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Date: 06.09.2017
From: John

Subject: CRP Reading

Hi. I could do with some advice please.

I was diagnosed with RA about 8 months ago at the age of 51. Up until then I was pretty healthy- it was like getting hit with a sledge hammer. I went a couple of months pretty much chair bound, but I can get around much better now, albeit slowly.

Anyway, I went the usual steroid, methotrexate, sulfasalazine route, and eventually got onto the biologic Etanercept. I was pretty exited then, as I was under the impression that it would fix me like new.
On it for 3 months- didn't do a thing! My CRP reading (should be 0-5 in a healthy person I was told at the start) ranged from an initial 11, to as high as 158, but has generally sat at around a 100.
3 weeks ago, after the minimum 3 months of etanercept, it was decided to put me on Tocilizumab, and again, high hopes.
First injection, around 6 hours after, I felt different. Maybe a tingling, bit more energy, I don't know, but different. A couple of days where I could climb the stairs better, walk the beach, definite improvement.
After 2 days, back to my usual hobbling.
Following week, 2nd injection, same thing. Really walking well, much less pain, really optimistic.
2 days later, could barely walk, and remained like that & housebound for 5 days.
3rd & 4th injections, felt no difference at all- if anything, I've been worse than I have been for a while the past couple of weeks.
I had my monthly blood test on Monday (4th Sept), and phoned for my CRP reading today- 1.2!! Now that sounds really great, but how come I can hardly get out of the chair, or hold a plate? Massively frustrating.
I only know what my CRP reading means as that was explained to me, and I don't see my rheumatologist for 2 months to gain any more information. I'm afraid to get too exited, as for every step forward, there seems to be one back.

Any thoughts/comments would be very much appreciated.

Oh, one last thing. I was told at the beginning by the rheumatologist that he would get me back to my previous condition, or at least close enough that I could go back to my fairly physical job. Is this likely?

Thanks

John P
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Date: 06.09.2017
From: luck

Subject: Re: CRP Reading

Hi John, I don't know if I can be of much help but I do know how frustrating it can be when you start a new drug and think it may be working only to be back to square one. I was 47 when i was diagnosed and have had a few experiences like yourself. I remember my CRP was over 200 at one point and that was when I was on enbrel injections, i thought at first they were helping and after a few days I was worse than ever (I think my immune system was fooled for a short time and then hit back if that makes sense) I am now on Rituximab and I can honestly say it has been fantastic, at one point I was struggling to walk and could hardly get out a chair, i can now do most things and enjoy going swimming. Sometimes it can take a while to get the right drug to suit and Rituximab took around 4 momths to work so I woudl give it another month especially when your CRP is low and if things don't improve I wouldn't wait the two months until your next appointment, you usually have a helpline that you can call for advice and perhaps get an earlier appointment.

With regards to your last question, yes it is likely that you will get back to your previous condition or at least a great improvement.

Good luck
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Date: 06.09.2017
From: lucy

Subject: Re: CRP Reading

Meant to be from Lucy not luck lol but I wish you that too.
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Date: 07.09.2017
From: John P

Subject: Re: CRP Reading

Hi Lucy
That makes a lot of sense what you say about it taking a few days for your immune system to kick back against the new med. Also that it took 4 months for your biologic to work- I am always told that any new med can take between 2 and 12 weeks to work. I think the fact that my CRP is down to 1.2 proves that something is happening, and that it's worth seeing what pans out.

The rheumatology helpline at my hospital has recently been closed down due to cut backs. The other this is, due to this 12 week ruling that they have, they won't consider me for a change of meds (barring an allergic reaction or similar) before that time is up.

Thank you so much for your feedback- that really has given me some peace of mind. Glad that things are working for you too, stories like that give the rest of us hope! Got my fingers crossed...

Thanks again

John
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Date: 08.09.2017
From: Colin W

Subject: Re: CRP Reading

Hi John

Tocilizumab is very good at getting your CRP down to 0.2 but dont mean it will improve your RA that much , would assume you are sero positive & the chances of you running around like a 21 year old are not that good

RA is all about trying to protect your joints & thats why they put you on these drugs so early , some people are pretty easy to treat but some will need to stronger drugs & think you may end up in that group like Lucy & myself , mainly because its not normal to have that high CRP with RA , you can get it with infection & trauma from a operation but RA normaly dont go over 50
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Date: 08.09.2017
From: John P

Subject: Re: CRP Reading

Hi Colin
Thanks for the information. I don't honestly know if I'm sero positive- nobody in the medical profession has ever explained that to me. All the focus has always been on getting the CRP down, and that's all. I have a little purple Methotrexate book that I'm supposed to get filled in after every blood test, but my doctor's surgery have a policy of not completing them as they are a waste of time in their opinion.
Interesting point you make about CRP not being over 50 with RA- again, I've not been told that before now.
I think I need to compile a list of questions to ask my Rheumatologist.
Thanks
John
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