Just wondering how many of us PsA peeps have elevated CCP?
My journey, like probably all of us, has been fraught with frustration. I’ve been diagnosed with PsA for over 10 years. The first rheumy I saw was wonderful and diagnosed me right off the bat. He was ready to prescribe a biologic then and there but I, in my novice PsA state, wanted to try something a bit less big gun (and less $$) to start with and work up from there. I tried hydroxychloroquine with somewhat disastrous results. So that was a no go. Shortly after quitting it I got word from his office that he was going to no longer see patients but was now going into research. Oh shucky darn! (He’s now the head of a huge biomedical research company)
The next rheumy I saw agreed I had PsA but declined to prescribe any treatment and said simply to call her when I had a flair. That in itself wouldn’t have been THAT bad except that I live only about 1,200 miles from her office. So it’s not like I could drive over and wait for her to fit me in. And it’s not unusual to wait a couple months for an opening. Arggggg!
The 3rd rheumy appt was a disaster. He was very nice, ordered tests, etc and then I totally fell through every crack in the system. After multiple inquiries to the office and no follow-up at all after 6 weeks I was beyond fed up. I have a feeling had I not written a VERY stern letter stating that it was totally unacceptable and unprofessional to be left in the dark re any sort of follow-up I probably would never have heard from him. Ever. As it was I got a single email (complete with typos!) stating that I just had OA and incidentally also psoriasis and a high CCP. When I asked about the imaging I got no reply and I never heard from him again. My PCP and I both think he never even looked at the actual imaging. Probably just glanced over the report. Grrrr! Well so much for flying 3,000 miles to a world class clinic and spending far more jingle than we really could spare.
At this point I gave up. My PCP kept renewing my celebrex prescription so I at least had that much going for me. Fast forward to now.
In my last check up with my current PCP we once again discussed my increasing pain and now somewhat deformed left wrist. He just about blew me out of the water when he said he was willing to do the blood work and screening to see about getting me on a biologic. Well slap me and do CPR ‘cause I just fainted!!!
The bloodwork is done and of course everything came back ‘normal’ (don’t you just hate that?). Except for the CCP. It is now pretty high and that seemed to get the attention of the entire office, with not a rheumy among them. I got a call saying that I needed to be seen. Now. 
I just had my follow up with my PCP, my new hero. He admitted that though he is not a rheumatologist he’s pretty sure I have a “systemic, long term, chronic inflammatory condition that needs to be treated.” In his experience my CCP levels are more indicative of RA than PsA but once again he’s not a rheumy and probably has never had any experience with PsA. He is also willing to learn, so he’s not trying to contradict my past legitimate diagnosis. But he pointed out that they are both treated with pretty much with the same drugs. Of course insurance won’t cover a biologic until you run through cheaper drugs so since we can’t afford nearly $2,000 a month to pay for it ourselves I have to go through other stuff first. But at least I’m in line to jump through the required hoops and I’m FINALLY, after 10+ years, going to get some sort of treatment. I don’t like the idea but it looks like MTX is in my immediate future.
So, now I’d like to know how many of us out there have elevated CCP levels? At this point I don’t really care if I have RA, PsA or PIA (Pain In the xxx) I just want to halt or at least slow down the disease process if at all possible.
Feedback anyone?
Oh, and BTW, if it makes a difference, my CCP has been slowly climbing since I saw the first rheumy. It is now up to 60.
The blood inflammation markers I’m familar with are ESR, CRP and PV. All of them can be normal for people suffering significant inflammation from PsA, given as PsA is seronegative for at least 60% of PsA patients. The same ones can be marked high for RA patients with a similar intensity of a flare. Hence the issue with GP’s (and far too many non expert in PsA rheumys) wanting to see them high or low to indicate your disease activity.
At my very worst my ESR can be very slightly elevated, along with PV. But the rise is very insignificant. So I’m not sure how CCP fits into that. I’m not sure mine has ever been tested either.
Hello Mom_Cat. So is this actually ‘CRP’ rather than CCP? If so, it is indeed an inflammatory marker which, in my experience, can be referred to in addition or instead of the other marker, ESR.
Back in the dark ages when my PsA was well out of control my ESR was 77 at its highest and CRP was about 45. Those levels certainly got the attention of the doctors, good ones anyway. I was a total mess at the time. They quickly reduced when I started Methotrexate but really went down low (and stayed very low) once I started on a biologic.
I realise that inflammation may not show up in blood tests with PsA and are more likely with RA. However considering all symptoms in the round, all the rheumys I’ve seen over the years (apart from one complete clown) have been very sure that I have PsA.
Does seem that you are finally making real progress with this doctor.
Yes, the seronegativity thing has been rather frustrating since it appears an inordinate number of drs seem to think if something doesn’t show up in bloodwork it’s not there or not real
Perhaps I should have called it antiCCP, which is the same thing (Anti-cyclic citrullinated peptide) and it can also go by a few other anachronisms. The small bit of research I’ve done does say that it is most strongly recognized as connected to Rheumatoid Arthritis but can also sometimes be seen in Sjogrens and some other autoimmune issues, including PsA. Just my luck I turn out to be one of the peeps that have both RA and PsA. 
At least my new hero PCP isn’t silly enough to base EVERYTHING on bloodwork and is totally aware that PsA is seronegative and sometimes so is RA. My question was mostly just curiosity. But whatever is going on he does make a valid point, the two diseases are mostly treated the same. Or perhaps I should say with the same drugs. He’s not totally ruling out the PsA possibility but is leaning toward RA. He, is after all, not a rheumatologist and does not have the hubris to try to diagnose something he is not really qualified to do. What a novel concept! But he knows I actually do need treatment beyond celebrex.
My orthopedist looked a bit…well…alarmed isn’t quite right but rather concerned when he looked at the imaging of my wrist. He walked into the exam room and said, “You have a lot going on in that wrist” Besides the significant pain I’m losing the grip and fine motor coordination in both hands as well as muscle wasting. I have a nerve conduction test scheduled in two days to find out the extent of the damage. And I guess we’ll take it from there. I really wish there was a spine specialist or neurologist in town but there isn’t one within 1,000 miles. But whatever is going on at least it seems I’m on the road to finally being taken seriously and getting some sort of real treatment.
There’s no reason why your GP can’t do most of the care for you. It’s probably easier for them to make contact with a rheumatologist for guidance than it is for you to see one. I had to look to see where you’re located but the travel thing makes a ton of sense now
That’s one thing I was wondering. So thanks for bringing that up. He does seem pretty comfortable prescribing MTX, doing follow up labs, etc. I don’t know that we would ever become besties but I like him and he is, so far, more than adequately competent. And he’s fairly young. Not so young that he’s fresh out of residency with limited actual patient experience but young enough that he’s more familiar with latest research than some of the older doctors. And I think if he ran into something that he wasn’t sure about I’m fairly certain he would call for a consultation. I have an excellent orthopedist so I will sign whatever I need to sign to enable them to communicate freely about me. I can’t remember what country you’re in but here in the US HIPA laws are starting to boarder on ludicrous, IMHO.
As far as travel, most people don’t realize how HUGH Alaska is and how difficult travel can be. When I moved here nearly 50 years ago Alaska covered 5 time zones. Technically we still do but years ago everyone got so fed up with the difficulties of a single state having 5 time zones that Alaska Time was created. At least we can communicate better even if it doesn’t make getting from point A to point B any easier. 
My rhemy measures CRP. Mine has been 60 then 40 finally down to 4.2 . Range is 0 to 3.
On enbrel and methotrate . Been on talz, humira, skirizi.
Yes both RA and PsA are treated the same for cDMARDS like mxt etc and the anti-TFNa biologics like humira and enbrel. After that they divide. PsA treatment goes down the interleukin inhibitiors mainly concerning IL17 and some others like IL 23, which aren’t relevant for RA.
Just another note hydroxy (being another cDMARD) is no longer recommended for PsA but it does seem the USA loves it. So be aware of that. It can cause psoriasis to increase and just does nothing for the PsA led inflammation. It’s off any treatment list for PsA in the UK now as in counter indicated. The other cDMARDS to start on would be mxt, but also sulfasalazine and indeed leflunomide (arava in the USA). Mxt by far has the better rap in helping. Hope this helps.
Thanks for that info, very much appreciated! And I resoundingly concur that hydroxy is NOT good for Ps peeps! NOT doing THAT again! 
I’m going to go ahead w/MTX and see how things go from there. Like I said earlier, at this point I don’t care if I have RA or PsA or some other autoimmune ball o’ fun. I just want some, hopefully effective, treatment to see if my life can get back on the normal train. Or as normal as can be, given the length of time things have been going untreated. I really hope MTX will help with the fatigue. It’s a toss up which is worse in my book, the pain or feeling like your lot in life is to constantly wade through concrete.
A few tips for taking mxt. Therapeutic dose for PsA and RA is 25mg per week and for severe psoriasis it’s 30mg. You need to build it up slowly as first you need to see how your liver and kidneys react. So you have blood tests done initially at least once every two weeks. But you should be on 20 to 25mgs by the end of 12 weeks. Up your water intake the day before, the day of and the day after taking mxt. This is the best thing you can do. In the UK we say up your water intake to 2 to 3 litres per day. This level of hydration is important. Take your tablets or injection in the evening. Ensure you’re prescribed folic acid as mxt depletes folic acid so it needs replacing. Usual dose of folic acid is at least 5mg per week. But they’ve found giving 5mg of folic acid up to 6 days a week (just not on mxt day) can help initial side effects. And remember mxt takes time to work so it’s a bit of a waiting game. Assuming your dose is appropriately increased helps it to get going faster. You might find you’re a bit spaced out initially but those side effects fade. Millions of people find mxt works extremely well, so please keep that in mind. Best of luck.
Thanks Poo. You’ve always had great input. It is greatly appreciated.
The increase in water consumption will be a bit of a challenge seeing as I already drink between 75 and 90 oz a day, which is nearly 3 liters (or 100 oz) I get pretty thirsty if I don’t. So are you saying I should drink even more than that? I seriously doubt I could, or even should, try to drink another 3 liters on top of my normal consumption.
No I’m not saying that. Many people simply don’t drink enough daily to start off with. With mxt or really any new to you med, being properly hydrated is really important. It sounds like you’re already properly hydrated. Best of luck with mxt again.
Poo! You sound like a doctor! Awesome. You hit the nail on the head with your advice about how to start mtx. FYI I started mtx 5 years ago, age 69, with 20mg. It made me loopy for a day and a half after. Rheumy dropped it to 15mg. Then she thought I had a flair during covid because of one blood number so bumped it to 17.5mg, which I have been on for a couple years, no day after effects. I forget about the water part, thanks. And the need for folic acid! So yes, mom cat, give mtx some time, don’t be afraid to suggest dosage change to meet your needs. Let’s hope it works and you can get off the merry go round. ( oh, I take 4 sulphasalasine tablets a day as well)
No I’m simply a curious patient. But thanks for the compliment. Giving our meds their best chance is key to feeling better though. Do remember the water…not soda or coffee but just water. It can make a heck of a difference.