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LynW
#21 Posted : Wednesday, September 22, 2010 7:20:02 PM Quote
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Hi Suzanne

I'm really pleased you were able to make it to the meeting and found it beneficial. Also your appointment with your GP was so positive. All good news then and fingers crossed for the increase to 20mg of mtx ThumpUp

Just a point on Triple/Combi Therapy! Methotrexate is often used as the 'anchor' drug in this regime. If after some time on the higher dose of Mtx things aren't improving and the RA isn't being sufficiently well controlled an additional drug such as sulphasalazine, leflunomide, hydroxy may be added. Likewise a third drug may be added, if required later. The opposite regime applies in Lorna's area where three drugs are used at the outset and then once the RA is controlled you are weaned off them as appropriate. There is yet no evidence that either way is better for the patient. Between 30%-40% do well on methotrexate alone so let's hope this is the case for you ThumpUp

Thinking of you Suzanne. Take care

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Lorna-A
#22 Posted : Wednesday, September 22, 2010 11:11:10 PM Quote
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Hi Suzanne,

Glad you feel re-assured with your Nras visit and your chat with your doctor. It is a huge life changing situation we are all faced with now. Every good wish for a good outcome. Thinking about you Lorna x Smile
suzanne_p
#23 Posted : Thursday, October 28, 2010 4:02:15 PM Quote
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hi all,

just thought i'd put an update on here,

called into GP's for my latest blood tests and my CRP has gone from being in the 80's to 39 which i know is still high but is coming down at last.

i've been on Methotrexate since June 17th and for the past 6 weeks i've increased the dose from 15mg to 20mg. they want me to give it a good 6 weeks before reviewing. i had a Steroid injection 6 weeks ago when my Methotrexate was increased, but that didn't help me at all although i know it's in my system and would affect the reading to start with. but 6 weeks on my CRP has come down so i'm now beginning to wonder if the Drug is finally doing something. ( my ESR is still high can't remember the number cards downstairs )

i actually don't know what's the difference between CRP and ESR it was one of the questions i was going to ask at next appointment at the Hospital at the end of November..? although i know the CRP is something to do with the inflammation levels i think.

still in pain but wonder if there's a glimmer of hope on the horizon now ... i'm due blood test next Thursday so was planning to ring Rheumy Nurse after that.

my body is coping well with the increase which is also re-assuring.

wouldn't it be wonderful if this is finally kicking in !!

Suzanne x
suzanne_p
#24 Posted : Thursday, October 28, 2010 8:17:22 PM Quote
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just adding a P.S. here,

thinking about it i've only been on 20mg Methotrexate for 4 weeks ... as i had to build up to it from 15mg, i.e. 2 weeks at 17.5mg.

so might give it at two more fortnightly blood tests before i contact Rheumy Nurse ... or i could wait till i see the Consultant at the end of November which will be about the same.

sort of logging this so i can read it back and see what stages i am at.

Suzanne
LynW
#25 Posted : Thursday, October 28, 2010 9:32:01 PM Quote
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Hi Suzanne

I imagine your ESR will have gone down too, although not always the case!

CRP stands for C-Reactive protein and is a test which measures the concentration in blood serum of a special type of protein produced in the liver that is present during episodes of acute inflammation or infection. Normally there is no CRP in blood serum so anything over 10 is indicative of something going on. It is generally thought to be more reliable than the ESR.

ESR is Erythrocyte Sedimentation Rate (ESR). It is a simple test used to determine how much inflammation is in the body. An ESR test simply notes the speed at which blood cells sink to the bottom of a test tube. The faster the blood cells fall, the more inflammation is in your body. Normal ESR is between 1-7mm but this increases with age and individuals. For some 20-30mm may be quite normal. Mine is generally okay when it's around 16mm.

The other thing to factor in is that results can differ depending on whether you are Sero-Positive or Sero-negative. I am the latter and my blood results rarely show an accurate reflection of disease activity.

I feel sure the methotrexate is finally kicking in and perhaps by the end of November results will be even better. I wonder whether you are on the best medication to manage the pain though. The methotrexate will (hopefully) reduce inflammation but it is still important that you have adequate pain relief in the meantime. You should not be living a life of pain.

Lyn x




My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Rose-B
#26 Posted : Thursday, October 28, 2010 9:46:55 PM Quote
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Brilliant news Suzanne,

It certainly sounds like mtx is working for you. That's great news as mtx is the new wonder drug
which Specialists like to use.

I am sure that when you see the Specialist she will be v pleased with the improvement.

RoseThumpUp
suzanne_p
#27 Posted : Friday, October 29, 2010 10:09:32 AM Quote
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hi Lyn,

thanks for your detailed reply about CRP and ESA.

my ESA is showing at 74 at the highest it was 97 and has crept down over the last two fortnightly blood tests ... at the lowest when i was first diagnosed and had a successful Steroid injection it went down to 14.

so maybe i am being premature in hoping ... we shall see when i go to the Hospital end of November. i have lots of questions to ask as i have gleaned more information.

re Painkillers, i really don't feel right on them ... and to be honest the worst pain is from my knee's which have Osteo Arthritis, and both need replacing but i am not strong enough both mentally and physically at the moment. when i am sitting or in bed i don't feel the pain it's with walking. i know my limitations with walking so i manage.

if i pace myself as i am learning to do i seem to manage OK re the Rheumatoid pain, it's just there in the background if that makes sense. well as i type it is !!

thanks Rose let's hope it is working.

Suzanne x

LynW
#28 Posted : Friday, October 29, 2010 9:01:32 PM Quote
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Hi Suzanne

My worst pain is in my knees at the moment, down to the op on my left knee to repair torn cartilages and debride and subsequent flare, due to lack of meds, that decided it would play games with my right knee. Mine however is down to the rheumatoid but certainly my left knee requires replacement.

The surgeon said at 53 I am too young (how nice !!) for a replacement so the plan is to try to keep the pain at bay and joint function at its best by steroid injections directly into the knee. Had both knees aspirated and injected three weeks ago and so far so good. Still can't walk far and I still stiffen up very quickly but the pain is so much less and I can sleep at night, not right through but then I would wake up as stiff as a board!!!

Depo-medrone joint injections can be used for osteo-arthritis as well so perhaps it might be worth asking if this might help you. I understand your worries on pain killers but I have been on one sort or another for over 22 years and if the pain can be better managed you feel so much more able to face the world and all the crud it throws our way!

Just a thought :)

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

dorat
#29 Posted : Friday, October 29, 2010 9:05:39 PM Quote
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Glad things are starting to improve for you Suzanne, hope it continues.


Lyn........ask for a second opinion!
You are NOT too young for a knee replacement and there are many surgeons who agree with this, and will operate. It's just a case of finding one!

Love, Doreen xx
LynW
#30 Posted : Friday, October 29, 2010 9:28:16 PM Quote
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Thanks Doreen (oops, actually I must email you! ). But really Doreen I want to be too young ... you would have to go and spoil it!!! Sad I can't face any more surgery, stopping Enbrel, flares, ill children, and all the other crud!!! Perhaps when I'm ready for another rest in hospital I'll pursue it but for now the injections do seem to be working! Might not next time though, I suppose Scared

Will email you tomorrow ... really Smile

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

dorat
#31 Posted : Friday, October 29, 2010 10:11:33 PM Quote
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Oops! Sorry to disillusion you Lyn!LOL

Of course we all know you act your shoe size, not your age, especially when you get hold of those scissors! LOL LOL

Look forward to hearing from youThumpUp

Love, Doreen xx
Lorna-A
#32 Posted : Monday, November 01, 2010 6:44:03 PM Quote
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Hi Suzanne,

I'm back from my holiday and catching up. Really glad to hear your MTX is finally kicking in, hope your well otherwise too. I have had 3 really active days, and started work today and I am shattered, I slept for hours when I came home at 1pm. It really true the lack of sleep plays havoc with RA, I had not slept much in 3 days with travelling, and yesterday there was not a joint that didn't hurt, especially my back back. I feel better today thank goodness. Really hope you have turned the corner now too. Thinking of you, Lorna x Smile
suzanne_p
#33 Posted : Tuesday, November 02, 2010 12:08:18 PM Quote
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hi Lorna,

welcome back and hope you had a good holiday, and hope you feel rested now.

not getting my hopes up just yet ... will see what next blood tests show.

i have a Hospital appointment at the end of the month so i might wait till then to see what's what rather than phoning my Rheumy Nurse.

i have so many more questions as the months go on and learning, that i am now ready for this next appointment.

take care,

Suzanne x
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