Hello all

I have just joined the NRAS - after having RA for 43 years! I was diagnosed in 1967 at the age of 32. It all started in my right knee after my daughter was born in 1960, and gave intermittent trouble until a severe flare up in 1967 when it was finally diagnosed. Apart from steroids, the only treatment offered was Gold and aspirins. The gold didn't work at this time, and my GP transferred me to a the rheumatology dept of the Middlesex/UCH London. After three weeks as an in-patient on bed rest and a new course of gold injections, I started to improve. Since that time I have run the gamut of all the medications then available. I am now taking methotrexate 10mg weekly (since 1998) plus Folic Acid, and have been transferred to a local hospital. I feel better now than I have ever felt; I've got used to pacing myself, but it was not easy when I was younger. I can understand the frustration of newly diagnosed young women (and it does seem to affect women more).

I have been browsing the Forum and am fascinated by the experience of all the contributors. There is so much choice of treatment nowadays and the outlook does seem brighter than 40 years ago. My main problem is with my hands - they are badly deformed (at least, the right one is). I had MCP replacements on the left hand in 1994. I understand from doctors that these deformities can be mainly avoided now with aggressive treatment at the outset - provided, that is, it is tolerated. But I'm free of inflammation and the pain is minimal - the first years were certainly the worst.

In spite of all the problems, you all sound very cheerful and positive. I shall continue to read the Forum and keep up-to-date on new research and "breakthroughs".

Good luck and keep smiling!!

Marian-T

Welcome Marian,

Welcome to the NRAS forum but ssorry you have had RA for so long.

You will enjoy the Forum I joined nearly a year ago and have found it great for all diff
reasons .

I am Rose aged 56 from Somerset. Diagnosed late 2008 and have been on DMARDS
TMX, hydro, sulhp,leflun , depo injects and prednisoline now. Waiting to start Humira
after an infection disappears.

Good wishes

Rose

Hi Marian

Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you finally found us after 43 years! 43 years?!! I was beginning to think there was only Jenni, myself and Ailsa Bosworth (NRAS, CEO and founder) with anything like long term disease!! You have won the prize , although I don't suppose it's one you really want!

I'm Lyn, married to Mike, we have four children, Abby 23, Ian and Jake 17, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA nearly 23 years ago (like you, after the birth of my daughter) and have since run the gamut of medication and had several (now I've counted up it should read many!!) surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, and a jolly assortment of pain killers! Struggling at the moment after knee surgery last summer, a major flare in Cyprus of all places, two lots of knee aspirations and joint injections in 7 weeks and a further referral to Orthopaedics. But heyho...

Great to hear that you feel so well and the disease is currently controlled. Long may it continue

Look forward to getting to know you. Do keep posting,

Lyn x

hello marian
welcome to the forum.
I'm Eve, 58, I live in aberdeen and have one daughter who is at university in holland. I was diagnosed last july and am now on methotrexate, one of the caught early - treated aggressively patients you mention.
this is an amazing forum where the warmth and friendship is evident to someone newly logging in. whilst I don't have the long term experience of the disease to get involved in all discussions, as anne says your experience and knowledge of the disease will be invaluable.
.....eve x

Hello Marian

A warm welcome to the forum, really pleased you have found us at last.

Really pleased that the mtx is working so well for you now, long may it continue for you.

Best wishes Julia x

Hi everyone

Thank you all very much for your warm welcome. I do feel a bit like the Granny of most of you! In fact, I notice that Jenni has a Grandmother who is also a victim of this disease. Interesting, because my maternal Grandmother also had RA. She was diagnosed in 1929 and the poor woman died of complications in 1939. I was only 4 years old at the time so have no clear memories of her. No drugs of any kind in those days (except aspirin). So we have come a long way.

My first operation, a synovectomy, in 1969, was on the right knee (where it all started). Fortunately, it was a success - not all that usual, as the joint often becomes unstable shortly afterwards. I met several patients where this had happened. This operation is no longer performed, as far as I'm aware. While I was still in hospital recovering from the op. My right elbow reacted badly, and over the following several years gradually became permanently bent at ninety degrees. The radius became "trapped" in the diseased elbow, which meant I couldn't turn my wrist. This was solved in 1984 by removing the head of the radius, and letting the radius "float".

These ops. do sound primitive, don't they? The only surgery I've had recently has been a simple procedure to remove rheumatoid nodules on two fingers. They were a nuisance more than anything else and I'm glad to have got rid of them.

Most of you are in the first stages, or, at least, the first years of this wretched complaint and are still going through flare-ups. My experience is that things do settle down after a while, and with the help of modern drugs it won't, or shouldn't, take as long as it did in my case. But those first years are such a ghastly trial, I know. When I was first diagnosed I was told that I would have to lead a life of a lady of leisure because there was no hope for me (I seemed to be going downhill rapidly during the first few years). I've been lucky in that my husband takes a lot of the strain of everyday life off my hands - he's now virtually retired, and just works at home now and then, so he's nearly always available. He's a good cook and takes care of that side of life - I can't lift pots and pans or anything heavy, and even pushing the vacuum is heavy going. We take gentle walks around the village, and in Tunbridge Wells - on the Common when the weather is good. I'm a bit unstable on my pins after a few falls, but I've been doing balancing exercises which have helped enormously in getting my confidence back.

I wonder if any of you have ever tried special diets - or just cut out certain foods. Years ago, there was a lot written about such things, probably because there wasn't much else to turn to. Perhaps that's all changed.

Anyway, that's enough from me - I ramble on, don't I?

Take care,

Marian

Hi Marian

Thank you for this post I found it very interesting. My Mum had RA for 11 years before she died, basically of heart failure, and so did my Great Aunt who I would now think from your post, that she too must have survived on aspiring as she died in the mid sixties, I remember as a child she had very deformed hands very much like my mum in fact.

Please keep muttering too, just like our Lyn, we cant do without it !

Julia x