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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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I noticed your post under PAIN RELIEF' so I have started a new post
for you. . . .
A big welcome to you from me. You will find great help, friends and info
here never be afraid to ask.
I am Rose from Somerset aged 56 diagnosed 2 years ago unfortunately
failed 3 DMARDS but now waiting to go on TNF - fingers crossed should be
around Christmas time, my next appointm is Dec 15th
Welcome and 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 Rose
Good to know that you have your next appt on the 15th, I was wondering if you had heard. Really hope all goes well for you, I have just started infliximab and fingers crossed all seems to be going in the right direction.
Look forward to hearing from you
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 Julia, How it going with inflix. Is this your first TNF treatment. How is it?
What side effects ? Good luck Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hello Julia
Hope things going well on infliximab. Starting anti tnf in new year and think will prob opt for inflix let us know how you get on! Good luck luv Ceri xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Rose and Ceri
Thank you for your messages. It is my first anti- tnf, as leflunomide/ hydroxy didn t work as I was having very high esr and crp scores. For sometime before starting infliximab, even with quite high dosage of steroid, I
was very poorly with extremely painful shoulders joints causing pain all the way down to my hands, I was constantly bathing my arms in hot water to help with the pain which really helped. Anyway on the Monday, day before I went for my first infusion the pain in my shoulders etc had completely subsided and left just sore and achy - I just couldn t believe it after 18 months. As yet it hasn t returned, so I m not sure how much the infliximab has kicked in, the aching etc seems to be getting less so feel it is working. ! I have recently seen my consultant and he has no explanation and like it is often said on here, RA is so unpredictable just so grateful for the respite.The day after the infusion I do feel a off colour like mild flu and perhaps bit more tired but nothing much. I will keep you posted on how things go.
Wishing you both all the best with your treatments in the new year, be good to hear how you get on.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hi everyone It's so lovely to receive your warm welcomes. I have had to leave off the Diclofenac because it is upsetting my tummy and making me light headed and dizzy to the point where I can't think straight and have trouble driving. I have been taking this for 2 years for Osteoarthritis! But they now seem to think that I had RA all along?? I have co-dydramol for pain relief, but i am worried about the possibility of addiction, so am switching to only those at night and taking paracetamol in the day, as per my GP recommendations. I have only been posting on here a couple of days and already feel so much more positive. Thanks to you all. I am off tonight to Plymouth to see the Squeeze and with my new pain relief regime hope to enjoy. I always hate getting up after sitting down for a while because I hobble about like a little old lady for the first hour or so! In fact when I first stand up I can't move my feet all and have to bend and stretch my calves before I can walk properly. So here goes... From what I can gather I shall start on the Methotrexate one I have seen the Rummy nurse on 16th December. So things are looking positive for Christmas, at last! Good advice is best followed by the art of listening
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Rank: Advanced Member Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hi everyone It's so lovely to receive your warm welcomes. I have had to leave off the Diclofenac because it is upsetting my tummy and making me light headed and dizzy to the point where I can't think straight and have trouble driving. I have been taking this for 2 years for Osteoarthritis! But they now seem to think that I had RA all along?? I have co-dydramol for pain relief, but i am worried about the possibility of addiction, so am switching to only those at night and taking paracetamol in the day, as per my GP recommendations. I have only been posting on here a couple of days and already feel so much more positive. Thanks to you all. I am off tonight to Plymouth to see the Squeeze and with my new pain relief regime hope to enjoy. I always hate getting up after sitting down for a while because I hobble about like a little old lady for the first hour or so! In fact when I first stand up I can't move my feet all and have to bend and stretch my calves before I can walk properly. So here goes... From what I can gather I shall start on the Methotrexate one I have seen the Rummy nurse on 16th December. So things are looking positive for Christmas, at last! Good advice is best followed by the art of listening
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Egg Lady, What's your name. I'm Lorna, I am married to Ken and have 3 daughters the youngest who is 16. Sorry you have RA but you have found us on the forum and we are always here for a chat. I have had RA for 3 years and was very poorly at the start, but having been on the triple therapy I keep so much better now, as long as I do not overdo things. I was on Diclofenic years ago for pain not for RA but I had to stop it as it had me doubled up with stomach pain. Hope you get on well with your Rhummy on the 16th December, I go the same day to see mine. Once you start the MTX you will be much better. It's the gold standard for pain, but you have to give it time to kick in, around 7 to 12 weeks you should see a difference. Try to keep a diary so you see the improvements. It does help and be positive this will also make a difference. Take care Lorna 
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Egg Lady  Egg Lady???  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 16. 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 on top of things again after two lots of knee aspirations and joint injections in 7 weeks. But heyho... I currently do voluntary work with the PTA at my son's school to keep myself occupied (this will end with my resignation on Wednesday!) 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. I shall have to look for something else to occupy my time ... but not until after a well earned rest! 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 but I'm sure once you are on suitable medication things will improve for you. I took Methotrexate, in combination with an anti-tnf drug, for many years and it made a huge difference to everyday life. It will, as Lorna says, take time to kick in, but this is true of most RA meds. Be patient, be positive and pace yourself! Hope things start to improve soon. Do keep posting Mrs Egg  Hope you enjoy your night on the town!!  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Egg Lady, Welcome to the forum, where we all try to help each other with the problems caused by the RA beast. I`m Kathleen, 60 later this month,and I live in Durham with my husband of almost 39 years. We have two sons, and two little grandsons. Keep posting, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Welcome from me too- several members on here were misdagnosed with OA. I hope you have found the information on NRAS helpful. Keep ontop of the pain- take regular paracetamol is a good idea to keep the pain under wraps. Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Egg Lady,
Welcome, I'm Sara, 44 on MTX for 4 weeks now, it makes me feel dreadful but that should subside I'm told so hang on in there, I'm trying to keep hold of the idea that this is the worst its going to get but that's a bit tricky sometimes. You probably nearly passed my house on the way to Plymouth, hope you enjoyed the night out. In spite of everything I managed to see the Damned in Saltash in the summer and as long as I stayed on my feet I was OK, I suffered for it the next day but hey life's for living. I also spoke to a friend yesterday who's a farmer, been on MTX for 3 years and manages to carry on farming, he recommends a good night out on the beer once a week for pain relief! Not sure about that one he's a bit of a joker. Hope it goes well for you
Sara
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Rank: Advanced Member Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hi Lorna Lynn Kathleen Sara and anyone else I have missed (bit like the Baftas thank you speech this) Thanks for you advise and help. Here I am been up since 4.30 because I forgot to take the co-dydramol (would you believe it!) before bed. Had an absolutely brilliant time on Saturday except it was a sit down job and my knees were cramped up and fot a bit tricky but the entertainment overcame everything, they were fantastic, as were the Lightening Seeds as support.  Having massaged my hands back to life thought I would leave a little message before I head off back to bed. Had a hell of a weekend on the farm, as the feed bin to one of the laying houses had blocked up and we spent most of sunday unblocking it! By the way real name is Julie = don't know why I chose Egg Lady... probably because I spend most of my days wallowing in eggs!!   And Sarah if I had known I was passing I could have waved. I love live music. I tried the beer pain relief (as I am a fan of real ale) but as I also have an irritable bladder I spend most of the time on the toilet afterwards!!! Thanks you guys I really appreciate all your efforts and the time you have given to reply to me. I LOVE YOU ALL! (I took that from a famous Oscar speech by some up her own bum actress!) Speak soon x Ju Good advice is best followed by the art of listening
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Rank: Advanced Member Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hi Jenni too oh and Rose from before.. sorry missed you out.. thanks  Good advice is best followed by the art of listening
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Ju
Welcome to the forum. Once the MTX kicks in I'm sure you will feel alot happier. Good luck on the 16th.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Julie,
welcome to the Forum where you will get a wealth of support and information.
i'm currently on 20mg Methotrexate and start Hydroxy this week as the Methotrexate hasn't worked for me, well brought my CRP down but not enough.
i hope the Methotrexate works for you ... you just have to patient and give it about 12 weeks.
it is a shock when diagnosed there's no denying it ... still haven't fully come to terms with it myself having been diagnosed in June.
keep posting and good luck.
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hi everyone, Spurred on by all your comments and the wealth of experiences I have read about I contact my rhummy nurse who has brought my appointment forward from the 16th Dec to this Thursday 9th so that we can discuss medication. Having given up the diclofenac I am relying on pain relief which is only just holding off major pain but the stiffness is awful. Without this website I would have struggled on until the 16th, although goodness knows how. Thanks everyone. Good advice is best followed by the art of listening
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Good luck with your appointment
let us know how you get on
Rose
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Rank: Advanced Member Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Thanks Rose Julie (Egg Lady) [ Good advice is best followed by the art of listening
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Rank: Advanced Member Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hi its me Julie Just thought I would let you know what's been happening. I eventually got through to the rheummy nurse and she saw me last Thursday. Triple dose of steriods in the botty. By Saturday morning, I couldn't believe it. I woke up after the first full nights sleep since 1900 and frozen to death and i could move my fingers and wrists and elbows were pain free and my knees didn't collapse in my rush to the toilet! I couldn,t believe how quickly I felt so much better. I was so relieved. I should get my go ahead for the metho within the next few days now before the steriod injection wears off. I am being put on 15 mg at first increasing to 25 (I think) or 20 over three weeks. Is this normal? I have been dashing (yes dashing, well almost) about doing stuff I have been meaning to do etc etc whilst it lasts.. No pain killers either, so hopefully I will be able to get ready for Christmas do the shopping and wrapping and cooking with a little help from the family. If I hadn't have found this forum I will still be where I was a couple of weeks ago, miserable and in pain, sleepless night and just waiting for the appointment on 16th. It wa so good to see the Rheummy nurse to talk to someone who really understood my condition, how I felt. And I found out she buys our eggs!! thanks to everyone yet again... but I really mean it xx Good advice is best followed by the art of listening
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