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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Hello its nice to be able to communicate with other people who understand how it is to cope with RA!!!!! I was only diagnosed in 2008 and by this time I had a baby and a new right hip  from there I have had my left hip replaced in april this year and also got 'dropfoot' which is a big pain  anyhow I am in the middle of changing my meds as i have tried methatexate (cant spell) both orally and by injection and they dont like me or I dont like them!!! I am waiting to see my specialist nurse to review and change to lefludamide. I have been over 10 weeks without meds as for some reason the NHS think that a 'specialist doctor' cannot prescribe these at my appt noooooooo i must wait to see the specialist nurse to see if my 'flare ups' that i have had will reduce when I see her in 2-5 weeks time???????? I just dont understand it  Sorry for the rant but i'm sure you will all understand my  frustration.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Hi Issybee
This is simply not good enough to be left so long without meds. I was diagnosed in 2008 too and my first hospital were tight on resources and I had to wait 10 weeks before I could be given my first dmard and it turns out that it was unique to the hospital. I too had a reaction to methx and wasnt satisfied with the hospital so I moved to another hospital that the consultant directly medicates me, no delay and no wait for someone else and I am much happier. By the way my RA is controlled by hydroxychloriquine and steriods and at present its mild
In a word move if you can or kick up a fuss.
Regards
mari
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Welcome to NRAS and Forum, Sorry you not feeling good but you will get great support on this site.
It does sometimes feel you up against a closed door. I started on mtx also tried 3 times then they
stopped and changed to Leflun which also stopped due to side effects. so in 10 months I have only
been on a DMARD for 5 weeks= My Spec is on holiday so waiting for the 'call'
Keep posting
Rose x
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Thank you Mari I am going to call them tmw and see if my 'urgent' request as been applied!! I too am on hydroxychloriquine and have stayed on this but is doing nothing for the very aching joints, i am on tramadol and pregabalin for my nerve problem with my foot. ohhhhhh its so nice to be able to chat to people who 'understand'.
Hi Rose, thanks for the reply i hope you get that call too its so frustrating and of course painful and tiresome when waiting. Well I hope we both get sorted soon, I will post my update when i finally get seen!!! Lovely to talk to you both keep in touch dawn x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Dawn
Really pleased you have joined us here, you will go lots of support and good advice.
Sorry to hear you are having such a difficult time at the moment, it might be worth ringing the NRAS helpline tomorrow and hopefully they will be able to help you move forward as your present situation is totally unacceptable.
I have been having big problems getting hold of the rheumy nurse ( won t bore you with the details ) anyway I was so desperate the other day I rang the hospital s complaint dept. as I just didn t know what way to turn. She was very understanding and the next day I received a call back and now have an appointment next week !
Keep us posted Dawn.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Dawn,
Welcome to the forum!
Hope you can get your meds sorted out soon, it's not good that you are left without treatment for so long.
Looking forward to getting to know you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Dawn, Welcome to the forum - I`m glad you found us, as there is always lots of helpful info on here. Sorry you have been so long without meds - not an ideal situation, and I hope you can get an earlier appointment and get sorted out soon. Take care, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Hello thanks everyone for your replies I am going on a mission to sort my meds out I am going to call and also call the helpline number to see if they can help me too. Hope you are all well and have a really good bank holiday everyone. Once again thanks to you all who have given me some hope in sorting my meds issues out.
Best regards
Dawn x
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Dawn,
Any luck at all today ?
Hope you have good w end. x Rose
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Hello Rose, I did call the helpline as was informed to contact PALS. I left my number on their answer machine so hopefully can get the ball rolling. I have had a really bad day today :( oh well hopefully it will be sorted soon. Hope you are well :)
Have a fab wkend
Dawn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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I always find PALS to be very helpful Dawn.
They always seem able to get you in touch with the right person when necessary, so good luck , hope they can sort you out.
Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Thanks Doreen, i will hopefully get a call on tuesday. The helpline where very good as well, so it was worth my while joining and getting all this advice and being able to speak to nice supportive people.
Best Regards Dawn x
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Dawn
I hope you are a little better today.
Hopefully you will get a call on Tuesday, if you don t hear by early afternoon might be worth ringing again, you are in such a bad way this has got to be treated as urgent and really let them know how much you are suffering at the moment.
Julia xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Dawn Welcome to NRAS and the forum where you will find lots of useful information and a wealth of personal experiences. I'm Lyn, married to Mike, we have four children, Abby 22, Ian and Jake 17 and Louis 15, all in various stages of education. We live in Thornton Cleveleys (dare I say near Blackpool!) in Lancashire. I was diagnosed with sero-negative RA 22 years ago and have since then run the gamut of medication and several surgical procedures. I'm currently on Enbrel, Prednisolone, Naproxen and a bucket load of assorted painkillers! Currently recovering (although not well!) from an unsuccessful knee op. It's driving me nuts so I understand your pain! I hope you are able to get some satisfaction from Pals; I too have found them very good in the past. In the meantime frozen peas are great for reducing inflammation (15 mins an hour maximum) and heated wheat bags wonderful for aching sore joints. Then put your feet up with a brew! Let us know how you go on. Good luck, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Dawn, I'm Lorna, I have had RA for almost 3 years, it was a real nightmare in the beginning but I have been on the triple therapy and now I am much better. I am married to my husband Ken and we have 3 daughters the youngest 16 and still at school. Sorry you have RA but glad you have found us on the site, we are a friendly crowd, and there is always someone to answer your queries. How old is your baby now, are you managing to pick the baby up and things. I remember when I was ill my hands were so swollen and stiff I could not move them. I truly feel for you young mums with young children, it must be so difficult to cope at times but you just have to manage. Take care and hopefully you will get sorted out soon. They should not be keeping you waiting so long, Time is so important in the early stages. Lorna x 
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Hello Dawn, so glad you joined us on the forum.
I take Hydroxychloriquine too, for me it has kept things at bay for
about 14 years now. I would not discribe myself as pain free, but
certainly controlled to a great degree.
I hope your medication gets sorted out soon.
I will look out for your posts.
Best wishes,
Fiona
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Thanks again everyonr you are all kind and it makes you feel happy that other people understand your condtion. I am off to a wedding tmw with my other half Graham and my 3 year old Issabelle, its so good to have something exciting to look forward too. I do have a really heavy feeling today and have dragged myself up which is only a good thing sometimes. I will contact PALS again on tuesday and hopefully will hear something then.
I am so fortunate that I have found a site that is not only helpful and dedicated to people with RA and their families but also found friends who actually understand when you say you feel rubbish!!!!!
Hope everyone is having a nice weekend.
Kind regards
Dawn xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Dawn Hope you feel a little better and have a fab time at the wedding tomorrow. Take care and enjoy your family day. Fingers crossed for Tuesday, Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Dawn Enjoy the wedding with your family tomorrow Rose
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Dawn, just wanted to say hello and hope your wedding went well and wasn't too tiring for you. I was diagnosed in February and had 5 months on MTX before changing to Leflunomide last month. It seems to be working well so hopefu;;ly it will be for you too. Hope the delay is soon over and you can look forward to getting effective treatment. XX Ailsa (love your daughter's name by the way)
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