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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi my name is Louise and I was diagnosed with RA last October. I am a teacher in a secondary school and have really struggled with work this year mainly due to the side effects of the meds. I was started on Methatrexate, but had wheeziness and breathing problems, so was taken off that and put on to leflunomide. That worked well until I was put onto sulphasalasine as well and the two combined raised my liver function levels and caused me to come out in a rash from head to toe. I have now been off meds for 6 weeks and am in agony, especially my feet, which is not great for a teacher!! I have passed the two tests for enbrel and am going to see my nurse on monday for the first injection. Cant say I am looking forward to it either.
Am wondering how long I will be able to cope with full time work and what my options will be in the future. I seem to be on pain killers which make me tired all the time, and no matter what they give me, they cant seem to manage the pain in my feet.
I have just joined NRAS so I can get some support and advice from other people who have been through what I have been through. Dont get me wrong, the staff at the hospital are marvellous, but they dont have the disease, so I guess support from people who do is more greatly appreciated.
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hello Louise - welcome, but sorry you had to get RA to find us! Our stories are very similar.
I was diagnosed in February and have been on and taken off MTX and Leflunomide though still on Hydroxy. Pains are returning with a vengeance. I have a rheumy appointment on 11th so will see what is next. Glad you are able to start something new. Really hope it is a success and there are no unmanageable side effects for you. Let us know how it goes.
I'm Ailsa - shocked to find myself 50, living in Warrington with 4.5 of my 5 children still at home. I've been a single parent since the 'baby' (n0w 15) was 1. I also teach full time at a High school and fully understand how exhausting and demanding the days are. I'm actually waiting for a hospital appt to see about some 'hospital shoes'! Part of me dreads the ridicule I would be met with in class and the other part says I need the comfort and support to be able to dash around all day.
If you want to ask NRAS for my phone number or email to talk school and RA stuff, that'd be great. Hope you find lots of info and support on here as I have. Looking forward to getting to know you XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi louise
I am Jenni, 34, married with 3 children.
I used to be a teacher (primary) and know something about the long hours and trying to hold down a job with the RA.
I started on Enbrel in 2000- when it was first out.
I took it on a trial and to start with I came up in lumps (at injection site and a few other places) but they went and I did brill on it. Now they know this can be a side effect (because of people like me who braved the trial) and send you straight to see a dermatology specialist who give some cream!
I continued working while on it and felt so WELL! The fatigue etc left me very quickly and although pacing myself was important i did hold down the job for a good few yrs.
In the end I had to stop the enbrel after almost 3 good yrs on it.
A lot of people get their life totally back on the anti-tnfs.
Jenni xx
how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Thanks for your positive advice. I am really worried about starting Enbrel. My delivery is comming today and I see my nurse on Monday for the first injection. I dont like the fact that it will make me suseptible to all sorts of infections and i am worried about the fact that it is such a strong drug. I am in such pain with my feet and the steroids I am on in the short term just dont touch it. What do you guys think?
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Louise
Feel so sorry for you I know what its like when nothing seems to work even though you rattle with painkillers! Im Ceri diagnosed a year last May and still not controlled recently had steroid injection and dreading it wearing off... I work in a GP surgery and they are the least understanding of all!! Hope your injection goes well and things improve take care xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Louise,
Welcome to the forum!
It is a huge decision to make when starting on the anti-tnfs. I was scared before I started on humira but it has been a big help to me.
Even though I am recovering at the moment from a throat infection I have had no more infections in the 18months I've been on it than I had before.
Good luck with your first injection on Monday, and I hope the enbrel works really well for you.
Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi ceri44
not sure what to call you ----
i too work in a doctors surgery and know exactly what you mean about being the least understanding!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
so sorry i digress
hi louise
welcome to the forum--so sorry it has to be with the dreaded RA
i have yet to try MTX but have tried sulphasaliazine and alos had problems with the blood results so had to come off
i aslo take hydroxychloroquninine/co codamol/naproxen
i hope to start MTX next week --but like a lot of RA sufferers i have had the throat inf/virus that has been doing the rounds --not once but twice in the last 3 weeks
so may have to be put back-
wishing you GOOD LUCK for your first injection please keep posting
caz xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Dear Louise, Hello and welcome to the forum. My name is Fiona. I am 53 and diagnosed as R.A Positive at age 38. I have only ever taken Hydroxychloriquine for my R.A. I have 3 grown-up children who have left home and one 9 year old grandaughter. Regarding foot pain - the best shoes I have found for this are Asics Trainers and the ones I wear constantly are their Trabuco style. You can find them on the internet for sale. They do of course mean that I live in jeans 24/7 too! But hey, I always did love jeans! Best wishes, Fiona 
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Thanks everyone for your advice. At least I dont feel on my own anymore. I guess I have been lucky where work is concerned. My head teacher's sister has RA so he is quite sympathetic which is good. Twelve weeks supply of enbrel arrived today along with a sharps box and welcome pack. It all looks very scary and I feel inclined to tell my nurse I dont want to go ahead with injections when I see her on Monday. But I guess I will give it a go. Cant feel any worse than I do now after 7 weeks with no meds. Thanks for the advice on shoes too, I suffer the worst with my feet and have to use a walking stick to help take the pressure off them. Just about to start applying for DLA as well so I have that to look forward to this weekend!!!
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Welcome Louise
Sorry i have no experience about your drugs so cannot input for you. However
there are lots here that have with good advice.
You need to give it a try and hopefully 7 more weeks down the line you will
b egin to feel better.
I am Rose from Somerset aged 56 diagnosed nearly 2 years ago. Failed on
mtx sulph and leflun - see specialist next friday so i am hoping for good news
as really cheesed off with pain and fatigue. So fingers crossed they sort me out.
Keep posting
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi again Louise I will put my welcome to you here!!  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! I'm Lyn, married to Mike, we have four children, Abby 22, Ian and Jake 17, and Louis 15. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA 22 years ago and have since run the gamut of medication and had several surgical procedures along the way. Currently on Enbrel, Prednisolone and Naproxen and a jolly assortment of pain killers! Just about managing to get a recent flare under control after cessation of methotrexate (due to neutropenia) and temporary stoppage of Enbrel for an op. But heyho... I do voluntary work to keep myself occupied and although at times it stresses me out (especially when I want to do things and the body says no!) it has been a lifeline and help me keep a modicom of sanity. I had to take medical retirement from my job as a manager of a Legal Aid office some 20 years ago so being able to feel 'useful' still is reward in itself. Personal experiences from those who live with RA are so valuable. You have come to just the right place! Look forward to getting to know you. Do keep posting, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Louise, welcome, and sorry you have to be here. I was diagnosed just over a year ago too. Am on mtx and hydroxy. Dont talk about feet!!! mine are sheer agony!! I used to be a teaching asst, and unfortunatley my head teacher was less supportive and when I asked for part time she told me that "we dont have part time staff as it is bad for continuity!!" I agree that pain meds do nothing for this, will e xplore the foot wear suggested by Fiona though. Good luck with enbrel, I hope you get on with the injections ok. Hopefullly the enbrel will enable you to keep working for a good number of years. I now childmind, its very tiring too, but at least I am my own boss during the day. Take care BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Louise, Welcome to the forum, we are a friendly crowd with lots of answers. I am Lorna, I am married to Ken for 28 years and we have 3 lovely daughters the youngest being 16 and at high school. I have had RA for 3 years, I was very ill in the beginning, and was put immediately on the triple therapy which has worked for me and I am so much better now. Learning to pace yourself is the way forward, I find if I do too much I can lose up to 2 days. I hope you get on with your new drugs I can try to understand how you feel, that too is my biggest fear. You will find everyone a great help on here just keep posting. Take care Lorna x
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Thanks everyone for your support. Didnt sleep much last night as see the nurse at 0815 and still not sure whether to ask for a two week wait and then start the Enbrel or just to start tomorrow. Stomach churning with the prospect of it. Everyone around me says go for it. Still I am sure I will make a decision in the morning and will let you know what I decide. Any more advice will be well received though, especially from anyone on anti-tnf therapy. 
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Rank: Newbie
Groups: Registered
Joined: 1/25/2010
Posts: 1
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Hi Louise, I was started on Enbrel in August last year and like you I had lots of concerns, I did a lot of research beforehand. It has worked wonders for me and still does. Be brave and just go for it - also remember to follow the instructions to the letter. It gave me back my life. Good Luck. Jennifer7
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Thanks Jennifer7
Did my first injection today. Feel okay although site of injection very sore...will keep you posted as to how I get on. Hope all okay with you.
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