Hi Eve,

I'm Lorna I am 51, married for 28 years and have 3 daughters. We all live in Fife, like you we have lots of snow at the moment. My story starts 3 years ago, I was a very active and busy outdoors person. I do lots of work in my garden and we have lots of trees which need attention. I had been visiting my eldest daughter in Norway they were getting the driveway done, I was asked if I would help to complete it as the rains were due that weekend and it had to be finished. So me and the two lads set to work, we did get things finished and it looked amazing. Once home I was then busy cutting back our garden trees. We have lots to keep under control so lots of work was needed here also.

Then on the 3rd of November I went for my yearly flu jag as I have asthma. I had had this for around 5 years without any problems, but this time within 3 days my fingers started to stiffen, right away I thought this was my work in the garden. The week later my arms neck and shoulders were the same. I had been carrying bits of tree on my back, so again I thought it was the garden. This time I slowed up a bit and took more care. Then the following week my back and other joints started to flare, I now knew this was more than gardening. After a number of visits to the doctor I was no further forward, nothing other than inflammatory markers showed up. By now I am virtually bed ridden and can hardly move, I'm taking 14+ pain killers per day and they are not touching the pain I am in. Again I go back to the doctor I really think something is dreadfully wrong for me to be this bad. I am called that evening by her to tell me a Consultant will see me the following day.

When I walked into her consulting room she told me I would not walk out as bad as I had walked in. We chatted about how I was feeling, she examined me and had me go along for X rays. When I returned to her room she told me she thought I had RA. I had said I didn't think so as I had never heard of this before. I was told a blood test would prove this, and two weeks later I was asked to go in to see her and was told I had RA. I was devastated what did this mean, was I to be an invalid forever now. The Consultant was great all was explained and I was given a folder of everything I now needed. To cut a long story short I collected my triple therapy drugs on the Monday and began my regime of taking them. It was a long and scary journey but 3 years down the line I keep really well as long as I do not overdo things. I have no pain and can do everything I did before, I just have to pace myself and stop when I am tired. Lorna x

Hi Eve,

The triple therapy is what we do in this part of the country. It's MTX ,Sulphasalazine, and Hydroxchloroquine. and Folic Acid. I was on Omeprazole and Melexicam in the early days. They were started in staged doses the aim to aggressively attack it head on and hope for remission. I stopped the Sulph a year past August and I see my Rheumatologist again on December 16th and I think I may be stopping the Hydrox as well, she had said so the last time saw her. I take 6 MTX tonight again. I missed it last week due to a sore throat. It is a long haul getting used to these drugs but believing in them and being positive makes all the difference. Hope this is a help to you. Lorna x

Hello Eve

Welcome to the Forum who will get a lot of support on here, I know I do.
I know it is difficult coming to terms with RA, 2 yrs down the line of being
diagnosed I to struggle.

I am Rose from Somerset aged 56, and diagnosed 2 years ago. Been on mtx,
Hyrdo, sulpha and llefunomide and all failed with me I am afraid. Had 1 councel
session and get another in 2 weeks time so then I hope to be on TNF.s. I am
in a painful state at the mo so want releif asap. The fatigue is a HUGE problem also
to me I really do have to pace myself.

I am relaxing this pm cold wet afternoon watching The Circus dvd of Take That
with a cuppa. Just the job.

Keep posting


Rose

sorry, should have typed anne
....eve x

Hi eve

I am Jenni and am 34 now. Been a member of NRAS for about 7yrs now. I joined as I was young and needed to meet other people who were young minded at least, some of who know about severe disease.

I started with the RA when I was 20. I know now, looking back that when I was about 18 I had lymes disease from camping in the new forest but at the time was diagnosed with glandular fever. I know it was lymes because I had a circular rash up my legs and i recently had a test for Lymes which showed historical infection. Anyway I used to skate, did a lot of aqua fit and step aerobics, swam, did dancing, went out lots etc. My big love was perfoming music in various bands....

Generally I was really well, I was at university doing music, world music and teaching. Then one summer I hurt my shoulder and it never did go back right. Then I kept loosing my voice and felt awful. I was very tired a lot of the time. I keep going to the dr and it ended up that I felt like I was making it up but I knew I wasnt. Then I thought I might have something like Leukemia. eventually the gp gave me some steroid having tried every antibiotics going I felt fab! By then I had stiff fingers in the mornings and asked for blood tests but the GP didnt see the point as it was "a virus" and I was stressed at uni etc. In the end he stopped the steroid suddenly and in hours i had started what I know now was a flair. It was as if I had swallowed a golf ball and it lodged in my foot. I couldnt bear a sheet on it and in the end I rang a locum who came. The locum was a newly qualified gp and thought I might have rheumatoid. I explained my gran had that and she got it at the age of 14. he said it didn't make any difference but he would just do a blood test and gave me morphine.
In the morning, my regular gp was on the doorstep. The result was back- he had never seen such a high Rheumatoid Factor. My dad took me and we saw rheumatology within a wk. I had RA. I was so relieved to be diagnosed! upset yes but so pleased I wasnt a) mad and b) there was something that could be done.

I started on sulphazalazine with the then new idea of hitting the disease hard from the off. Soon onto max dose with no effect. Added in steroids, and then onto MTX. I took ever higher doses of that up to 35mg in the end (then dont allow that dose now) ended up with liver probs and so back on steroid and then in 2000 my then consultant offered me the chance to go on a trial for a new anti-tnf. I had to go to London to be poked. It was daunting to be told at the age of 24 that I had the 8th most severe disease in the country. I had been in and out of hospital many times by then unable to move at all in huge flair ups. Anyway I got on the trial for Enbrel. Within 24hrs I felt different. It was brill!
Then, after a few months I started to get site reactions and then these strange lumps down my sides that were red, raised and itchy. I did mention them to the hosp but was roundly ignored and then had an emergency operation one weekend when I found I had an abscess. Pretty awful. But I went back on the Enbrel and did fairly well on it for a couple of yrs. I had all sorts of hydrotherapy, wax treatments and OT/physio over the yrs.

Personally, I had married someone older than me and he was very kind to me to start with, but turned out to be a very controlling man and he became pretty abusive over time. In short, we divorced following a sudden incident when he was arrested. I did this on the Enbrel. I got through all of that and applied to be an adoptive parent. I was teaching part time in a very supportive and lovely primary school. I had the children for a few yrs and then out of the blue met and married the lovely Richard and we adopted the children together.

The Enbrel stopped working as well and then all summer I had one water infection after the other- had a lot of groin pain, eventually ending up ambulanced in with renal failure and pylonerphritis.

Didnt go on Enbrel again after that, went onto triple therapy (MTX, SZ, Hydroxycloroquine) (no positive effect) and then leflunomide (no effect). Tried humira after much trepidation and had a severe reaction of severe D and V and confusion- it caused cranial nerve damage. After that, there were no viable drug options so I took steroids. As I was off the meds, we went to Bath national hospital for rheumatic disease for help and they supported us in our idea to try and have a baby, we were really sad to realise that we had a 3% chance of conceiving and so decided to try a new drug in the summer. Felt unwell and had a big flair and went into hospital they diagnosed me with diabetes and explained that I was pregnant! 7.5mths later I had Bernice. She was 6 wks early- we were both poorly. I had multiple organ failure and odema with eclampsia- HDU. But she was worth it. We made it through. Richard booked the snip the day we brought her home!

When Bernice was 5 mths old I went into have Rituximab. By the middle of the first infusion I knew something was wrong. High blood pressure and fast heart and super high blood sugar. I ended up with serious neurological complications. Spent most of the summer praying I hadnt got PML (which is quick death stuff). I hadnt got that but I never have been right and there are patches of non feeling and burning in my legs ever since.

I decided after that I would try not to have any RA drugs and just take steroid. By then I was under endocrinology for the diabetes (insulin+metformin etc) and they found I had had so much steroid over the yrs the adrenal glands had stopped working. I now have to take hydrocortisone. The doses of steroid were no longer the answer they once had been.

I transferred to southampton general as now it wasnt just the ra going on i needed some wrap around care (although it has never worked like that in effect- communication is simply dire). My consultant is excellent.

I have taken tocilizumab to have anaphalaxis and then have some medics deny it ever happened.

Spent lots of time in hospital over the years and like to spend most of the time avoiding seeing the buggers! A lot of time in there this yr but we have had personal things going on at home, our adoptive daughter who was then 12 developed marked mental health issues having always had some difficulties and moved to live a specialist unit. We all miss her a lot. It is almost as if I have physically held it together with an increasingly disturbed child, trying to keep littly safe and help our eldest hold on too.

Most recently I have had success taking Cimzia. It is a fantastic drug on the RA- although my bloods would be reguarded as high for a normal person, they were tonnes better. Unfortunately the Cimzia made the neuro probs much more noticable again and I have been in and out of hospital for most of the summer. I cannot have the cimzia- I put up with it for sometime but when I couldnt feel to swallow knew it was hopeless.

So my dr has suggested I have Abatacept. I am waiting for it. Yes, i do get scared but uncontrolled severe RA is no pretty picture either.
Bone wise, i have damage now but really it is the systemic problems that hit me. Systemic RA effects all your body systems really.

I have to say that bearing in mind the above I like to think of myself as positive and cheerful- fiesty certainly. I have a thing at the moment that I want to become a social entrepreneur. I am therefore desperately trying to manage a wkly course with some support on a tuesday and become a social entrepreneur and develop and wrap around services for adoptive families. It means some days in bed afterwards.

Family has been and remains hugely important to me. I am very maternal and wanted to be a mummy. My children know about the ra and although things are not the same here as they are for their peers i have never relied on them for care and have pretty s trong views on this (plus a few other things!) With good support here, the children have never missed out on much in the way of outings and clubs and I have saved up etc to get them onto trips (not all managed but many). Being incapacitated means I have had the chance of quality time I never would have had the same had I been the career woman I once wanted to be.

I have 4 Personal Assistants which mean that Richard can work 4 days a wk and my parents and sister remain a huge support. I have had a great deal of support on here over time, made some friends who are no longer regular board users but keep in touch. I dont want anyone to read this post and feel disheartened. There is a LOT of life to be lead even with severe RA.

Wow, Jenni - follow that! I am lost in admiration in how you cope with everything you have gone through.

Eve - I'm Sue-59 and a teacher with 3 children, the youngest just finishing uni. I was diagnosed in Oct 2009. For maybe 2 years I had had on and off trouble with my knees and elbows. It began with my knee, I would suddenly find it really hard to bend it. I could bend it without pain if I lifted it with my hands but if I tried the 'normal'way it was agony. My Gp said it was tendonitis and said take ibuprophen. I did and within 4 days it was better. It happened at intervals afterthat, always clearing up in 4 days so I coped and didn't bother to tell my GP. Then I had similar episodes with my elbow. I could move my lower arm sideways but certain movements were really painful, again I could do them if I provided support with the other hand. At the same time I was waking up with stiff hands most days - I put that down to the way I slept.
I finally went back to my GP in August 09 as the knickles of my right hand becam very swollen. He is really good and immediately said the thought it could be RA and referred me to the hospital. My cosultant said I probably had some sort of inflammatory arthritis, take paracetamol and come back in 6 months - I was not impressed.
Co-incidentally I had an appointment at a different hospital the following week. I also have angio-odema which is another auto-immune disease. This consultant commented on my knuckles and immediately arranged a CCP test. Within a short time I had a call to say I had a CCP score of 340 and a rheumatoid factor of 233. I had RA. Why that bloodtest wasn't done before I do not know!
I was put on hydroxy in Oct 09 and mtx was added in Feb 10. Unfortunately, although my RA has responded well I have not been able to get above the starting dose of 7.5 mtx. Every time I go up to 10mg within about 4 weeks my white blood count drops below acceptable levels. I see her again in Jan and am wondering if someting else might be added as I am definitely more creaky than I was.
Take care
Sue

Hi Eve,

As another newbie it's really interesting to read everybody's stories. Here's mine. Always active, tap dancing, jazz, belly dancing, gardening, coastal path walking, physical job, a work hard play hard sort of girl. So inevitably a few aches and pains but always put down to wrapping 200 bars of soap in one go, 6 hours cutting down hazel trees, that sort of thing, overdoing it, it'll be fine in a couple of days which it usually was. Until the lump on the bottom of my foot that wouldn't go away, the pain down one side of my left foot and then the other foot started in the arch at first and then the ankle, hobbling like an old woman first thing in the morning.

Saw the GP who diagnosed tendonitis and gave some Voltarol which worked for a bit. The GP said that if it carried on then to go back for cortizone injections. Well, having a thing about needles I stayed away for about 10 months and tried everything else, strapping my feet, orthotics, massage and an osteopath mainly. After a couple of sessions with the osteopath and getting to the point where I couldn't bear him touching my feet he suggested going back to the GP for some bloods for RA. Couldn't get the bloods until the GP had sent me off for x-rays it was like he couldn't believe that the pain wasn't down to some trauma or another that I was hiding from him! X-rays 'normal', which is wrong because the Rhummy says I've got some damage in my left foot which is going to create a bit of trouble later on, not sure what that means but I will ask on Tuesday.

Bloods came back, "you may have RA" off to the Rhummy who confirmed it on bonfire night, that was some firework display! As the Rhummy said, if I wasn't so keen to use my feet I probably wouldn't have noticed this yet! Gee, thanks mate. My poor husband has had to deal with all this only 3 weeks after his dad's death and me being a bit more of a mad woman than normal going from screaming banshee to gibbering tearful wreck to joking about having a bad hand job day in one quick move! So, tricky time all round, hoping the MTX works, seeing the OT next week now, it was supposed to be last week but getting 17 miles on icy roads for a 9 a.m. appointment was not attractive so I postponed it. The RA seems to have made a beeline for my hands and jaw as well over the last couple of months and trying to work out what happens over the next 20 years or so! Even my smoking cessation counsellor said that I was trying to deal with too much, it was not the right time to give up smoking and to go back to see him in the new year! He'd never said that to anybody before but I'd had a particulary viscious phlebotomist 10 minutes before seeing him, yes the needles thing is still not good, and I was in a right old state, so I'm under medical advice to smoke! I'm determined to pack it in but not just yet, I think it must be the same as dieting you have to be in the right head for it and mine is not there at the moment.

A couple of things which strike me is that we seem to carry on regardless like the martyrs us women are sometimes and ignore the tell tale signs and GPs don't seem to be very clued up. So I'm trying to adjust to not being superwoman or a martyr, pacing myself, asking for and accepting help and all the other things I should do but which don't come naturally. Does RA seek us out to teach us a lesson?!
Trying to stay sane and jolly but failing a bit at times
Sara

Hi Jenni
Thanks so much for sharing your story with us! I have so much admiration for you for all you have gone/are going through. Youve coped from such a young age with so much bad stuff..Thankfully you have such a great family and you really are inspirational thank you xxx

a big thank you to everybody for joining in with this topic. As well learning more about RA and its treatment it's been good getting to know you and some of your wicked senses of humour!