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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi - I have been all of a tizzy today and the more I have googled, the worse I become!
5 weeks ago, my rheumy said that MTX was not working as ESR was 90 odd and lots of painful, swollen joints in hands, feet and shoulder. She said before she would decide on another drug she wanted more bloods taken including antibodies(?) The first set was wrongly taken so I had to repeat. I'm also on 2 weekly monitoring for the MTX.
The rheumy said if I had heard nothing after 2 weeks, to chase her up. I rang the nurse 3 weeks after the 2nd tests, who said the tests can take weeks, and suggested I rang the rheumy's secretary at Halton Hospital. The sec. sent me straight back to the rh nurse but nobody has replied to the messages I left.
Anyway, today I saw GP to get repeats of prescriptions. He had all the test results there, including the last 2 ESR which are 115 now, higher than they have ever been. Also, CRP has always been 10 and is now 16. The GP said it seems that the disease control is getting worse, backed up by pain increase, and that I need to get back on to rh nurse! I will try again tomorrow.
Then I got all worried that I might have high blood levels for some other reason, googled and read that high CRP is linked to heart attacks and cancer. Don't know why they take all these blood tests if no-one ever does anything with the results. Any advice on this please? Maybe I'm worrying unnecessarily but I just don't know! Thanks, Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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OK - STOP worrying!!! You've got RA and these levels fluctuate up and down. They really can and often do vary from week to week - sometmes very high and sometimes low. There doesn't seem to be any rhyme or reason! I've had some very wierd results over the last few years and panicked myself into a flare on the odd occasion  A few months ago my results came back with four different "osis" on the end of them and I googled everything and nearly gave myself a heart-attack. When I asked the GP he said it was because the blood had taken so long to draw it had become contaminated - and I had fretted and worried for days! Please, please, be assured that the way you are feeling is quite normal. We've all been there and imagined we have all sorts of wierd and wonderful things wrong with us. I'm positive this is all down to the RA and once your drugs have been adjusted, things will be back to normal. Take care Lots of love Jeanxxxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
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Hi
as Jean has said you have RA
when I first had it my esr was 501
it took a while for the RA doctor to sort out what drugs would work for me which he did
my advice to you is dont google as Jean said what you read on there makes you more scared
just talk to us on here
please try not to worry to much
take care
Mary L
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Dear Alisa
I titaly can relate how you feel, since I have been diagnosed I would worry about any little thing and it really doesnt help. I am also the same with respect of thinking I was going to die of cancer and a heart failure because I was anxious about what lay ahead and my mortality. Where as before I had RA I was so blissfully unaware. However I was very unhappy with teh first hospital I attended which added to my anxities as I thought I wasnt getting teh correct care.and I see you have been given the run around. Unfortuantely hospital priorities are not the same as ours as their resources can be stretched.
Mari
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hello
that esr is not pretty but it can be up there with infections and all kinds of reasons. Over 100 is never much fun in my experience- you must be feeling it up there xx ((hugs))
the crp is high but NO WHERE NEAR as high as it can be. My RA is responding really well to the Cimzia and has come down from in the 90s (horrendous) to 40s. Serious infections push crp's to 400+ along with certain cancers. Now I know i have severe ra and 40s is the best mine has been for a good few yrs now. I have had NO HEART ATTACKS and am very much alive- OK?!
the anti ccp test and anti- bodies will be to see if there is another autoimmune thing going on (ie not RA at all but something like lupus) or to check that you havent got an infection.
Keep ringing them up for the result.
In the meantime, go to your gp and ask for a depomedrome injection in your bottom- get the biggest dose they will give you (they might need to ring rheumatology for this) and you need an urgent drug review.
RA goes in jumps and starts, it is not a smooth trajectory. Overdoing things and stress can trigger this sort of acceleration (i know)- but hopefully it will settle quickly. SOmehow things never are quite the same after in my experience.
Love and gentle (oh so gentle) hugs
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Jean, Mary, Mari, Jenni - thankyou so much for the reassurance. I feel embarrassed now for getting in such a tizz!  I can't even begin to imagine what an ESR of 501 feels like! I rang the rheumy nurse today and got the answer machine, as ever! Hope she rings me back as GP said he didn't want to give me the steroids suggested in the latest letter until I had had meds reviewed. So I'm stuck for now. I've got lots of finishing off tasks to do for school but my fingers do not want to flick through coursework, exam papers etc and write reports! Thanks again for the reality check and hope you are all enjoying the slightly cooler weather! XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Oh poor you Ailsa!
I know exactly how you're feeling and it isn't a nice place to be. BUT RA does fluctuate so much as do bloods- they can literally change by the hour.
You sound like you do need a large dose of steroid to help bring down the inflammation and bring you relief. It can be administered by the GP/nurse and will help- for most people it is like a little miracle.
Please try not to worry, I know this is oh so easy to say and so so much harder to do, but as the old quote says' Worry is like a rocking chair- it gives you something to do but doesn't get you anywhere'!
Much love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi again
do ring the nurse back, the hospital should have an emergency clinic. they should not be leaving you like this until drug review....
Love Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Agree with Jenni - keep pestering them.
Love Jeanxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Thanks Jenni - I got a calll back from the nurse who had emailed the consultant. I went in yesterday and had injection - 3 little bottles this time, so she said I should be good for about 6 weeks now!
Amanda - I like the quote about worry. It's very true. And one thing I am not short of in life is something to do!!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Lovely to hear you sounding more positive, Ailsa. Enjoy your pain free weekend!
Lots of love
Jeanxxx
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Rank: Advanced Member
Groups: Registered
Joined: 6/30/2010
Posts: 61
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I think it is unfair for the GP to leave you with the task of chasing up the nurse. Ring him/her again and politely say you have not been successful in getting through, would s/he please help you get in touch with the hospital.
On the other hand, I must say I am going through a similar process to you. I have been reading up on everything I can think of which might help me take control of this illness. Right now, I am navigating this site instead of doing my paperwork!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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so good hear you got the injection no way be left till med review they did to me one and i didnt push emm,not that we should have to. and i agree re worrying easy say dont than do. hugs take care. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
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Hi
my esr is okish now
but when it was that high I asked the doctor what it was he said "a pair of jeans"
well I laughed so much he was a sod of a doctor he always made me laugh
hope you feel better soon
I was always wound up too when I first had RA it is normal
take care
Mary L
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Ailsa, How are you today after your injection, has it made a big difference to you. Hope you have had a good rest and feel so much brighter today. Sending positive vibes Lorna x 
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