High Anti-CCP and disease progression

[Blueza]

Does anyone have any experience of high anti-ccp numbers and RA being more damaging?

The first time my tests were done, nearly two years ago, my anti-ccp was 79, with Rheumatoid Factor being 264. At the moment, it's mainly my feet that are effected with some bone erosion starting in a couple of MTP joints.

I've been on Sulphsalazine for the last 6 months (I avoided meds for some time and changed my diet as a first step). The rheumatologist has said that I really need to at least add 10mg of Methotrexate weekly on top.

Recently had my bloods done, and while my RF went down to 199, my anti-ccp is up to over 500.

My CRP is nearly always less than 1, and ESR this time was at 2.

Would be great to hear if anyone has any experience with high anti-ccp and disease progression being faster / more damaging.

Many thanks.

[Boxerlady]

My original anti-CCP result in 2019 was 340 which is when I was referred to rheumatology. I started Methotrexate and Hydroxychloroquin immediately and Sulphasalzine was added a couple of years later. At one point I was on 25 mg Methotrexate but was able to drop it to 15 mg once things were under control. I'm doing well with no obvious damage so, for me, aggressive treatment has had great results.

[Blueza in reply to Boxerlady]

Thank you so much for your reply. Good to know how well the meds have worked for you. It's so helpful to hear different experiences, and how things can be bought under control.

[HappyD34]

Hi there Blueza. My RF is 24 but my Ccp is 264 so I’m strongly positive. The consultant said the bloods aren’t good BUT it just means that the disease is more persistent , it doesn’t mean the higher your Ccp is the worse your disease is so please don’t be afraid. It’s taken along time for me to get my head around this and I was diagnosed in sept . It’s great that you’ve managed to change your diet 👏👏 however I would definitely take your rheumatologist advice. They want to treat to target and that means treating it mor e, I will use the word assertively. I too had the feet issue and mine was almost a pebble under my foot but my methotrexate has ramped up since oct from 15, 20 and now 25 and fingers crossed my foot is better. They will probably keep a closer eye on you which is really good. In fact someone on here said it’s almost better to have the seropositive aspect as it’s a known then you have RA , some are very unlucky and have all symptoms but the process is sometimes slower for them as it’s not a “definite” when it probably is. Hope this is of some use, I’m still learning but I’m sure those with more knowledge and experience will respond, Take care xx

[Blueza in reply to HappyD34]

Thank you for taking the time to reply HappyD34. It's really helpful to hear other people's stories. I think it's taken me a long time to accept what's happening, and I'd hoped that by changing my diet would mean things would improve as other than feet I didn't have any other noticeable symptoms but lately I can feel things are more 'creaky' shall we say! I do very much respect the rheumatologist's opinion, maybe it's just taken me longer to come to terms with it all. I've also suffered hair loss in the past and found the experience really distressing, and am anxious that this will be the case with Methotrexate (which again is probably why I've held off and chose Sulphasalazine initially, but that doesn't seem to be working as well as it needs to). May I ask if you've had hair loss since you started the meds last year? x

[HappyD34 in reply to Blueza]

Hi there 🤗. I asked to take methotrexate by injections instead of tablets as it bypasses the stomach and less symptoms. That was great advice from someone on here ☺️. No hair loss but I had some bowel issues but these have settled down, so far I’m coping on metho. It’s a lot to get your head around isn’t it and I have down days for sure but this is mainly because I’m trying to understand a new normal. I was told again by someone on here that it can take 12 months to get settled into meds and first year can be harder until the meds are right. My counsellor said to trust the rheumy team as they haven’t let me down 🤞🤞. I’m Chester based so not sure where your team are . Cheerio

[RAat13 in reply to HappyD34]

Keep a close eye on that "pebble"I no longer have a toe because of said "pebble". For me that pebble was the head of the joint working its way out, RA has eaten the rest. Caused a huge infection under my foot which had no where to go so attacked my toe also.

Maybe ask to be referred to a podiatrist so they keep an eye on it also x

[Kati66]

Hi Blueza, when I was first diagnosed in dec 22 my Anti-CCP was over 500. The only other time I had it tested was just before Christmas last year and it was still over 500! They are now putting me on a biologic to try and get the RA under control.

[Blueza in reply to Kati66]

Thank you for getting back to me, helpful to hear you have similarly high readings. There is lots to learn. Hope the biologic works for you🤞

[HappykindaGal]

My comment isn’t going to sound too positive (sorry!). I have and yesterday ended up on the knee transplant list as the damage is so severe I can barely walk from the lounge to the kitchen. RA is a brute 😪😪😪

[Blueza in reply to HappykindaGal]

Thank you so much for replying - really helpful to understand it more and hear of your experience. Am so sorry to hear about your knee

[HappykindaGal in reply to Blueza]

I knew it was bad as sometimes I can barely put my foot on the floor. Not so much the pain, but fear as it can be unstable. I’ve been on mtx and biologics for 8 years but have had inflammation, particularly around Covid times and the damage was done. It’s a pain!

[RAat13]

I have, what my consultant says, the aggressive of the aggressive. I have no idea of my numbers, my letters always say strongly positive. The damage I have is extreme, had a toe removed because a joint was so damaged it caused infection, even if i hit a joint I get an infection.Currently waiting for surgery on my hands, left is first, my fingers have "fallen" off the knuckles so getting 4 knuckle replacements and a wrist replacement, my right hand is more extensive.

The ulnar drift is severe.

I have snapped tendons in my feet and fingers.

I'm 36, had this for 23 years, and 16 years ago my hips were replaced because of it.

In my experience I'd say yes but I have the aggressive form so not 100% sure.

Have you asked your RA nurse?

I'm on Sulfasalazine and Rituximab, as well as many other meds for various co-morbidities.

It's a fun life lol x

[Blueza in reply to RAat13]

Thank you so much for your reply - sounds like you've really been through it, and interesting to understand that for some RA is more aggressive in terms of damage - I hadn't realised how varied it can be.

My rheumatologist has noted I am 'strongly positive', but hasn't used the phrase 'aggressive'. So far I've not noticed my symptoms are too bad, other than my feet (I got diagnosed nearly two years ago). Although I've noticed in the last week things have got worse in my knees - possibly as my anxiousness has risen. I've heard stress can have a big impact on RA, so need to find better ways to managing it.

All the best for your upcoming operations.

[Numptybrain]

It’s affecting my lungs in the form of Serositis, I’ve been like this for over a year but and the wrong rheumatologist first who was only repeating I didn’t have lupus sle but I kept asking him what is it and he wouldn’t answer even told me there was no more tests! Second rheumatologist, loads of tests and ultrasound of hands and feet , told me immediately he believes it’s seronegative RA and I also have sjogrens. As for my lungs it’s pretty aggressive.

Take care

Wendy xx