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Rank: Advanced Member  Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Morning all, I am almost definitely ever so slightly, feeling a itsy bitsy bit better..... it comes and goes, but the fingers and wrist swelling has reduced and stiffness is improving... but I do feel very very tired but (lots of buts) I am just beginning to learn to live with it. I know I probably have a long way to go and everyone recognises the ups and downs... I think by the time the next dose of MTX is due I shall probably be down again but...... Best advice - the piece on Flare Ups posted by Jenni made me look at myself and recognise what is going on instead of trying to carry on in all the fog and confusion. Best support - everyone who has replied to my postings Hey ho it's off to work we go.... Have good day everyone - Julie x 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 Julie,
Glad you are feeling slightly better, enjoy the good days.
Know exactly where you are coming from and yes I to am beginning to live with it but there are some days when I'm so down and fed up with the pain and tiredness and feel I'm back to square one again, but lately I've had more ups than downs.
I was diagnosed last May and still have a way to go getting my head around it, but sharing my pain and thoughts on here helps a lot.
Anne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Julie Great to hear that there is some progress and you feel a little bit better. It takes time to get to know your body and its response to RA, it does come, with time, so do be patient. Remember not to over do things when you are feeling better ... the 'wellness' can quickly disappear! You might be interested to read the article on patient.co.uk which gives lots of information about how our joints affected and lots of other useful bits! Good luck, hope things continue well Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hey Julie! What good news
Enjoy the positiveness of the moment and lets hope everything keeps going in the right direction
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Julie,
glad to hear things are improving slightly for you.
the full realisation of this disease has hit me this week ... as i have to face changing Drugs as unfortunately the Methotrexate and Hydroxy haven't worked for me, been on Methotrexate since last June.
i think tiredness is part and parcel of this condition.
hope things improve for you week by week,
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 Thanks everyone It sure is a roller coaster of a ride this malarky. Today mainly..... la la You don't know how you are going to feel when you wake up. Had a banging headache this morning and had to ring NHS direct to try and find out what other painkiller I could take. By the time a nurse rang me, it had gone - almost - and apparently there was nothing I could take as I am on MTX (can't take Ibuprofen) and Co-dydramol (can't take paracetamol! So I shall have ring my rhuemmy nurse or the doctor in the morning. So it goes on. What's that phrase you keep hearing - "Steep learning curve"! Keep smiling and take care Julie x Good advice is best followed by the art of listening
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Julie Phoning Rheumatology may be the way forward for advice but your pharmacist should be able to help with what you can or can't take with methotrexate. Paracetamol (both as cocodamol/codydramol) can be safely taken with methotrexate, I have been on constant prescription for the two for about 7 years with dihidrocodeine thrown into the mix for night time! I think, often NHS Direct cover themselves and will be reluctant to give any advice where Methotrexate is concerned. Often warnings about possible interaction relate to the higher doses of Methotrexate used by cancer patients and the risk is rare with the lower doses used by RA patients. However, always best to obtain advice specific to your needs from Rheumatology. Are you already on pain relief medication for RA? This will often see off any headaches or minor aches and pains! Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I had MTX added to my meds last June and when I went to get my prescription made up the pharmacist was concerned because the computer showed up an inter reaction with my pain killers ( I take a slow release ibuprofen type drug 1600mg a day). At first she wouldn't give me the MTX, said she was going to check with the consultant if I could take them both. I had to explain that I was going to Norfolk for a break that afternoon and I needed the meds to take with me. She reluctantly gave them to me telling me to check with hospital that it was OK to take them.
I did and was told that the benefit far outweighed the risk of taking them both. This was last June and seven months down the line I am still taking them together and have had no problems, but I would still check if its OK for you.
Pleased to see that things are getting better for you RA wise.
Paula
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Rank: Advanced Member  Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Thanks Paula and Lynn One thing is predictable with this RA, nothing can be predicted! It really is a case of individuality. It was such a banging headache and it was Sunday so I rang NHS Direct rather than the local doctor who is always busy or go to A & E. I ended up taking paracetamol which later on that day NHS direct said I couldn't take. I have had a another blood test since and all is ok with that so my fear it may be raised blood pressure was disspelled. It;s also good to see there are lots of alternatives too which I have never heard of before - like to slow release Ibuprofen. I shall see my doctor. Thanks for your advice it all helps  . Good news is I feel even better limbwise today and I have to up the MTX to its max today (15mg) although originally the consultant said he was going to get me on 20 mg. So I am hopeful with the good progress on the present dose I shall stay there for a while, as I seem to be adjusting to it. Still a bit foggy memorywise but it is better. Its good to be able to talk to someone about how I feel as family all seem to be busy elsewhere and just want the old me back I think. Have a good day everyone Love Julie x Good advice is best followed by the art of listening
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Julie
Good to hear things are going in the right direction for you and the MTX is working. I am having a bit of a problem with pain control and will also ask my Dr about the slow release Ibuprofen hadn t heard of it before.
Hope all your little creatures are behaving themselves for you !
Take care, Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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 All is well on cold comfort farm, thanks Julia  But they were looking decidedly soggy this afternoon, bless... 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 Julie, Just caught up on this post, I have been unwell myself so have not been online. You do go up and down but you are responding really well on the MTX it should settle soon. Spring is on the way which will make a difference to us all, the sunshine and the lovely flowers, I do love to see the little daffodils and snowdrops and the little glory of the snow. It makes such a welcome site. Keep positive and take your time each day is different enjoy it and do only what you can manage. Glad your joints are so much better. Take care Love Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Julie
The slow release pain killer that I mentioned is called Bruffen Retard. If you read the info with them it does say take two in a morning but my consultant told me to take one in a morning and then one in the evening so I would have a constant top up of pain relief in me. He did say when I was first diagnosed with that I would eventually not need them once the disease was under control, that was in May 08 and I am still taking them. I have tried to stop them on several occasions but the pain starts to come back. I often wonder what is controlling my RA, the DMARDS or the pain killers.
I once enquired at my pharmacist about pain relief for my daughter and he explained to me that normal over the counter pain relief built up to a peak and then started to dwindle, he compared it with a labour contraction, the slow release ones that I take mean that the level of pain relief in my system stays at a consistent level.
Paula
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