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Getting the most out of Rheumie apptmt Options
Alison-RH
#1 Posted : Saturday, April 03, 2010 9:10:16 PM Quote
Rank: Advanced Member

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Joined: 12/5/2009
Posts: 43
Hello Everyone,

Many thanks for your advice and suggestions regarding night sweats and copper bracelets, but now I've got another question - hope you don't mind! I'm seeing my rheumie next month - having finally getting results back from MRI scan on my hand confirming RA. I've been on MTX since Aug 09 and it's working to a degree but the pains are spreading around my body - it started in knees, then hips and MTX helped a little with this. Now in my elbows, wrists, fingers, toes and occasionally shoulders. At my last appointment, my rheumie told me that I wasn't really bad enough for anti tnf's. I've tried sulphasalazine and failed on that. Then she added leflunomide to the mtx but I couldn't tolerate that either. I can't tolerate steroids, so just on mtx, diclofenac, nortryptaline, tramadol and lidocaine patches. Can you offer any advice as to how to get the most out of my next appointment - I know I'm not as bad as some people with RA but it has significantly reduced my quality of life and I'm still in pain everyday. I'm only 40 and would love to be able to do more with my life than I'm able to do right now. I'm pretty positive but would like to know what my rights are regarding asking for anti-tnf's? Does anyone know? Sorry for rambling on but would really appreciate some help as I'm a bit nervous about seeing rheumie again! Thank you, Happy Easter to you all.... Allison xBigGrin
lizziemouse
#2 Posted : Sunday, April 04, 2010 12:47:31 AM Quote
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Joined: 12/3/2009
Posts: 872
Happy Easter Alison,
You not on your own - Im only 40 too (well not quite but nearly... Scared )

& Im sure someone will be along soon with much better advice than i can give about anti- tnfs

For appointment I would advise making a list - its so easy to forget all u wanted to say and helps to make the most of those precious minutes,

Take care, enjoy your Easter - perhaps spread chocs out - I used to flare up every easter til i realised chocolate is one of my triggers for a flare up!

Lots of love ~ Liz xx
Julia17
#3 Posted : Sunday, April 04, 2010 9:00:53 AM Quote
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Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Hi Liz

Sorry to hear how things are for you right now, you are very positive and like Liz you will get all the best advice from our friends on here what would we do without them ?

Happy Easter, love Julia xx
Julia17
#4 Posted : Sunday, April 04, 2010 9:02:43 AM Quote
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Joined: 2/18/2010
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Location: farningham kent
Sorry Alison, got your name wrong - perhaps better go back to bed !!
Julia xx
lizziemouse
#5 Posted : Sunday, April 04, 2010 9:27:34 AM Quote
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Posts: 872
lol Julia sounds good excues to back have a lie in! sounds like a good idea!
Happy Easter both!! xxxxx
lyn2
#6 Posted : Tuesday, April 06, 2010 4:44:08 PM Quote
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Joined: 12/10/2009
Posts: 653
Location: Notts
I'm sorry your RA seems to be getting worse. I would have thought in that case you would be eligible for anti-tnfs. You would be able to find out if you were given a DAS assessment. Do you think you could possibly ask your rheumy consultant/nurse if you could have one? This is the test that we all have to go through to see if we are eligible for anti-tnfs.

Lyn
joeyvt
#7 Posted : Tuesday, April 06, 2010 6:02:12 PM Quote
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Joined: 1/7/2010
Posts: 441
Location: Bristol
Hi Allison,

Also very very nearly forty Tongue and I've decided that's far too young to be plagued with RA so I've written to those in the know and mentioned they've made a mistake. Still waiting for the confirmation that it'll be taken away Smile

I would have thought that you'd qualify for at least an assessment for Anti-TNF's seeing as you meet the criteria of 1) having active RA and 2) previously failed on at least 2 DMARDS.

At your next rheummy appointment, I'd ask for an assessment to be made so you can be considered for Anti-TNF's and be prepared to lay it on thick about how the RA as it currently stands is affecting your ability to function. I really believe you ought to at least get to have a shot at it.

When is your next appointment?

Joanna
amanda_lewin
#8 Posted : Tuesday, April 06, 2010 11:29:54 PM Quote
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Joined: 12/3/2009
Posts: 1,582
Location: Oxfordshire
Poor you! I know how you feel too, life can feel very unjust at times.

Not too sure about the anti-tnfs but usually if one has failed on two or more DMARDs this should put you in good stead for trying them.

Love,

Amanda
monty
#9 Posted : Tuesday, April 06, 2010 11:53:05 PM Quote
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Joined: 12/5/2009
Posts: 216
Location: Leicester, UK
Hi Alison,

So sorry you are having a rough time. That's the problem with Arthur, it takes so long to get meds sorted and we never really know how/what to ask for. NRAS do a really useful booklet about getting the most from your consultations. Why not give the Helpline a call and ask them for a copy ? You can also talk to someone there who will probably be able to give you the information you need.

Warmest wishes, Ann
"I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
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