Anti CCP +

[cshah]

Hi all,

Just curious about fellow patients with anti-ccp positive RA status. I have read that anti-ccp positive typically indicates more aggressive disease course and worse joint erosion.

I started enbrel a few months ago and was feeling great, but now I seem to be back where I started. Today I’m in pain on bed rest. When I try to put weight on my joints they feel ragged. I can almost feel the damage worsening.

Anyway, I’m wondering if any of you with accp+ test results have achieved remission? Or a substantial period of stabilization of symptoms?

Thanks for sharing any insights!

Carolyn

[aramire1]

I had a very high Anti-CCP and was started on methotrexate in November. When I had my appt in February my rheumy said i was in remission! So far still pain free besides my one thumb...which i can definitely live with!

[cshah in reply to aramire1]

You probably have permanent damage in that thumb. Surgery might be an option to help with that. Glad to hear you are doing well though!

I’m holding off on methotrexate for now. Would like to get pregnant in the next couple of years. If I don’t have any luck I will probably throw in the towel and try the MTX.

[oKerrio in reply to cshah]

Sulfasalazine is safe durning pregnancy and trying to conceive I was told might be worth trying that?

[cshah in reply to oKerrio]

Tried that a while back and it didn’t work at all for me. Switched to enbrel with the plan to stop taking it immediately if I become pregnant. But now it seems the enbrel isn’t working either.

[aramire1 in reply to cshah]

My thumb is not bad...i have full range of motion with no pain..just hurts if i push on it.

We have actually been trying to get pregnant for almost 10 years now...have done a few rounds of IVF with no success (4 miscarriages in there). I am planning to go off MTX in the next few months and see what happens with getting pregnant again. I have an appt in August with my rheumy and was going to discuss it more then with him, but at my last appt he recommended staying on the mtx for a year to get good control and then would be fine with me going off and seeing what my happens. My husband was just diagnosed with diabetes and they think he has had it for years so we are hoping that now that he has that under control and my RA is under control we may have more success!!

[ks1966 in reply to aramire1]

Hi. Did your rheumy tell you that you're in remission because your anti Ccp levels went down ? And are you still on methotrexate? Thanks

[aramire1 in reply to ks1966]

No...he didn’t check my levels again...he said I’m in remission because I no longer have any pain. I had pain in my feet, hands, elbows, ankle and knee on diagnosis and now have none except minor pain with palpation to 1 thumb.

Yes...I’m still on methotrexate.

[wishbone]

I have anti-ccp positive RA, and according to my rheumy, I have an aggressive form of the disease.

Enbrel worked great for me and I believe it did put me in remission, at least for a short while. Unfortunately I had to stop taking it because of side effects.

It doesn't seem to be working too well for you. Have you spoke to your rheumy about it?

[cshah in reply to wishbone]

Yes it seems it isn’t working very well for me. I have an appointment coming up with my rheum in a couple of weeks and will discuss then. I may reach out to him before to see if I can get some prednisone if this doesn’t let up.

Have you tried any other interventions since you had to stop the enbrel?

[wishbone in reply to cshah]

I'm not a typical case and am prone to infections because of another chronic health condition. That's why I had to stop taking enbrel. So my rheumy and I have had big problems finding a med to suit me. That said, I've recently started taking baricitinib, which is a new class of drug that's only recently become available. Early days yet, I'm on my 4th week, but it's definitely helping me though not to the extent that enbrel did. Still, the way I've been this past couple of years I'm more than grateful for any amount of relief. Can only keep my fingers crossed about infections.

Don't stay in pain...go and see your rheumy if it's bad, and it seems like it is.

edit...forgot to say that I was also taking methotrexate as back-up to enbrel.

[cshah]

Thanks wishbone. I will give them a call tomorrow. Sorry to hear about your struggles. I hope that this new medication works for you for the long term. You deserve to get some relief!

[helixhelix]

I'm anti-CCP positive, diagnosed about 8 years ago and in remission on triple therapy for 5 of those. I'm last year or so things have slipped so just about to start Enbrel.

My wonderful first rheumy said that sero-positive can be more slippery to treat, but wasn't necessarily more aggressive. For the first few years I was labelled non-erosive anti-CCP positive as it was so well controlled.

[wishbone in reply to helixhelix]

Hi helix, is anti-CCP positive and sero-positive the same thing?

[helixhelix in reply to wishbone]

Mixed opinions.....classicly sero-positive RA was people who were positive for rheumatoid factor, as that test was the first one used. When anti-CCP came along some rheumys also called people positive for anti-CCP, sero-positive. Other rheumys specified anti-CCP positive, and only used sero-positive for RF factor. These days it seems a bit more random...

[wishbone in reply to helixhelix]

Thanks for clarifying.

Think I was told my bloods were sero-positive when diagnosed 15 years ago.

[medway-lady]

Yes and now in remission. I take LEF with no problems or issues. I have a normal life.

[Hidden]

In January I was RF 410, AntiCCP > 300, ESR 30, and CRP 12, diagnosed as double positive RA. Took Plaquenil for 4 months with no improvement. Currently now on low dose Pred (5mg daily) and high dose Vit D. Reason for this => 7 days of Pred took my ESR and CRP down to just above normal, and not keen on MTX. So, after 2 weeks, have reduction in foot swelling problems, hands still an issue - but I expect at least another 2 weeks for decent improvement, if it comes. , cheers Deb

[Deb_Dragon]

Hi, I am still only part way down the road of diagnosis so I can't advise, but I just wanted to mention my Anti-CCP level of 911 😱 No, it's not a joke or a play on the US emergency line, it's very real. I am awaiting an ultrasound on my hands and feet next week and will then hopefully be diagnosed at my next Rheumy appointment in October. So far I'm being considered for RA, Lupus, Ankylosing Spondylitis and Psoriatic Arthritis. I have had an enforced break from Prednisolone, the only medication so far that has had any effect, whilst my tests continue. I have been told I will likely be prescribed Hydroxychloroquine but I am trapped in this nightmare of no further treatment until diagnosis. I have had a particularly bad day today, because I went for a swim this morning 😒 Can't do right for doing wrong! I really hope the end is nigh and that I can finally face whatever it is I have to deal with...whilst being able to participate in discussions about treatment!! 🙄 Good luck to you all xx