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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Hello Everybody, Just wanted to introduce myself. My name is Kim and I am 49 years old. I live in Kent and I am married with 4 children. Been a tough couple of years with my husband having to go away to work abroad, then my youngest daughter being diagnosed (and seriously ill) with SLE and then I got diagnosed with RA just before Christmas. But I am a tough old bird! My daughter and I have 3 meds in common (!) and at the moment I am on Prednisolone, Hydroxychloroquine and Methotrexate. Hands and shoulders seem to be the worst affected and the tiredness, oh my goodness! I feel like an old lady! Hopefully when my meds kick in I should have a bit more energy? I do volunteer work for Lupus UK and also in a local school. Pleased to meet you all and look forward to sharing with you 
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Kim,
welcome aboard.
it's very tough when first diagnosed and i should imagine hard for you with your Husband working away and your Daughter being unwell.
hope your meds work for you, it's a slow process waiting. my shoulders were the worst when i was diagnosed in June 2010, and the fatigue does play a big part. when i joined the forum one of the first things said to me was to learn to pace yourself.
you will always find support and information here, so keep posting away.
i'm 58 married with a Daughter, currently taking 10mg Methotrexate, Hydroxy and Humira added nearly 7 monthsago which is now working for me.
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Kim Hello and welcome to the forum, and pleased to hear you will keep in touch too  I am sorry to hear you and your daughter have gone through so much, it is so good they have now so many drugs to help us these days. I hope you both make good progress, and the meds start to do their job, it certainly can take time. I have always had it bad in my shoulders ( many like me think that area is the most painful ) wrists and hands. I am 56 snf have had RA for about three years, as the dmards were unsuccessful for me I now take the biologic drug called Cimzia, which is controlling things very well just now, I live in Kent, North west near the M25, don t forget to have a look for the NRAS meetings, there is one coming up soon on the 20th March, the Maidstone group. I went last time ( or tried to but got lost at the roundabouts coming off the A2, so a friend might be able to take me as he has Sat Nav ) Best wishes Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Kim, and welcome to the forum - lots of info and support on here, so hope you keep posting. Sorry to hear your daughter`s diagnosis too - you have a lot on your plate. I`m Kathleen, married to Nick, and I`m 61. We live at the opposite end of the country to you - just outside Durham City. We have two sons and two lovely little grandsons. I was diagnosed over 6 years ago, and currently take humira, plus various other painkillers etc. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Kim,
Welcome to the forum but sorry you have RA and sorry to hear your daughter's diagnosis too, you must be devastated.
I am 62 and have had RA for 11 years, now on mtx and humira. Married to Ian, and we have one daughter hannah who is 23 tomorrow!
Looking forward to getting to know you.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Kim
Nice to 'meet' you, but I'm sorry it's under these circumstances. I am Naomi, aged 47 and I live in Devon. I was only diagnosed in August 2011 so I'm afraid I don't tend to offer much advice as I feel like I'm still wearing my L plates. I have had a lot of 'lupus type symptoms' according to my consultant and she still thinks I might have an overlap disorder, possibly SLE, so I can relate to what your daughter is going through too. In fact I was originally told that I more likely had SLE than RA but the RA was confirmed after an ultrasound scan last year. I was told at the appointment and it came as a big shock. I hope you like it here on the forum. I have found it a great source of support and information as I have navigated my way through this awful first year. There's always someone who's tried the drug you're on or suffered the same physical or emotional symptom so you feel less isolated. I look forward to your future postings. Best wishes from Naomi.
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Ah ladies, thank you so so much for taking the time to reply to my intro. I appreciate it very much. You are ALL very kind.
Suzanne,I am struggling with the 'pacing myself' part, think thats why I am so tired today. But I know what you mean, thank you.
Julia, will definitely try to make the meeting on the 20th. That's the one at Aylesford isn't it?
Hi Kathleen and Doreen, thank you for your messages, nice to meet you both too.
Naomi, lupus and RA seem to be quite similar in some ways don't they? My daughter has been relatively stable for the past 6 months or so. I understand meds take time to kick in and work.
Look forward to getting to know you all better.
Sleep well - Kim.
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Kim The Maidstone group is at Aylesford, I hope to go subject to a lift, or I buy a Sat Nav  Hope you are able to make it they are a lovely group of people. Best wishes Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Kim,
Welcome from me, you have found a great place for advice and friends who all share in the one common
factor and that is the dreaded RA.
I am Rose, from Somerset and aged 57. I was diagnosed 2008 and still trying to get me sorted, failed
on DMARDS and TNF's.
Keep posting looking forward to geting to know you
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 Kim 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 have found us and NRAS! I'm Lyn, married, with four 'big kids' Abby 24, Ian and Jake 18, and Louis 17. We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with RA almost 24 years ago and have since run the gauntlet of medication, had several surgical procedures along the way and looks like more in the offing! Currently on Prednisolone, Methotrexate, Naproxen and seem to have just failed on Rituximab (that was rather carelessness of me wasn't it?)! I was previously on anti-tnf for 8 years but had to stop due to lack of efficacy and various other problems along the way. Add to that a bucket load of pain killers and other bits and pieces! But heyho... fun times ahead! Sorry to hear of your daughter's diagnosis but glad that it seems settles for now at least. Many of these auto-immune diseases do overlap making diagnosis and treatment very difficult. Hope your meds start to work soon and bring about an improvement for you. Pacing isn't easy as we all feel on the days we are well we have to get on with things. Basically, heavy jobs should be spread throughout the week interspersed with lighter jobs and a rest day every other day. Once you get into a routine it does become easier and you will feel the benefit. Look forward to getting to know you Kim. Do keep posting  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Kim
Welcome to the forum!
I'm Jean, almost (gulp) 68. I'm married to my lovely Steve who is also my carer and have a daughter, Lucy, a fab s-i-l, Darren and two grandkids George (6) and Livvie (4) who are both as mad as hatters but keep us young!
I've had RA for about 10 years and although I'm currently confined to a wheelchair, I have a good life with family and friends.
As for pacing yourself - tell me about it! We all KNOW we should do it, but when we feel good, the temptation is always to go mad and do all the things we haven't been able to do for a while.
I'm sad to hear about your daughter, but pleased things seem to be under control at present.
If you are within reach of Coventry, we are having a get-together (see under this post) lunch at the Hilton Hotel, Coventry on the 19th May. There are about 25 of us so far, but there will be quite a few more as time goes on
Look forward to gettingt to know you and take care
Love Jeanx
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Hi Julia I promise I will do my best to get to the meeting. I do drive but I am not the worlds most confident driver and night-time will be worse for me. But fingers crossed anyway. Have a good weekend!
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Hi Rose Thank you for your message. Nice to meet you too! As I am new to RA could you just explain what DMARDs and TNFs are? Thank you. Take care. Kim.
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Hi Lyn Thanks for welcoming me. Everyone is so friendly. Its nice to not feel 'alone'. Lyn is Thornton Cleveleys a seaside town? I seem to recall when I was a little girl that we went to Cleveleys (we lived in Salford at that time). Or maybe my memory is going  I am sorry to hear you have had such a hard time with RA. I realise it affects different people differently. I must admit I wonder sometimes how far my RA will go. Since the doctors have put a name to my symptoms its as if the RA has just decided to 'go for it'. Definitely more aches and pains. But not complaining. What does anti-tnf mean? I hear what you are saying about pacing things and I am smiling because you said 'we all feel on the days we are well we have to get on with things'. I was wondering do you have a camera in my house because that is exactly how I am ha ha. Have a good weekend! Kim.
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Hi Jean Thank you for your post. No need to gulp because you are (only) 68 I am turning the big 5-0 in July. Age is but a number  I am sorry to hear that because of RA you are confined to a wheelchair but happy that you don't let it get you down. I was in Coventry 2 weeks ago, my son had an interview at the university there. It is a little far for me to come but I will have a think about it. I do like an adventure and its just myself and my son at home so there is nothing stopping me. Will let you know, thank you for the invite! Have a good weekend and take care. Kim.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Kim Good to hear from you It would be lovely if you could join us at the Get-Together in May. Julia is coming, by train, from quite close to you and staying two nights at the Hilton (as are a few of us!). It would be a great experience for you as it is so good to meet with others with RA; we are like an extended family and have a lot of fun at our meet ups! Usually laughing from start to finish DMARDS are Disease Modifying Anti Rheumatic Drugs, they are drugs used to alter the course of RA disease and include things such as Sulfasalazine, Hydroxychloroquine, Methotrexate and others. Anti-tnf are the next line of treatment and are chemically engineered proteins. Certain functions in the body cause inflammation, one of these is tumour necrosis factor; these drugs act on the tnf which in turn reduces the level of inflammation. There are a number of other drugs available that work on specific things such as B-cells, T-cells or IL-6. Quite a lot of things in the pipeline at the moment! The idea is to bring about control of RA by using the least toxic form of treatment and hence the reason you may start on something like Methotrexate, one of the gold standard treatments used in RA. Anti- inflammatories (such as Naproxen and Diclofenac) and pain relief help to control only the symptoms of the disease and not the disease itself. It's a lot to take in at the start, and much of this information you may never need ... I have plenty of experience! The disease is much more controlled these days because of the availability of successful treatments, hopefully you will find yours is stopped in it's tracks. Yes, Thornton Cleveleys is a seaside town! I live about 0.5miles from the seafront and about 4 miles north of Blackpool. Gosh, isn't it a small world?! My daughter completed a masters degree at Salford Uni last October; she's now working in Stratford Upon Avon. I have one son who started uni in Lincoln last September, his twin going to Leeds this September and I'm about to start the rounds of uni visiting yet again with our youngest son for 2013! I know more about unis .... !!! Heyho! Does your son start this year? Has he made his choice? A lot to consider! Enjoy your weekend, Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Hi Lyn, Thanks again for your reply and for explaining about DMARDS and the like. Yes it is a lot to take in but that has helped! I was wondering where I could find out (the simpler the better!) about what things like ANA/ANCA/anti-CCP etc etc mean? For example what is normal and what isn't? The three things I mentioned came back as negative for me so what does that mean? How do they test for RA? Is there a specific test that pinpoints it or is it more complicated? I am confused (doesn't take much!!). Ah Cleveleys - I have fond memories, yes small world My youngest daughter (the one with SLE) was at uni in Portsmouth (great uni) but transferred to Greenwich after her bad flare (to be closer to home) .She is studying psychology. My son has looked at De Montfort, Coventry, Uni of Hertfordshire, Coventry and Loughborough. I have a feeling he will go for Loughborough with Hertfordshire as his back-up. He wants to study Product Design and yes, hopefully start this year. Will def let you know about May. As I said, hoping to go to NRAS meeting in Aylesford next week so might meet Julia there Thanks again - Kim.
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Oops said Coventry twice, meant to say Brunel. Went to meeting at Aylesford and thought the rheumatologist that spoke was excellent (Dr. Saha). So glad I made the effort. Hope you are all having a good week. My energy levels were less than zero yesterday with pain but today I feel great. Must be because the sun came out Take care - Kim x
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012
Posts: 46
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Haven't posted in a while so thought I would come on and say hi and see how everybody is doing.
Got off the steroids only to go back on them again. Picked up quite a bit of weight and zero motivation to exercise but I am going to take myself by the seat of my pants and give myself a shove in the right direction.
MTX is taking its time kicking in and I have been quite sore and still quite a bit of swelling so rheumy wants me to add Sulphasalazine (sp?) to the mix. Does anybody reading take this tablet? Be interested to hear. Still taking Hydroxy.
Have learnt to pace myself. How is everybody else? Isn't this constant rain and grey skies depressing!
Take care - Kim x
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Kim,
I live in Sidcup Kent (S E London really).
I'm fairly new to this game, am on MTX which seems to be doing the trick, very few aches and pains at the moment but am still quite tired.
I used to do quite a bit of exercise before the RA appeared, have been a bit worried about starting up again, I dont want a set back so am giving it a few more weeks, by that time I will need a kick to get me started again!
One thing I am finding difficult is pacing myself, I'm glad you have managed to do that.
The weather is very depressing, it would be lovely to see a little more sun.
Hope the MTX kicks in for you soon.
All the best
Mary
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