fantastic support and advice; made me laugh a lot too. I'm pleased that you have joined us.

look forward to getting to know you,

love,

Barbara
XXXXXX

Hi all!
Thanks for all your support
Just had a great week in south of Frances with family & friends - a town called Uzes which is lovely & happened to have their annual festival on the week we were there too! Good opportunity to check whether red wine is really good for RA....
Great break, tho first time in warm weather that RA held me back some of the time

Anyway - my Consultant has offered me a choice now between rituximab & leflunomide, so have decided to ask to be put on the waiting list for rituximab tomorrow (think I'll start sometime in Sept hopefully). Can anyone tell me how long I'll be at the hospital for my first dose (assuming all goes to plan)? Are there any rules re getting yourself home after - ie will my hubby need to take time off to collect me, or can I drive myself home? Don't have many buses to our village - plus also someone has to get kids from school....

Thanks all
Sally

Hi Sally,

We were in the South of France at the beginning of April. We had a hire care and did around 2,000 miles, we travelled to lots of villages and coastal places. I loved all of it and will go back again in the future. Think I will stay in Menton the next time, we visited that place after we were in Monaco. Hope you RA is a bit better now. Take care love Lorna x