Aggressive RA

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I saw the Rheumatologist this morning, when I asked how my inflamation markers were he was silent for a bit then said yours is the most agresive form of RA I have ever come across.   When I again asked him about inflamation markers he was again silent for a bit then said they were off the scale.   I'll be busy for the next month CT scans, eye tests, blood tests and a battery of other tests.   Still five weeks before I'll be starting on tocilizumab and he asks if I can make it through, funny question, not as if I have a choice.   So dam sick of this crap!

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  • Posted

    I hate to say anything negative about your doc, but if there's any consistency to all of our stories I read here, it's that we all are different, we have different markers, we have different test results and different outcomes with our meds. There's no reason to assume the worst from a test result. (or the best either unfortunately)

    If there's a good time in history to have RA (or ?) it's now. All these different drugs weren't around when I was young and saw sweet little old men and women crippled up from arthritis. Now I've got the same thing they had but I'm on a new "disease modifying" drug and doing as good as some I know that can't keep their diabetes under control because they can't lay off the chips and dip!

    Tony, temper your doctors words with some of the wisdom you've picked up from sites like this one with the variety of successes we have. If you don't respond to the first round of meds there's certainly a good chance something will give you a pretty reasonable quality of life.

    I don't want to be overly optimistic because I've been at witts end myself with this stupid disease but for now I'm in a good place and hope you'll be soon too.

    I hope you can send an update with positive news soon.

    Em

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  • Posted

    Hi Toni, so sorry to hear that.

    On the bright side, you do have a way to track your condition and progress of treatment. Try to look at it this way - in a while the markers will go down. After you get the right treatment they will go down. AS EN said? Now it's a good time to have RA. Much better than 10 years ago.

    There are about 40% of RA sufferers without elevated markets. I was diagnosed after years of complaining and was told anything, starting from "it's in your head" as it started when I was young... It was not in my head but in my joints... Clinically proven...

    There is no such thing as off scale - where exactly does the scale end? How many RA patients did your dr see? Don't let his/her reaction to let you down. You will do the tests. Actually it's great to be extensively tested. Ask questions. Research. I hope that they will make it work for you soon. Good luck!

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  • Posted

    Tony, sorry for the scary news!  However I so agree with ama38049..you need to be persistent in getting copies of all your test results so that you can  educate yourself on these issues.  Off the chart is not really acceptable.  You may have the best Dr. around, but at some point you may disagree with diagnosis or treatment and want to see someone else.  The more information you have, the easier it is to make these decisions. I wish you the best..all those appts sound overwhelming, but hopefully you will have a plan soon.
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  • Posted

    Tony - I know we have talked previous, I really hope the biologiscals work for you, I will be delighted for you if they do.

    Regards tests, I know exactly where I am at, and so does my regular GP, so i have him to fall back on when I can't get to see the specialist.

    When i was first diagnosed 10 years or more ago my ESR was 45 and CRP in the 20's.

    I have been able to discuss with GP I am feeling better or worse, hows my monthly test results.

    My specialists tells me I am her most intractable patient, they do so love using these big words, don't they must make them feel important

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  • Posted

    I have all the numbers for inflamation, they are quite wide ranging starting from a low of 7.8 to a high of 80 for CRP and for ESR 25 - 78.   Doc is starting me on Tocilizumab infusion as of 14 June, hopefully that will help.   Started new anti inflamatory diet today: no dairy, meat, nightshades, wheat and so on.    Had to do something the pain is just getting worse each day, I wonder what my CRP and ESR will be up to in a months time???
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