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Date: 02.03.2013
From: Heather

Subject: New to the site

Hi everyone. I've just found this site - been looking for a UK-based forum for ages and not sure how it's taken me so long to find this one!
I'm 35 and was started having symptoms when I was 27, but my RA diagnosis didn't come until 18 months later, when I was at work one day and couldn't get up from my chair (proper comedy moment - glad I can laugh about it now!) as my hips had seized.
They started me on sulfasalazine but the side effects were so bad that I had to come off them after 6 weeks. So I've been on hydroxychloraquine ever since.
Saw the rheumy last week and cos I've had two flare ups in as many months, they are thinking about changing me on to MTX. Bit worried as I didn't react well to sulfasalazine and have read the the effects can be pretty nasty for MTX too.
My husband and I wanted to start a family but agree that my health has to come first (if I can't cope with myself during a flare up then how on earth would I deal with a new born baby too?), so we're considering other options at the moment.
I had JIA from 8-15, but I've not been told whether there is any relation between the two. I never see the same Rheumy twice - it's always 'the same team', but it would be nice to have some consistency.
My RA affects my fingers, wrists, jaw, neck, toes, feet, ankles and hips. Whilst the pain is always there, I can cope with it more often than not. It's the exhaustion that comes with RA that is the killer. I'm trying to hold down a FT job (office manager) but it's getting increasingly difficult and I think I may have to reduce my hours to do 4 days a week soon.
Be great to hear about other peoples experience with RA, progression of their symptoms/disease as well as how you cope on a day-to-day basis - some days even opening doors is a massive undertaking!
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Date: 02.03.2013
From: Colin W

Subject: Re: New to the site

hi Heather , welcome to the forum

been on Methotrexate since 1998 myself & take 25mg at the moment , its a good drug if you can stand it & improve your RA a lot , folic acid deals with most the side effects & the consultants varier accross the country as to how much they give you

you could ask to try one of the new bio drugs , you need to have tried two Disease-modifying antirheumatic drugs but they like to include MTX as it works well with the bio drugs so would give it a try if I was you , check the National Rheumatoid Arthritis Society website through the link section above , they have a free helpline if you need it

hope you feel better soon
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Date: 02.03.2013
From: willis

Subject: Re: New to the site

Hi Heather
I've had RA smptoms for years but only really became bad (could barely walk) in 2010. diagnosed 2011 and put on mthx tablets, steroids, hydroxy. worked for a while then up the mthx went. then they tried sulful also but bad side effects. then DAS tested for anti tnf and now on 20mg of mthx injection a week, 40mg humira every 2 weeks, hydroxy 400mg per day. 5mg folic acid 6 out of 7 days
How am I? well better than I was definately but the stiffness hasn't really left it's just not as painful as it was. the weariness and tiredness is still there everyday. i worked full time but went part time. have done full time the past 3 weeks and boy am i feeling it.
RA becomes a part of life. you learn to live with it and fight it not to become your life or dictate your life even during a flare up :(
there are great people on here that will be a great support to you and you can come on here and scream and shout or cry and everyone is there for you. Give the MThx a go and perhaps speak to specialist about some consistency on who you see as it will make you feel more secure knowing that you have one nurse and one doctor.
hope you get some better relief soon.
x
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Date: 02.03.2013
From: Tara

Subject: Re: New to the site

Hi heather welcome to the forum
My name is Tara and I too have ra I m on 25mg of mtx consultant put it up from 20 to 25 4weeks ago because it hasnt been very effective I was having constant flares I haven't had any side effects really my hair got a bit thin and the tiredness is pretty bad but that's a symptom of ra so not sure if its the mtx or ra any way I would give a go you won't know til you try it
I hope you feel better soon hun
Keep posting :-)
Tara
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Date: 02.03.2013
From: rhona

Subject: Re: New to the site

Hi Heather,

Welcome to the forum. I was diagnosed with r/a about 12 years ago but i'm sure i've had it a lot longer. I have been on mtx for approx 8 years and i have never had any problems with it although to be honest i don't know that is helps me that much. I am now on one of the biologic drugs called rituximab and feeling a good bit better with it. Most people do try mtx and it does seem to help a lot of people. If you do take it you will get regular blood tests so any problems with your liver etc would show up right away and you would come off it or stop it until your blood results became normal again.

It is a worry especially when you are so young but the good thing is that they now have drugs that can help a great deal and even put people into remission and they are discovering more about the disease.

I find if i do too much one day i can suffer, so it is best to try and pace yourself and accept help for things that are difficult for you to do.

I hope that things will improve for you soon.
Take care and good luck with whatever you decide. x
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Date: 04.03.2013
From: Heather

Subject: Re: New to the site

Thanks for the responses everyone. I think I'm going to have to call the hospital tomorrow to see if I can get in to see they rheumy this week - I'm having quite a severe flare-up. The usual rest over the weekend before the working week did nothing and today I've got new stuff happening, including a very painful little finger which is turning pretty gnarly (I've nicknamed it Gnarly Marley!) - it's never happened this quickly before. I have no idea how I'm going to get through this week at work.
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Date: 08.03.2013
From: Heather

Subject: Re: New to the site

Bit of an update as I went to an emergency rheumy appointment today...he's given me a course of oral steroids (10mg daily for 7 days, then 7.5mg daily for 7 days, then 5mg daily for 7 days). If there's still no improvement, then it will be methotrexate for me.
Any ideas how long it may take for the steroids (prednisolone) to kick in?
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Date: 08.03.2013
From: rhona

Subject: Re: New to the site

Hi Heather, they should kick in fairly quickly perhaps a day or two but the only problem is when you stop them the benefits might wear off quite quickly. I think you really do need something that you can take more long term. Try and get that earlier appointment with the rheumy. Good luck x
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Date: 10.03.2013
From: Dave

Subject: Re: New to the site

Hi i am new to this site i have arthritis in my knees,i had x-rays done and was told about the arthritis,i presume its osteio he never said.My GP gave me Neproxen and i have only 4 days supply left and give that it can sometimes take me 2 weeks to make an appointment i could be in trouble.
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Date: 11.03.2013
From: marlene

Subject: Re: New to the site

Dave, call your surgery and ask the receptionist if the gp could write you a prescription for collect until you see him/her again.Wish you luck
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Date: 11.03.2013
From: Dave

Subject: Re: New to the site

Thanks Marlene i will call round at my GP tomorrow and see if i can get a repeat prescription.I have been swimming today and it felt good in the water,i am going again tomorrow.
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