High Anti-CCP

[Time_of_my_Life]

My Anti-CCP test was very high at somewhere around 160, which my RD told me meant that I had a more severe case of RA.  That was 1 and 1/2 years ago and still have not had any inflammation or swelling.  I am just wondering what  I can expect in the future with my results coming back so high.  Will it be harder for me to fight this with AP?  I have stressed about this every day since day one of my diagnosis.  According to my RD I can expect to go downhill fast. Is she right or is she just scaring me? 

Lori

[Tiff]

We were just talking about this test and its implications on another thread.  Check it out:

http://www.rbfbb.org/view_topic.php?id=257&forum_id=1

it is called “Results from Doc” if the link doesn't work

[Donners RA – AP 1 yr]

I have a high Anti-CCP too.  When I was diagnosed 2 years ago, it was 164.  After being on AP for 8 mths, it was down to 100.  I've now been on AP for 14 mths and see the Dr next week.  I'm hopeful that it is down in the 80's.

I understand exactly how you feel about the high #.  I have days where I just wonder what is going to happen.  I try to not have too many of those days.  My Rheumy told me that if I didn't take the Rx he prescribed, I would be crippled in 2-3 years.  Well, it's been 2 years and I have no joint damage.  I'm like you, I don't have the swelling or redness usually associated with RA.  I have random joint aches and pains and burning, etc.  I guess what I'm trying to say, is don't let this one test deter you from AP.  You're going to be fine!  Dr's don't know how each individual will react to disease, everyone is different.  Try to think about today and if you're feeling good, don't worry about tomorrow.
:blush:

[Time_of_my_Life]

Thank you for the reasssurance.  I don't intend to let the high number deter me from AP.  I just worry if we are more prone to developing joint damage that we are unaware of since we are not having the pain and inflammation.  I worry about what really is going on in my body.  I have asked my RD to retest my CCP but she says that its unnecessary because once it reads high it will always read high.  That frustrates me as I would like to have it retested.  Now that I have read that your numbers have been going down reallly makes me want to retest.  I have been on AP for a month now and things are going well.  I have not herxed but realize that not all people do.  Did you have any type of Herx symptoms?

Wishing you continued Healing.

Lori

[Donners RA – AP 1 yr]

Lori,

I did have herx symptoms, it took about 3 weeks to happen, and still do if I try to increase the Minocin. Someone from another board that has been on AP for 11 years advised me to increase the dose as my knees were aching and I herxed.  Have you gone to the other website.  There are alot of great people there too.   Are you taking brand or generic?  Also, how often are you taking it?

As far as the Anti-CCP always being high.  That just isn't the case.  I'm not the only person on this board who has had the level drop after being on AP.  My level is still high, as my Rheumy likes to point out, but I figure any lowering is a step in the right direction.  I waited until I was on AP for about 6mths before I retested my Anti-CCP.  You might try that and then request your Dr. to retest you.

Hang in there.  Everything will be fine.  The longer you are on AP, the more confident you will be.  It's a scary thing at first, but it gets easier.  Dionne

[Time_of_my_Life]

Dionne – Which other board are you speaking of?  This is the only board I have been to and would like to join others.  I went to Dr. S in Iowa and after 5 days of IV clinocin, 900mg twice a day, he put me on Minocycline 100mg twice a day x 7 days.  I seem to be doing fine on that dose.  I also take Probiotics and Fish Oil.  Also Plaqunel 200mg twice a day.  When I started the IV's I went off of Methatrexate cold turkey.  I had no negative side effects from doing that after being on it for 1 1/2 years.  I do notice now that I am not as fatigued as I was on it and the foggy feeling I felt while on it has definitely lifted.

How does your RD feel about you being on the AP?  I have not told my RD yet but have an appt. in May and will have to address it then.  I am afraid that she is not going to be happy with my decision.  I just hope she will continue testing my levels.

Lori

[Donners RA – AP 1 yr]

Lori,

The other website is Rheumaticsupport.net.  I hope this board doesn't mind that I told you that… It's a really good website too.

My Rheumy doesn't believe in AP.  She thinks it has anti inflammatory properties, but that's about it.  She wants me to be on Plaquenil too. I was on it prior to AP, but stopped when I started AP.  I don't have a problem taking it, but think that I'll save that for when/if I really need.  Be prepared for your Rheumy to think you're crazy for being on AP.  I don't know what it is, but most of them just don't agree with it.

 

 

[Time_of_my_Life]

Thank you Dionne.  I'll check into that site.

[Maz]

Hi Lori,

I  have a high anti-CCP, too, although Quest doesn't specify what the number is beyond being greater than 60, the upper marker for severe disease.  While I was frightened by this in the beginning, I got quite a bit of reassurance in knowing that this test is relatively new and wasn't even around when Dr Brown was practicing, yet he still had an 80% success rate with patients on AP. 😀 

Although it may not be the same for everyone, gauging from my own experience, RF tends to be more reflective of current status – how I'm feeling in the moment – and anti-CCP has been slower to respond.

If memory serves, Joe M. shared a study a while back that showed some lowering of anti-CCP has been observed when people are using biologics, but I gather these numbers don't change much on the other traditional RA meds and often worsen over time, as they just tend to mask symptoms and don't shoot for the cause. This may be why rheumies feel it is a waste of time to retest with any regularity, possibly viewing it more as an initial diagnostic feature than a valuable tool that reflects patient improvement. Let's face it, your average rheumy doesn't expect RA to just go away and disease course to only to worsen over time with the need to gradually increase med dosages. However, after initial worsening, as described in The New Arthritis Breakthrough, my RF has come down consistantly over the past year from the mid-500s to 44, reflecting my physical progress on AP, and has been very reassuring. My doc has all my bloodwork re-tested every 6 to 8 weeks (CBC, metabolic panel, liver/kidney function, inflammation markers – RF, anti-CCP, cardio-CRP – and immune complex) and, so far, my insurance hasn't so much as squeaked.

The anti-CCP test is described as being “predictive” of disease course, but I tend to look at predictions as being a bit like “guesstimates” that don't necessarily come to fruition. 😉  Pretty much all the literature on anti-CCP is collated from the standpoint of patients being treated with traditional meds and these don't go for the infectious cause. If the microbial cause is gradually contained/removed, it stands to reason that circulating antibodies will eventually be lowered, too.

Anyway, just thought I'd share the rationale that has helped to calm my fears about this test and Donners post, sharing her experience of a gradually decreasing anti-CCP while on AP, is a real bonus to all of us in the same boat. Thanks, Donners!!! Please let us know what your next test reveals!

Peace, Maz

[Time_of_my_Life]

Maz, thanks for helping me to feel better about the high anti CCP.  I'm trying hard to not let the high number get me down.  Knowing that others are dealing with it too  and doing fine on AP helps me feel better.  I find it very discouraging that an RD would make me feel that my situation was hopeless.  She has caused me to have more depression in my life than the actual disease has!  I'm so glad I found this group and such positive people.  I definitely need that in my life right now.  🙂

Lori

[Patti D]

Hi Lori,

I too am new to this board(3 months) and was diagnosed with RA in Dec, 2007. My first post was about my high anti-ccp 221, RF 191. This was when I began my treatment for lyme disease. The 2nd rheumy did my RF and after only 5 days on doxy for the lyme ,my RF had dropped to 141 so I new when I got sick again in December that the only treatment I would take was the minocycline. 2 different rheumy's told me severe disease progression as well based on those 2 blood tests and I literally freaked out. The first Rheumy wanted to use metotrexate so I switched and found this new doc who is using not the Dr. Brown protocol of pulsed dosing but the “dmard” way of mino 100mg 2 times daily. At this point being totally new to this I know why I am taking the mino and if the Dr. thinks something else that is ok with me.:cool: Today I am happy to say was my 3rd appointment with the new doc and All blood work was normal again and I feel so so so much better than I did in December. He does not check the anitccp or Rf but that's ok. It is a diagnostic marker not a treatment. I am more concerned about how I feel now and am going to refuse to base my recovery from these 2 tests. I did worry exactly as you are. I have not been on any other treatment except the mino:roll-laugh: I am happy today is a good day and will continue to be forever grateful for the encouragement from this fine group of experts here on the roadback.

Happy days,

Patti D

[Time_of_my_Life]

Patty… That is awesome news!  I am so glad you posted this and let me know how you are doing.  It truly does give me hope.  I am curious as to how you found an RD who was willing to prescribe the minocycline. What positive things did he have to say about AP and does he prescribe this to all his patients?  I am really struggling at what I will tell my RD when I have my appointment in May.  She was definitely all about treating me aggressively because of my high anti -ccp and wanted to switch me to enbrel at my next appointment.  She doesnt know that I have already been off the methatrexate for over a month.  She is gonna flip out when she finds out.  She told me that because my anti ccp was so high that I had to fight this agressively and that was my only alternative.  Any suggestions on how I can handle this and still have her available to test my levels would be greatly appreciated!

Lori

[Maz]

[user=212]Time_of_my_Life[/user] wrote:

I find it very discouraging that an RD would make me feel that my situation was hopeless.  She has caused me to have more depression in my life than the actual disease has! 

 

Hi Lori,

You bring up a very important point and I'm sure this is something that many here have experienced in much the same way. A Doctor's pronouncements can be critical to our emotional wellbeing, holding tremendous, life-altering power over us. 

A couple of years ago, I was reading one of Deepak Chopra's books and one story he told stuck with me. Chopra was a hospital doc at one time, before turning his attention to spiritual teaching. He talked about a fellow doctor/friend working in the same hospital who had a longstanding hacking cough and whom he tried to get down to X-ray to see what was going on in his chest. Well, the colleague was resistant, saying he was fearful of the worst. Eventually, Deepak convinced him, but his worst fears were realized…a shadow on the lung, diagnosed as cancer. From this point on, the friend who was fine, apart from the cough, quickly deteriorated and, within a month, this friend passed away. As Deepak was going through this friend's medical notes, after his passing, he found an earlier X-ray done 2 years previously and was astounded at what he saw. The same shadow was present, no different in size than the one taken 2 years before, and there had been absolutely no visible progression of disease. Deepak tells this story as an example of how powerful the mind really is over the body, the inference being that medical proclamations such as the ones doctors dole out can have tremendous impact on the progression of our diseases.

I often think about our courageous, fellow scleroderma members here on the BB and the devastation such a diagnosis must wreak on the psyche, being told they have a disease that has no cure and to only expect the worst as time passes. For those who don't know about the hope that AP affords, ultimately the diagnosis becomes a self-fulfilling prophecy. But, for those few who either stumble across this information or courageously won't take this proclamation unto themselves and proactively seek out this as an alternative, hope for remission is given. They are truly warriors who won't allow a medical diagnosis to steal their power. Instead, they step into a power they may not have realized they even possessed, they learn to self-advocate, to do the research, to find the doctor willing to treat them….often in very unwell states of health….and they succeed, examples to us all of living, breathing miracles. 

I think I have shared this before, but Pema Chodron, another author, describes a hero as not being someone who does something great, fearlessly. A hero is someone who carries much fear, but does that something great in spite of the fear. I guess that makes everyone here heroes and heroines! We're all fearful of the medical pronouncements we receive, naturally. We;re only human and to be presented with our mortality on a medical platter is devastating. It's okay to be fearful and there is nothing weak in that. Great strength often emerges out of times of profound fear, yet Doc Brown's legacy is our hope. That guy was truly an amazing doctor….he never once had any litigation against him during all his years of practice and, when patients came to him in the most awful of conditions, he gave them nothing but hope and a simple medicine that would ultimately turn their diseases around. There is no act of kindness greater than one where someone can give so many who are suffering that kind of hope. He really was an amazing guy who truly lived by his medical vow of to “First, do no harm.”….and just as importantly, to do no emotional harm.

You're a warrior heroine, too, Lori :dude:…just look at all the self-advocating and research you've done in spite of your fear. While I understand the fear you hold of your RD's reaction, just gird your loins with the knowledge that her proclamation has no power over you anymore. You've taken your health into your own hands and she is either going to support you or not. If she doesn't provide the service you choose, then it's okay to fire her (I love that expression! hehe!) and move on. Just view any resistance to supporting you as a kind of temporary insanity, where she's lost her way and forgotten her medical oath. 😉

Peace, Maz

 

[Sierra]

You can have joint damage without swelling and redness in the area. It happened to my toe (while on MTX). That is why, in my opinion, X-ray follow-up is so important. My recent X-rays showed no progression since I've been on minocycline. It's working well for me.

Sierra

[Sierra]

Andrew Weil writes about medical pessimism in his book Spontaneous Healing–very interesting information about the power of suggestion especially when it comes from a doctor.

S.

[Author]

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