Is it possible for me to be in remission with high CR... - NRAS

NRAS
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Is it possible for me to be in remission with high CRP level?

I have RA & recent blood work showed CRP level is 130 (last February is was 220). Normal level is 0-5. I have been off meds for almost year and feeling pretty good. Has anyone else had a CRP level of 130 - 200 or higher?

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My Sdaughter had a CRP well over 200 recently due to an infection following a caesarian. But everyone's different (my normal is around 10) and at least yours is heading in the right direction. But was your doctor at all concerned?

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Yes. She wants me to start taking Embrel. I took Humira for years until I had an infection that lasted almost a year and had to finally quit. I haven't been taking anything for the last year.

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I don't want to go back on those drugs if I don't have to.

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When you say you feel pretty good do you mean you have no pain or swelling and feel back to normal or do you mean all things considered? Have you had any other problems that may have given you an infection with a high reading perhaps?

If you feel pretty normal and unbothered by pain, fatigue, stiffness or swelling then it does seem very strange that you still have a pretty high CRP, but then some people complain that they are still in awful pain despite having low inflammatory markers so these blood tests are so confusing I agree. I even wondered today what would happen if I just stopped taking the methotrexate. How do I know it hasn't just gone away now - I might be taking MTX without needing to? Sorry not much help here but I guess you need to question the doctor further and ask for ESR and scans which might confirm that the disease is still active even if you're not feeling aware of it? TTx

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Tilda, i haven't taken my mtx due to infection and my joints are really sore,i am going to see rheumy at the end of the month and we will see what they want to do. I am in regular contact with my nurse so she knows how i am doing. I ache more all over now, some days are worse than others. I know my knee is a big cause of my problems and i am pinning so much on this op i don't know what i wil do if it doesn't work. I will think about it after as i would get depressed if i dwelt on in now.

Mary i can't tell you about your readings i am afraid. The one worry you should think about is what damage is being done to your joints even though you are feeling great now. I would get your joints x-rayed regularlly to make sure there is no damage to them.

Best of luck.

sylvi.xx

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I know Sylvi - I won't stop taking it don't worry, It's just a thought that keeps occuring to me because I'm relatively new to this and so many big changes going on in my body over the last few years that I keep wondering if this hasn't just been part of the hormonal changes taking place and mightn't just up and go without the MTX. But I do still have fingers that won't bend properly and my wrist is achy and sore as are ankles so these are just enough of a reminder for me to know that it's important to hang in there really! I do hope they get you sorted out soon with another DMARD - seems far too long to leave you hanging on although hoping that the knee op makes a big difference to you. TTx

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I have an op coming up Tilda so until that is over i won't be able to have anything.

THanks for your thoughts. xx

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I guess my feel pretty good means all things considered. I still have some pain & swelling but I am so use to pushing through with it. I have not had any major joint flareups & my X rays showed mild disease progression over last year. I was on Humira for 6 years & it worked great but I got an infection that I could not get rid of for a year. I have been off all meds for a year except pain meds. I have not had infection since I went off a year ago.

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That's a difficult one, as sounds as if you can cope at the moment and none of us want to stuff ourselves full of weird drugs. But if your x-rays are showing mild disease progression then that would be worrying to me. It's not just being able to cope now, but thinking about the next 30+ years and I know I don't want to have any more damage. Once damage is done it can't be reversed (just fused or relaced which is rather scary). Choices are of course individual, but if I were in your position I think I'd be wanting to try Enbrel and get the disease activity stopped in its tracks. Polly

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As Sylvi says are you willing to accept that this slow progression might continue to damage your joints? Putting up with the pain is one thing - I am the same re the pain - but having joints that are deteriorating and may eventually limit your range of motion significantly is another matter and that's why I stay on the methotrexate. But then I don't take any pain meds because I can put up with a degree of pain unless it flares up - but can't bear the idea of immobility in the short or long term. You can reject your rheumy's advice but have to be prepared to live with the consequences if you do I suppose. And yes as Sylvi says regular x-rays and scans might be the best way of determining the disease's activity and damage if you choose not to take the drugs. TTx

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PS suggest you read Loret's "Three Days and Counting" blog for a different perspective to your own on these medications and the effects of not having them.

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good thought , Tilda. As I have been reading these blogs, I'm intending to point that out. I put up with the pain for so many years, as I had no choices. It has only been in the last 15-20 years that anything besides aspirin has been available for treating RA. So I am a prime example of what happens, even with just an achey stage, it's still damaging!

I have so often said, especially when I first started on MTX, if only I could have had it sooner, maybe my feet,ankles, hands, wrists and spine would not have gotten this bad. I can only be gratefull that the 8 spine surgeries were done, and allowed me to walk again.

Now, I'm going to get my wrist repaired, so it will be flexible enough to do a Queen's Wave from across the Pond! Love you all! L. xxx

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Hi Mary, I wonder has the doctor done any other tests to check other reasons for high CRP i.e. infection, other medications, heart disease even taking the contraceptive pill can increase numbers.

Beth x

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to Beth58 - yes, they have done a million tests on everything except heart. I have not ever had any heart symptoms and I saw a cardiologist a couple of years ago.

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Oh gosh. Beth, I do not want to alarm you, please don't get upset...but RA and some other auto-immune diseases do attck the heart, the cardio-vascular system. It is an inflammatory disease, it can set up shop several places in the body. CRP is a marker of inflammation, sand if all else has been ruled out, the cardiovascular system should be checked also. That's the crummy part of the whole disease, the inflammation can be in the inner lining of blood vessels, causing scarring, which can lead to obstruction. Another reason for the DMARDs and Biologic drugs to fight this inflammation progress. You would not necessarily have cardiac symptoms until it's too late

Alot can happen, silently, in 2 years! Best be safe and get that part investigated, since they ruled out other causes for elevated CRP. That is very high. We'll be thinking of you, let us know how it goes. One little symptom you might feel, is feeling warm, more like a glow, not like a hot flash, just a slight rise in temp. All the best to you! Love, Loretxxx

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Loret I think you mean to say "oh gosh. Mary..." rather than Beth? I am slightly perturbed by your mention of the warm glow as I have this right now - it was with me before the RA and comes in washes for a few weeks and then disappears again. It is in my limbs rather than a menopausal flash in neck and face and is not unpleasant at all.

I have had it for a few years but have never had my heart checked since RA. But my CRP was low at 13 when last checked a month ago so I guess this warm glow doesn't relate to my heart. I always worry a bit about heart related things because both my parents died from them quite suddenly - but I had this checked out a few years ago and my GP tells me it must have skipped past me as these problems would have been picked up on - they don't develop from nowhere - they are always there to be detected if that makes sense? TTx

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