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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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i'm Suzanne aged 57 and recently diagnosed with RA.
i've been on Methotrexate 15mg for 3 months ... but unfortnately it hasn't worked for me so far. i thought it had at the start but now realise that was because i had a Steroid injection to kick start me which has now worn off.
i've spoken to my RA Nurse today who said don't despair this is still early days, and have to say the support i've had from the Hospital has been brilliant. she's arranged an appointment for me to see the Consultant on Monday afternoon to review things. i wasn't due back until the end of November so am thankful that they have fitted me in.
am more than slightly anxious as i was a nervous wreck when newly diagnosed and got myself into a terrible state about having to go onto Methotrexate as well as accepting the condition, and now i've got more to face having now got the confidence in taking the drug. i realise this is a slow process to get you sorted, my pain has become awful again in my shoulders, wrists and hands.
i also have Osteo Arthritis in both my knee's and i know they will need replacing in the forseeable future.
so feeling downhearted as i type this but have been grateful to read the Forum this past week or so and feel i'm not alone.
some personal info i have been married 38 years and have a Daughter aged 28 ... i live in Buckinghamshire.
i hope i can add some input to the Forum once i'm more up and running.
thanks for reading and will post how i get on next week.
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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 Welcome to the forum Suzanne *sticks the kettle on*
I'm Helly, 35yrs old, live in Leicestershire and was born with juvenile idiopathic arthritis, which was diagnosed just before my 3rd birthday.
Sorry to hear that the methotrexate hasn't work but it is early days and medicine has come such a long way... its just finding that right combination for you... bit like finding the right pair of shoes to go with an outfit (obviously not as fun...)
Totally understand how downhearted you feel, not only do you have to try and understand this condition you've been diagnosed with but also the medication, treatment and feelings that it brings. You'll have good days and bad days. For me, the most frustrating part is the tiredness. I can be full of energy one day and then its like its been sucked out of me. Even changing bed covers leaves me exhausted and you end up just wanting to bang your head against a wall.
You'll learn a lot over the coming months, in fact you probably feel overwhelmed with all this new info... Just remember that everyone is different, and what works for one, may not work for another...
For me, my arthritis is 'Arthur', a toddler who has the occasional tantrum. Most of the time I try not to give in to him because I don't want him to rule my life but at the same time, if he's tired and grizzly then I let him rest.
I have rest days, particularly after I've been to the gym, or had a hectic day. This is when I pamper myself, potter around the house, have my favourite foods for lunch or dinner... Sometimes I do get frustrated because I want to be busy and don't think I should be resting, but thats where my music comes in... I love music, its food for the soul. I put on some tunes that will get my feet tapping and before I know it, my mood has been lifted.
Looking forward to getting to know you xx
Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Hello Suzanne and a warm welcome from me in West Yorkshire.  Unfortunately getting the meds right is a long and tedious process. Some people start to feel well immediately, others have to juggle the meds about till they find the right one. We all understand on here just how you are feeling right now. 3 months IS ealy days yet but try not to despair, once the initial shock and turmoil have settled down then things will fall into place. Have you been offered an Occupational Therapist or a physio etc? I found hydrotherapy to be really useful. Also get some wheat bags, they are fabby! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Suzanne, and welcome, I'm Barbara aged 57 marriedd to Roy and have 2 adult sons 1 adult daughter and 1 daughter doing her A levels. I was diagnosed just over a year ago. It still seems like its not real. My meds are mtx hydroxychloroquine tramadol lyrica (for fibromyalgia) so far its still not controlled, except when I can have a depo injection!! Anyway, we're a friendly lot, and have lots of people with immense knowledge, so ask away, and as for feeling down, its normal, and necessary really, to get your head around the illness. Keep posting and looking on the forum to see whats happening. Take care, and I hope you feel better BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Suzanne, My name is Lorna, I have had RA for almost 3 years, I was very ill in the beginning, I was virtually bed ridden. It was horrendous but after taking the triple therapy I am so much better. So please try to stay positive It will get easier. I'm 51 and happily married to my lovely husband Ken for 28 years, and we have 3 grown up daughters the youngest being 16. So sorry you have RA and are struggling at the moment. I hope you will start to see an improvement soon. Try to be positive it does help, no one likes taking the tablets but you do have to believe they will help you. It was mind blowing for me at the start too. Try to look forward and a big hug to cheer you up. I really do understand. Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Welcome Suzanne, Big welcome to the forum you no doubt will find this forum excellent for getting things off your chest but also for advice of numerous things. I joined in April and have definately found this. My name is Rose aged 56 from Somerset I was diagnosed nearly 2 years ago. I started on MTX but unfortunatley i eventually had to give up after 3 tries. Went on leflum a few months ago but also advised to stop this as well. I am at present waiting to see my specialist to see what to do next. I am afraid it is a big waiting game sometimes. I do read lots of posts on here though that do get better once the medication is sorted. I am at mo getting releive from depo and celebrix (anti-infl) and amitryp. Chin up we all get down - I def have my fair share, and the fatigue is awful. Keep posting Rose
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Suzanne A great big welcome to the forum, it is good you are here, always someone to help as you have seen from the posts already Sorry to hear the mtx has not yet kicked in, good that your nurse has arranged for an early appt with the consultant, I feel if you have good support from the rhuemy team it makes life so much better to handle. I am 54 and was diagnosed about year ago, I can t take mtx. so been on lefunomide but hasn t worked so now going to have ant- tnf treatment in the near future. Let us know how you get on with the consultant, take care. Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Suzanne I'm 53 and had ra for 3 years. My knees and fingers have been affected the most. At the start it also affected my shoulder very badly and I couldn't raise my arm but now it's virtually ok- just a little pull on the muscles. Yes, it can take a while for drugs to kick in. When I was first diagnosed I started on sulfasalazine and it took about 4 months before began to notice any difference and another two before I felt I was able to get back to some sort of 'normal' life. I knew that I would have to slow down and make adjustments- not easy for someone who's as impatient as me!Unfortunately it became less effective so back in May methotrexate was added to the sulf, 10 mg just to see if I could tolerate it. There seemed to be a slight improvement ,and the dosage was increased to 12 mg at the beginning of July. No sign of an improvement until this week, but the last 2 days there's been hardly any pain and stiffness, so fingers crossed(well, as far as i can  ) that this ans it's working. Recent bloods showed a drop in my crp levels. Of course everyone is different. I've been through times when it seemed as if things were never going to improve, but thankfully they have and when I'm going through a good patch, I forget how bad it's been. I still struggle to come to terms with the fact that I have RA but am gradually learning how to manage it and look after myself rather than try to carry on regardless. I'm determined not to let it get the better of me. I realise that I have been fortunate so far. The support I've had from the forum has been fantastic- love, care, and good laugh. There are some truly inspirational people. I hope that things improve for you soon. Take care- and keep posting Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Suzanne, Welcome to the forum, you are definitely not alone and it is hard to come to terms with RA especially when you are in pain all the time, but it sounds like you have a good team and its great that they are seeing you so soon. I'm sure they will be able to come up with something that helps. As others have said we all respond to different things and there will be something out there that you can try and hopefully gives you some relief. I was diagnosed almost three years ago and was aghast at the amount of tablets to take, but you soon get used to it and since then I've been on many different things. I'm just pleased when I do get a good few days with the joints and try make the most of them - usually end up paying for it a couple of days later, but at least I've enjoyed myself in the meantime. I'm not very good ,despite reading so much advice, on pacing myself, but then we all cope in different ways. Anyway hoping thing improve for you. With all best wishes Sheila
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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just wanted to say thank you for the lovely welcome and all the info ... all gratefully received.
this is definately a learning curve and so glad i joined the Forum.
wishing you all a lovely weekend and i'll let you know what the Consultant says on Monday.
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Suzanne, Just wanted to say welcome to the forum, and to wish you good luck for your appointment on Monday. I`m Kathleen, age 59, and live in Durham. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Dear Suzanne, Hi there and welcome to the Forum.
My name is Fiona, I'm 53 and have had R.A since I was 38.
I hope that you will find the correct treatment for you soon.
You will find many supportive friends on here.
I get down hearted sometimes too when the R.A flares.
But allways, on the Forum you will get support.
Best wishes,
Fiona
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Suzanne 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 trying to get a recent flare under control after cessation of methotrexate (due to neutropenia) and temporary stoppage of Enbrel for an op. All good fun isn't it ... ?!! 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. Three months is still relatively early days for the methotrexate; it's one of those drugs that require to be built up in the system for best effect. Sometimes that can take a while to do but it could be 15mg isn't quite a strong enough dose and an increase to 20mg may make all the difference. No doubt the medics will have their own ideas so good news that you will be seeing them tomorrow, hope it goes well. Methotrexate has long been regarded as the gold standard drug in the treatment of RA so don't give up hope yet! I was on it for the best part of 10 years before experiencing problems and it worked well. There are plenty of drugs out there though and it will be a case of finding the one(s) that is/are right for you. We are all so different! I'm sorry the diagnosis of RA has stressed you but with the right medication you will feel very different so do bear with it, not that you have much choice really  !! Look forward to getting to know you better Suzanne, do keep posting! Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Suzanne.
I know exactly how you feel, I have terrible pain in my shoulders too, I had an operation on my left one in July but it hasnt helped at all. Would love to get a good nights sleep! I hope you get some satisfaction from the hospital today. Thinking of you x
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