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Rank: Newbie
Groups: Registered
Joined: 9/27/2010
Posts: 2
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Hi,
Am new to the site. Been suffering with RA for about 18 months and have tried nearly all anti-inflammatories, steroids and several pain killers! At the moment am on methotrexate, amytriptiline, tramadol, diclofenac and started on a clinical trial drug in May which I inject once a month. No major improvements so far, although I am more mobile than I was and less swollen, but the pains in my feet, ankles and wrists are pretty bad and I can't straighten one of my arms cos the elbow is kind of stuck! Can't be on my feet standing still for longer than about 15 minutes and can't walk any kind of distance. Bit depressing cos I used to be so active and walk everywhere, now stuck at home a lot eating chocolate, which is nice! But am piling on the pounds! Had a really really bad winter last year, was off work from November and was pretty much housebound until end of march, could hardly move at all, so dreading this winter. I'm 38 and got an active 5 year old son, so its been tricky trying to look after him and keep him happy, for ages I couldn't even take him to school and pick him up as I was so bad. Even when I'm really stiff and exhausted I feel better if I can get him up and dressed and to school, even if thats all I do for the day! Just started back at work just doing sessional now instead of regular hours, which at the moment is just an afternoon a week. My doctor has advised applying for DLA, have just down loaded the form but its a bit of a monster! Has anyone else applied? Anyway, its nice to be part of an online community, I know its horrible that we all have this, but it feels better knowing that we're not alone. xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Welcome Catey, Welcome to the forum but sorry to hear you have RA. It is a dreadful thing but now you on hear you will get lots of support and information about most things. The NRAS helpline is also very good and will answer queries and point you in the right direction. You are a lot of medicine and I hope you have a good RA nurse and that they keeping an eye on you. I am Rose aged 56 from Somerset. I was diagnosed nearly 2 yrs ago. Failed on mtx, suphas,and leflun. See specialist next wk so hopefully I will be put on another drug. My ankles and feet and wrists and fingers are all dreadful, as well as back elbow and shoulders. I am on amtrip, celecoxib and paracetamol for my RA so need another DMARD or TNF now. I have completed last week the DLA form - gosh yes it is very lengthy. I have sent it off but I don't hold up a lot of hope. They seem to reject a lot of people. Go for it . You don't known till you have tried. So nothing to loose. Keep posting Rose 
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Dea Catey
Welcome to the forum, although ti's a shame that something awful like RA brings us together. There's lots of help, tlc and advice on here.
I'm 53, was diagnosed in 2008 after almost a year for pain in various places. At first I was in a lot of pain- like you I couldn't do much for any length of time. I was on sulfasalazine at first- that worked for about 18 months, now methotrexate has been added to the mix. I was also on diclofenac but earlier this year had a bad flare so was put on meloxicam (it was amusing to find that my pet rabbit was on the animal dosage of the same drug for inflammation!!)
I really feel for you having to cope with a little one as well. Hopefully you iwill be able to get some help and support. There are a few mums on here who will be able to give you advice.
Look after yourself
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Catey,
welcome to the Forum.
sorry to hear you are suffering at the moment it's really fatiguing i know let alone having to look after a little one.
i also have Osteo Arthritis in both knee's which means i can't walk far now, manage to do my shopping as long as i can park near although don't do a full trolley load go mid week then i go with Hubby one day over the weekend to get the bulky items.
i was diagnosed 4 months ago but not under control yet ... have just had my Methotrexate increased from 15mg to 20mg but will have to wait a few weeks to see if this works.
you will get a wealth of information and support on the Forum i am so glad i joined.
i'm 57 married with a 28 year old Daughter who's now flown the nest.
hope to hear more from you soon,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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hi catey, welcome to this amazing site, always get an honest and first hand reply and we are all in same boat,hope you enjoy and good luck, im 53 had ra now 3yrs and still getting meds sorted,problem that gets to me is staying awake let alone running after a wee person
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Catey, I'm Lorna I have had RA for 3 years now, I was very ill in the beginning, like you I had severe problems with my right arm I pretty much lost the use of it for sometime. Having been on the triple therapy I am so much better now and I keep really well. I am 51 and I am married to Ken for 28 years and we have 3 lovely daughters. The forum is a good place to come on for a chat or for information, we have all been there and know the difficulties. Glad you have found us, take care Lorna
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Catey, welcome to the club. Sorry to hear you are still in pain despite the medication.
I'm Sheila in my fifties and have had RA 3 years, am currently on Methrotrexate, Diclofenac, Prednisolone, and Rituximab with the usual that goes along with these.
I think the biggest problem is that most of the drugs they try take so long to work, as you've already found out. But I have found that once the team know its not working they are so good in moving you something else therefore it does give you hope that there is something out there that can help, I live in that hope and do sometimes have better times.
I'm sorry but I can't help with the forms for your DLA application, I had a look at them last year and was so low and seemed to be in bed all the time that it just seemed like a monster to fill in, so didn't attempt it, but go for it you've nothing to lose.
Hoping things improve for you soon.
Best wishes
Sheila
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Catey 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. Acceptance of any chronic illness is difficult and I'm sure each of us has felt as you do now. RA is a pain, it can take over and change our lives completely, but through it all we are still the same people. It takes time to adapt and with a young family it can be very difficult, been there, done that, four times over. so completely understand how you must be feeling! It sounds as though a review of your medication may be in order. When is your next appointment in Rheumatology? I applied for and received DLA but that was some time ago and the application of the rules have changed drastically in recent years. NRAS do have a booklet about applying for DLA, do give them a call and they will post a copy out to you. Here's the link. Also the Citizens Advice Bureau may be able to help. Filling in the form is key so do take some advice! Hope things start to improve soon. Do keep posting Catey Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 176
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Hi Catey, and welcome to this elite group!
The first time I applied for DLA I was rejected, and was to exhausted to fight back. After 6 months, I applied again, this time with help (from Help the Aged) and would go with what others have said, and get help from the CAB. Also, copy the form before it is sent back. Mine was granted for 2 years, and I have just done the whole thing again. I find it quite depressing to do. We are mostly trying to get the best out of life with RA, and focuusing on what you can't do it not healthy for the mind.
I'm sure that all the effort spent getting your five year old ready in the morning is really good for you - hang the rest of the day!
Take care of yourself.
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hello Catey
A very warm welcome to the forum, and so pleased that you are here. As we all say it is a great support network and all understand what each other is going through. I am sorry that you are going through so much at the moment, and you are doing so well having a young son to look after too ! Are you due to see your consultant in the near future as you have been on the course of treatment since May and still suffering alot ? I am no expert having only been diagnosed about a year ago after six months in the wilderness so to speak. I am waiting to go onto infliximab an anti tnf as leflunomide together with an assortment of other bits and pieces haven t worked. Like we say the biggest problem usually is finding the right course of treatment, we are all so different.
Look forward to hearing from you, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Catey
I am Jenni, 34, married with 3 children- 15, 13 and 2. My youngest will be 3 at the end of october. She was one of the first forum babies!
I have had RA for a long time now (since I was 20) and lucky me, was one of the 3% who got gifted with severe disease! Joy! lol....
I think it can be tempting to think of the "end" of things when you get diagnosed, it is really really hard to get your head around things at the start, let alone physically cope with children and life. I can tell you that despite having severe RA I have done a lot of life, only stopped earning as a teacher 5 yrs ago and done a pretty good job of bringing up my 3 children- getting married and I am about to launch into a social enterprise iniative.
Always found the doing stuff/ resting balance very tough but you really should try and get an appointment with an occupational therapist who can spend time going through "energy conservation" with you and give some practical ideas on joint conservation too.
I do get DLA, definately apply and remember to get the CAB to help or an advocacy grp as they know the phrases to use to make the DLA people understand and give you the money you are entitled to. I know you a perfectly intelligent young woman but dont miss out on this (I did and had to do all sorts of appeals).
I am a phone volunteer, you can always ask to speak to me through the NRAS people if you like.
Jenni
PS What drug are you trying?how to be a velvet bulldoser
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Rank: Newbie
Groups: Registered
Joined: 9/27/2010
Posts: 2
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Hello, and thanks for all the warm welcome messages. It definitely makes it a lot more bearable know that there is other people out there going through the same stuff and that we are all here to support eachother.
I still haven't got around to filling in the DLA form, when ever I sit down to make a start I just end up feeling overwhelmed by the whole thing. Really need to get on with it though, I know there is a chance it'll get rejected, but its definitely worth a try.
The clinical trial drug I'm taking is called Gollimumab (its a type of anti TNF). The senior Rhuematologist from the hospital I go to is on the panel for NICE and is involved in writing the recommendation for it to be made available on the NHS to sufferers in the UK. It feels like I'm doing something worthwhile being one of the volunteers doing the trial. I would say it has helped a bit so far in that I don't seem to be quite so stiff or swollen, but my consultant is not completely happy with the progress made so far as I'm still in quite a lot of pain and limited with what I can do. I have to carry on trying it in the injection once a month form until the end of the year and then have 2 months of it being drip fed over a 2-3 hours period once a week and then go back to the injection to see if that makes a difference. I'll keep you posted on that one! At the end of the day I'm still on the methotrexate once a week and anti-inflammatories and pain killers every day. Costing a fortune in prescriptions! So I guess its difficult to see what drug is having what effect, but i suppose the hospital must now what they're doing. They're taking blood tests once a month, so must be judging it from that along with the questionnaires I have to fill in.
well, I hope everyone is having a good week while the weather is still nice (it is where I am anyway!).
Thanks again for all the welcome messages, really appreciated. xxxx
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Catey, You said the prescriptions are costing a fortune. Do you not get the four month one or the yearly one, it is so much cheaper. The four month one is the one I get, it costs £8 and you get as many scrips as you need in that 4 month time. Definitely works out cheaper when you are on lots of different meds. Take care Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Catey
Sorry to hear you are struggling . Why is it costing you so much in prescriptions? Hasn't your GP or pharmasist suggested you get the prepaid card. it is just over £100 per year - I pay monthly by direct debit at just over £10 per month and I think I only pay for 10 months a year. There is no way I could afford the multiple prescriptions otherwise.
Take care
Sue
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi CAtey
Good luck with the trial drug sounds like may be good for you - perhaps some of us
soon as well.
Yes definately get a pre payment . I do the same as Sue and have done now for
the 2 years since I started all these drugs. I got the form and sent it off from my
chemist. £10 pm on dd.
Good luck
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Catey
Welcome to the forum.
I use the pre-payment method, but I have my own little system. I have posted this before but I will do, it again for all new members and incase anyone else missed it.
I only buy three, three month ones a year.
I actually did this yesterday. When one expires I wait until the time that I collect my monthly meds from the chemist before I buy another one. I go to Boots, they do all of the ordering and collecting the prescription from the doctors for me....... So yesterday, when my prescription was due to be picked up I paid for a three month pre payment card whilst I was there. It cost me £28.25. So that was my October meds. November and December ones will be collected when due. I will make sure that my January meds will be ordered to be collected just before my card expires. They are good at the chemist and I have not had any problems ordering them to be collected a few days early.............Thats four lots on a three month card..........Simples!!!!! I will then buy my next card when my February ones are due and start again.
If you are collecting all of your meds on a monthly basis there isn't any problem with this. It does save a little on buying the yearly one. I do think it's wrong that we have to pay for our prescriptions, some illness you don't have to pay for any medicines, even ones thats not for the illness that makes you exempt from paying.
Paula x x
Lorna.........Do you know something that we don't know? A four month card for £8......I'm wondering if you live in Scotland, I think that prescription fees are less there. I know that all prescriptions are free in Wales.
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