Sero Positive (high CCP) but ESRand CRP are normal. How do I know if the meds are working?

[Lucy11]

Does anyone else have sero positive RA with a high anti CCP but all the blood markers for inflammation are normal? My ESR and CRP are zero. My Rheumatologist said this sometimes happens. The first month he put me on 10 mg Methotrexate and 5 mg of Prednisone and on month #2 he started me on Humira and tapered off the Prednisone. (I'm happy to be off Prednisone as it made me hyper and crazy) My question is how am I suppose to know if the meds are working? For me I only have the clinical evidence and symptoms. I clearly understand that 7 weeks is too early to know if the meds are working but right now the symptoms jump around. Everyday it's something different. One day it's my ankle, one day my feet then the elbows, etc...I don't know what to expect. What I've read from others is that the symptoms may lessen but don't often just go away ( although that can happens, too) I log my symptoms daily but I find myself not knowing whether it's RA or from something else that's normal. Thank you.

[JacquiThomas999]

I have just been told that the steroids mask some of the blood results and then won't know the true figures until I am off them.

[Lucy11 in reply to JacquiThomas999]

Thanks for this. The results were from my initial blood tests before I was put on any medication.

[Matilda7]

I haven't quite understood your situation. Did you get put on Humira 1 month after diagnosis? Have you been on other drugs previously?

[helixhelix]

Presumably you're American....... Across the pond we don't have same access to biologics, but then we pay modest national insurance contributions rather than the U.S. Insurance costs.

Anyway, blood results are only part of the picture. I'm also sero-positive and after the first sniff of Methotrexate my inflammation markers dropped like a stone and have stayed at normal levels ever since. Well, a slight exaggeration, as when I flare my ESR can rise to 9! Which most people think of as pretty normal. My normal is 2.

You'll be able to tell when they're working much more by the way you feel. 7 weeks is very early, and you may well have a bit of a blip now the steroids are tailing off. it often does jump around to start, and if you've been basically healthy up till now then then the most likely cause of different aches and so on is the RA. I likened it to an animal on the run, scrabbling around my body trying to find a corner to hide in where the drugs wouldn't find it. But they did, and I remember the first magic moment when I went through a whole morning without even remembering I had RA. It will happen, so stay patient.

[moomie in reply to helixhelix]

Interested in your markers Helix. You make me feel better. My esr usually is 2 also. Having a flare at the moment, last entry in my book in December it was 9 2 weeks after a depot medrone injection.

Thanks for making me feel better about this and an oddity.

[Lucy11]

I'm American but I live in Switzerland. Health Insurance in the U. S has it's problems for sure and the monthly cost can be stupendous. There are many in the U. S who don't qualify for certain medicines and must pay very high premiums to obtain. Prior to moving to Switzerland I paid quite a lot for health insurance and never really needed it. Here in Switzerland the cost is even higher and my insurance isn't the best. To be sure, all countries are different. In the U.S as well as in Switzerland you must also 'fail' on Methotrexate which can be up to 6 months unless you have a high anti CCP test. It can't just be positive it must be a 'high' positive as the consensus is that this indicates the possibility for a more aggressive, degenerative form of the disease. I'm learning that this isn't always the case and I feel for the people who can't even get a proper diagnosis. In the same sense, I'd really rather control this disease without biologics. Some people do quite fine on only Methotrexate. I think I'd rather that be the case for me. I just wish that whatever anyone needs it's available to them in the most timely fashion.

Thanks so much for the advise. All good stuff. I'm having a really hard time knowing what to do, or to think, or to feel right now. Your reply really helps a lot. Thank you.

[helixhelix]

Yes of course, you had said you were across the border in Switzerland (so it's over the hill rather than across the pond I'm in France most of the time).

Getting this diagnosis does turn you upside down if you're not used to close contact with the medical world. I know to start with I focused on every tiny twinge, sniffle or temperature change and was convinced it was something awful. Pre-RA I think I would just ignore occasional aches, and not even think about them. But after it all seemed important.

Over time you get to know what your normal is, and learn to wait to see if a symptom settles into something. Temperature over 100 for 24 hours, breathing difficulties, coughs that last more than 3 days, and I'm off to the doctor. Otherwise I rarely bother. Keep a note of things, and you'll probably find patterns that will help you pace yourself.

[Jacey15]

Hi, I am in the same boat. I have never had a high CRP or ESR. I have seen one consultant who refused to accept any of my symptoms because of this. Personally I identify joint pain as an RA symptom if that joint is stiff when I wake up. Good luck with your treatment journey,

J xXx

[Lucy11 in reply to Jacey15]

Jacey, did you test positive for anti CCP test? I assume you saw another consultant who did in fact accept your symptoms via clinical evaluation and I trust that you are now receiving the treatment he/she deemed necessary. My hands are the only thing that are stiff. The other joints just have pain. The pain comes and goes and at the moment jumps from one joint to the other from one day to the next which is why it's hard for me to determine whats going on. Helix commented above that this also happened to her in the beginning. It's early now so I will just wait and hope it all calms down in time. I wish you the best..

[Jacey15 in reply to Lucy11]

Yes I am both RF and anti CCP positive. I am on methotrexate injections but my level of pain stiffness and fatigue vary widely from day to day so I really can't tell if the methotrexate is reducing the effect of RA - I've been on it for a year now. I do hold out hope that I will go into remission like my Aunt who now needs no treatment at all 😊

[Onslow315]

Hi,

I am in a similar situation as you. I have high CCP and borderline RA factor. ESR and CRP are zero. My diagnosis (2 years ago) was based on the blood tests and a swollen finger. I was put on Plaquenil. I got steroid injection in my finger. Injection solved the problem. Doctor kept me on Plaquenil until this month. I asked same question as you "How do I know if these meds are doing anything?" I was told blood tests won't indicate if meds are working or not. Also, was told that there is no reason to retest because it won't tell us anything. I also question my diagnosis. Is too much weight being put on the result of this blood test?

[Stynk]

Hi. This is the same with me. My platelets go up when I am in a flare but you can see redness and changes in my joints. It's still early days. Hope the combination you are on works for you.

[Lucy11 in reply to Stynk]

Did you also test positive for anti- CCP? I'm really interested in learning if there are people who tested positive to this anti body and have been able to control their disease relatively well with medication. Thank you for your reply and I hope whatever treatments you are on are working well for you!

[Stynk in reply to Lucy11]

Hello I am was high positive for anti ccp and rf. I was in plaqunil then after 12 weeks add mtx then humira but had neurological side effects for me so now on rituxan and doing ok. It's hard but still working in financial services and I have two kids and hubby. My life is slower and I have to plan more, I work from home a lot and be careful but it's much better on meds than off. I can tell when the rituxan starts to wear off. Iam not in remission but not in full blown flare either. At say 60% of what I was pre RA but that is good. I am pleased. It's a bitter diagnosis but you can still have a life and future.

[Lucy11 in reply to Stynk]

Thanks for this. I wish you continued relief in your treatment and loads of joy with your family. I'm really happy to hear that you found a way to be very pleased while not in complete remission. There's hope for all of us.