Friday, October 24, 2014

Wednesday, June 08, 2011 JJ, Community Member, asks

Q: Anti-CCP levels

I was diagnosed with polymyalgia rheumatica in January.  The rheum called me a "classic case."  Then my blood tests results came back and the anti-CCP was in the mid 200's.  My dx was changed to RA.  The anti-CCP was repeated about 2 weeks after the first one and came back at 156.  I started on prednisone and methotrexate....tapering down the prednisone until I was finally off it.  As I got off the pred, my symptoms got worse and the rheum started pushing biologics..even though I was clear that I wanted to try all traditional options first (like triple DMARD).  All this time, my symptoms were very PMR..no swelling at all, in the large joint areas and feeling like muscle pain.  My x-rays show no erosions.  My hands and feet are no involved.  The rheum keeps ratcheting up my RA drugs, but i think I have PMR.  Maybe the anti-CCP means risk in the future for RA, but I don't think I have it now.  The rheum must also be wondering, because he repeated my anti-CCP this month, June, and it is only 22.  Does the drop in the anti-CCP mean anything?  Should I be getting a second opinion?  I have gone back on 5 mg prednisone and it has caused my symptoms to diminish greatly

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Answers (6)
V, Health Guide
6/10/11 7:40am

Hello, Janice. Autoimmune diseases are so difficult to diagnose.  Blood tests help to confirm sometimes, but they are not the determining factor.  30% of people with RA have normal blood tests.  I am one of them. Where to you have joint pain and swelling? You may be in a transition period, and you may have more than one autoimmune disease, as this is not uncommon.  You might find the following information helpful:  What Your Rheumatoid Arthritis Lab Results Mean

 

If your are feeling uncomfortable with your current doctor's diagnois and treatment, it may be time to seek a second opinion.

 

Blessings,

V

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JJ, Community Member
6/10/11 8:05am

I don't have any swelling and the doctor has never detected any swelling.  I have pain in my upper arms, thighs and sometimes knees.  At the outset I had pain in my neck and cervical spine, but that's mostly resolved.  It isn't just the change in the blood test, but that my symptoms are exactly what is described for PMR and what PMR sufferers describe.  The doctor admitted that my diagnosis is based on the anti-CCP blood test.  So, if it goes down 3 more points and becomes negative, does that mean I don't have RA anymore?  That doesn't make sense. But I just don't feel like I have active RA right now and to keep escalating RA treatments doesn't feel like the right thing.  However, I also don't want to be one of those people who is in denial about RA either.  The past 6 months, since I have been dealing with this, have been tremendously stressful....and the doctor says avoid stress...ha ha.  I see the doctor again in July and I think I will try to pin him down on explaining exactly what supports the RA diagnosis.  I almost feel like he and I have become adversaries.  He says he understands I want to try all alternatives to biologics before going to biologics, but even one week after my last visit, when we had agreed to wait 3 months to talk again about biologics, his nurse calls me with the blood test results (showing inflammation because I was off pred at that point) and says the doctor wants to talk about anti-TNF's next time (which is 6 weeks, not 3 months).  Sometimes I wonder if he even remembers what we talk about....or if he forgot I was coming back in 6 weeks.  Either way, it make me mad that was being brought up again.  I haven't even tried triple DMARD! Currently on MTX injections (I suggested going from pills to injection to see if it works better) but having to reduce to 6 ml from 8 ml due to liver test levels and doxycycline (at my request). Also folic acid.  Had been at zero pred, but now on 5 mg. It has reduced, but not eliminated, my symptoms.  Tried suflasalazine with MTX for 3 weeks, but the doctor said it wasn't working and to drop it. When I was at 10 mg. pred I had no symptoms.  I don't want to be on pred.  I know it is bad, but if that is the treatment for PMR, I don't need to abandon it for RA treatments if my symptoms are not RA. 

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V, Health Guide
6/11/11 7:48am

Hi, Janice,

 

I see your dilema, and I agree with you.  Have a talk with your rheumy about why he thinks you have RA, and why he is pursuing this line of treatment.  If he doesn't give satisfactory answers, I think it is time to seek another opinion. Honestly, I have never known anyone with RA who did not have swelling.  Your tests indicate a lot of inflammtion, though, so you apparently have some sort of autimmune disease. Perhaps your doctor knows something is going on, but is not exactly confident of the Dx, and wants to head off any major problems that could be caused by all of the inflammation you are experiencing. 

 

Best Wishes,

V

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JJ, Community Member
6/11/11 10:27am

Thanks for the response.  I have been taking methotrexate and maybe that, like you said, is heading off future problems.  I am okay with that.  I am willing to keep taking it for now.  But moving to biologics...I understand they are a godsend for some people, but they have major risks.  My rheum admitted he had a patient who got MS while on Enbrel and others who ended up hospitalized with major infections.  It's not something I want to take unless it is absolutely essential.  I know doctors are trained to detect swelling we might not be able to, so I flat our asked him at the last visit if I ever had any and he said no. He told me to touch my knee to see how it was cool.  He said if there were swelling it would feel hot.  If the doctor and I do not get on the same page on the next visit, I am looking for a second opinion.  I know something is wrong with me.  I just want to be sure we are treating the right thing.  I am posting on the net and hoping someone has had an experience like mine.  I feel like a lone wolf right now with an atypical situation (if anything in RA can be considered typical!).  Thanks for your support!!

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V, Health Guide
6/11/11 12:10pm

You just hit that nail on the head, Janice.  RA is anything but "typical".  How much MTX to you take a week, and how long have you been on it? Seems as though I have read there are over 100 types of autoimmune diseases.  Did you have a chance to read Lisa's post on the the types of arthritis? 

 

I hope you get some relief and answers soon!

 

V

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JJ, Community Member
6/25/11 7:47pm

I have been on MTX since I was diagnosed at the end of January.  I just reduced from .8 ml to .6 ml due to elevated liver numbers...which came back normal just this past week...so they went down immediately upon the MTX reduction.  I just took my second does at .6 ml and it doesn't appear to have made me feel any worse.  In fact, I have been feeling better.  I am also swimming 4 or 5 days a week and I think this helps a lot.

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Monica, Community Member
6/21/11 11:06pm

I am in the same exact situation.  I have NO symptoms of RA except the Anti CCP is coming back positive.....a very low positive.  All my symtoms point to PMR.  I pinned her down today and she said, "I do not believe you have PMR, it is RA".  The funny things is the RA factor is at a 7 and if I had RA it would be at a 20+.  After today, I was convinced I had to get a 2nd opinion.  I am actually going to Shands this coming Monday.  Good luck.  I hope you get better. 

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JJ, Community Member
6/25/11 7:49pm

Good luck to you, too. I will see my doctor in mid-July and I will share what he says.  I am also going to say I think I have PMR, but I expect the same reaction that you got from your doctor.  

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Lene Andersen, Health Guide
6/15/11 12:54pm

I can understand your frustration. The thing about RA is that it can be hard to pin down, especially in the beginning a can sort of come and go. The anti-CCP test is relatively new and is very exciting because it is very accurate. When it's positive, 80-90% of the people who test positive have RA. The reason it's exciting is that it is positive up to 15 years before someone develops RA and rheumatologists believe that it will in the not-too-distant future lead to a situation where people can be identified before they get the disease and that will make it possible to with new meds turn off RA before it starts.

 

If your anti-CCP is positive, but you don't yet have any erosion, it may be that you are in the very early stages of RA. You mentioned that your x-rays do not show any joint erosion. Studies indicate that an MRI will show RA damage up to six months before they appear on x-rays, so you may want to consider asking your doctor for an MRI.

 

To be honest, it does sound to me as if you may be in the early stages of RA, but if you would feel more comfortable getting a second opinion, go for it. Remember, though, that the sooner you get the disease suppressed, the better the chances that you won't develop any joint damage and that's the goal. To protect your body from damage that could lead to deformity and disability.

 

And that brings me to my next point. Traditionally, rheumatologists treated RA using a pyramid of treatment. The key word was to "go low and go slow" - you started with the less intense drugs, waited to see if they worked, if they didn't, move up the pyramid, etc. The problem with this approach is that it leaves your RA free to do all kinds of damage in your body. The Biologics has enabled us to actually go into remission and has therefore change the treatment approach to one of early and aggressive treatment to achieve remission.

 

Lots of stuff to think about and I would recommend you do some more research. Check out my post on an RA forum on new treatments for RA for more information about anti-CCP and treatment approaches. You may also want to check out the Langone Medical Center's webinar about RA, which touched on many of the same issues as the forum did, but add some fascinating permission about potential development and causes of RA.

 

Good lcuk! Please keep us posted on how things go?

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JJ, Community Member
6/22/11 1:19am

Thanks for the response!

 

You have stated the same contradiction I plan to ask my doctor about.  Yes, I have read that anti-CCP can be positive years before RA develops (trust me, I have read just about everything on the internet about this test and about RA). So, if the anti-CCP is positive, it does not necessarily mean "early RA."   It can mean risk of future development of RA. I see that as a significant difference and should be taken into account when determining treatment.  PMR is not treated with biologics and a positive anti-CCP without symptoms would not be treated with biologics. 

 

Please tell me what symptoms I have described that you would see as "early RA" and not PMR.  I know they can be similar, but I have read the rapid response to pred is a means to differentiate.  I went from hardly being able to walk to walking freely within 48 hours after just two doses of 15 mg. prednisone.  What do you see as more characteristic of RA? This is what I need to understand.  RA is a clinical diagnosis...it can't all rest on the anti-CCP.  By the way, I am RF negative.

 

I understand the treatment approach.  I am on MTX and have been since February when the doctor said RA.  I wasn't someone who stuck their head in the sand over this.  It's taken me 6 months of dealing with this to really get convinced my symptoms are PMR right now.  I am on .6 ml MTX (just reduced from .8 due to adverse liver tests), 5 mg. pred, 20 mg. doxycycline and folic acid along with Vit D, fish oil, calcium and a multi-vitamin.  I would say I am now 95% symptom-free with just occasional minor stiffness (less than 1 minute) when standing after sitting for a long period of time.  

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Lene Andersen, Health Guide
7/14/11 11:52am

keep in mind I'm not a doctor, just someone who's lived with this disease for a long time and was managed without quite a bit of information to my work for MyRACentral. I did some checking on PMR and in many ways it sounds as if PMR and RA can be at times difficult to differentiate, especially in milder or earlier cases and those who are seronegative. I know many with RA who have had a rapid response from prednisone (including myself), so to me, that doesn't necessarily differentiate between the two. As well, given that you're on methotrexate, it could be that it is controlling your RA (if it is RA) sufficiently and that may be masking some symptoms that could give you more  a definitive diagnosis.

 

As well, damage doesn't  show up on x-rays for while - studies have shown that damage will show up on an MRI six or more months before it shows up on an x-ray and given that your disease (whatever it is) appears to be control, a potential damage has been stopped. How old are you? that may help differentiate, as well.

 

I'm a big fan of trusting your gut. If your instincts tell you that it is more likely your PM are then RA, then I'd generally support that. It might be worth getting a second opinion - third opinion? - to explore some options. It may also be worth it to have an in-depth conversation with your doctor about why he believes RA rather than PMR.

 

keep us posted, please?

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JJ, Community Member
7/14/11 12:42pm

I am 54.  I actually just saw the doctor yesterday.  He thinks RA, but he said more than once "you are not typical."  One thing he mentioned was how high my SED rate went when I got off pred, which he says he doesn't see it go up like that in PMR.  We reached an agreement to do the following:

 

1.  Taper off prednisone much more slowly.  I am on 5 mg. and will try to go to zero over the next 6 months.

2. At my request, we changed the doxycycline from 20 mg. a day to 100 mg. 3 days a week as I read pulse therapy works better.  He said it helps with side effects (not that I have any).  Since I also went back on pred at the same time I started doxy, I said it is hard to tell if the doxy is helping, but the doctor said, yes, it is helping.

3. Keep MTX at .6 ml (although by the time I get the air out of the syringe, I am usually closer to .5 ml.). I am okay with MTX for now because I know the newer thinking is, if you have an anti-CCP positive, the early MTX could help prevent or lessen the severity of RA in the future, even if you don't actually have RA yet.

 

If I get off pred and stay stable, in 12 months he will repeat the anti-CCP and work with me to see if I can get off meds (at first he said 2 years, but then said we could try at a year).  That is a concession for him, because he always said I would be on meds for life.  I was satisfied with this plan.  Of course,  all depends on my blood test from yesterday and what that shows, but I don't have any symptoms right now so I know it has to be better than last time. So, maybe I will be on meds for life, but I want to know that for sure.  Also, I am VERY glad I resisted the biologics, because I have gotten to a good place without them.  I believe in trying conventional therapy first and that has worked out for me, for now at least.  But, if I had just gone along with the doctor, I would already be on Enbrel.  I guess I have learned you need to educate yourself, listen to your body, listen to your doctor, put it all together and be your own informed advocate.

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Lene Andersen, Health Guide
7/14/11 2:42pm

user and you have learned to be a good advocate for yourself! And it sounds as if you have a doctor who is willing to work as a team and that's good. Very good. The plan sounds like a completely reasonable one and I hope it works for you.

 

One note. I have recently learned that when you go off methotrexate, you have to taper incredibly slowly. If you don't, it's very common to get a horrific flare if you have RA. Which we don't know if you have yet, but just in case, you don't want that kind of flare. I had one and it was the worst one I've ever had in the past 40+ years.

 

Give us posted on your progress, please?

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JJ, Community Member
7/14/11 5:15pm

Thanks and I will watch out for that. When the rheum said he would work with me to try to get off the meds, I figured it would take time and a good plan. I learned from trying to get off pred the first time, sloooowww change is best!  But, first things first...get off the pred and show some stability!!

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JJ, Community Member
4/21/12 9:47pm

I stopped MTX cold turkey in January.  The old rheum said taper (by then he was finally  questioning his own diagnosis of RA), but I was switching rheums and I felt it was messing up my liver, so I just stopped.  It didn't make one bit of difference, I never had any kind of flare.  I think this is just another validation that I never had RA.

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JJ, Community Member
1/28/12 9:44am

Update:  One year into this and I have never developed the typical RA symptoms....no swelling or small joint involvement. My persistent symptoms are upper arm aches and upper leg tightness....mild stiffness after sitting long periods. I don't have joint pain.  I now test negative for RA....RF is 7 and anti-CCP is 20.  I have been on prednisone, MTX and doxycycline. The anti-CCP has steadily gone down over this time; it has not fluctuated up and down.  

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JJ, Community Member
4/21/12 9:44pm

I have a new rheumatologist and I am no longer diagnosed with RA. My anti-CCP is now negative.   I no longer take MTX.  I stopped taking it in January.  I am tapering and almost off prednisone and then I will be drug-free.  Moral of the story, ant-CCP is NOT definitive for RA.  If your symptoms don't support the RA diagnosis, question the diagnosis even if you have a positive anti-CCP.

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SW, Community Member
9/21/12 3:48pm
Hi. I am a 39 yr old female and was just diagnosed with RA after my anti ccp came positive (66). The reason for the tests was not even joint pain but rather some low grade fever that I had last month. The investigation of that brought up a positive ANA and that finally led me to a rheumy. My symptoms however are occasional joint pains in lower back, and now neck pain, which the rheumy dismissed as unrelated to ra. No fingers wrists or feet involved. However now I feel I have to sit and wait until I develop ra and that's when the doctor says he will put start me on ra treatment. It was so heartening to read on this thread that positive anti ccp may not point to definite RA if there are no such symptoms. Any piece of advise anyone? I'm terribly scared. Reply
JJ, Community Member
9/21/12 5:33pm

I was diagnosed with RA in January 2011 based on anti-ccp of 214. I saw the diagnosing rheum for a year until I got frustrated with the feeling my symptoms did not match his diagnosis of RA.  Here is how my anti-CCP went:

 

January 2011: 214

February 2011: 168

May 2011: 22

January 2012: 16 (considered negative)

April 2012:  10 (considered negative)

 

My current rheum says I do not have RA.  I am on no medication other than an OTC painkiller for my shoulders...which may be due to swimming.  In fact, I just saw the rheum 2 weeks ago and she said I can come back in 6 months if I need to, otherwise I don't need to go back.  I believe my anti-CCP was from a virus and the rheum said it can be.  I think I had PMR.  Unfortunately, there is a perception that a positive anti-CCP means RA, but that is not 100% the case. None of us knows what the future holds.  My advice would be to try to live a healthy life and worry about any symptoms when or if you ever develop them. I know it is scary to be told you have a chronic illness or are destined to suffer from one.  I was told I would be on meds for the rest of my life.  Ha ha...fooled him!  :-)  

 

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JJ, Community Member
9/21/12 7:40pm

I wanted to add that you need to keep yourself informed.  Be prepared to question anything that doesn't make sense to you.  With the Internet, we can be informed patients.  I had the courage to question my doctor because of what I read on the Internet.  When I was diagnosed, I scoured the net and read everything I could find on anti-CCP.  What I learned is that RA is a clinical diagnosis.  It is diagnosed based on symptoms.  There is no blood test for RA.  Anti-CCP is highly suggestive of RA, but it is not conclusive.    I also vowed to do whatever I could to maintain my health.  I went and took swimming lessons and started swimming laps. I started yoga.  Both have been very beneficial to me.  I was scared, too.  i feared losing my ability to work, to exercise, to enjoy life.  So, I know how you feel.  It is all a shock.  But things have worked out for me and I hope they will for you, too!

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SW, Community Member
9/22/12 9:14am
Thanks a lot. For now I'm trying my best to stay positive as I have gone through a lot of stress in the last one year, for different reasons. My mom got diagnosed with breast cancer in June and then all this about my own health. I feel the stress is getting to me more than anything else. Anyway I hope and pray that my anti ccp follows your example and ends up negative on its own. I have no clinical symptoms of RA as of now, and there has never been any swelling. As I mentioned, we stumbled upon these tests while diagnosing for an unexplained low grade fever (which I figured out later was a faulty thermometer error). My ANA came out 1:1280 which was alarmingly high. When the test was repeated after two weeks it came out 1:320. So I guess these tests can be quite moody.😄I will stay in touch and keep updating. It helps a lot to get support from someone who's been through exactly what I am going through right now. Reply
JJ, Community Member
9/22/12 10:09am

My initial referral to the rheumatologist was also because of a high ANA  of 1:160 and  SED rate of 110.  I was never a person with health issues before all this, so I was surprised at how much of a guessing game it is with anti-immune disorders. There seems to be more that doctors don't know than what they do know.  I hope you are doing something for yourself to help deal with the stress.  For me, exercise has been so helpful.....just got home from swimming laps for 40 minutes at the gym.  If you do end up with RA, many people have it very well-managed.  It isn't like it used to be, where so many people ended up crippled.  So, don't read anything about RA that is more than a couple years old. It will scare the heck out of you for no reason, because things have changed.   Wishing you the best outcome!

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Jman, Community Member
9/24/14 3:44pm

Hi JJ and thanks for your great and informative post.  I’m very glad to hear you are doing well.  I was so surprised when I read your post because it sounds so similar to my situation.  I am also having the pain and stiffness in the large joint areas and I was diagnosed in January with hyperparathyroidism.  My stiffness and pain is in the muscles and I got to the point where I could barely walk and in June. 

 

This was right before my parathyroid operation that my endocrinologist put me on 10 mg prednisone daily.  It worked immediately and I was able to walk normally again.  Hyperparathyroidism and PMR both share the same symptom of muscle pain and stiffness but she said she suspected that I also had PMR in addition to the parathryroid symptoms because I tested a bit high on the sed rate…  44.

 

The parathryroid operation was a success and I continued to take prednisone until I went to a rheumatologist that she recommended in September. He tested me for RA and it turns out I have an anti-CCP of 114 but a negative RA factor.  He is tapering me off prednisone and will retest the anti-CCP and RA factor after I’m off. 

I believe my rheum will wait until I have my first flare up to put me on methotrexate but I’m wondering if maybe we should be more aggressive and start sooner to lower my anti-CCP.  I noticed that you also were using antibiotics.  Did you think that played a role in your improvement?  I am doing the alternate therapy stuff like you, fish oil, vitamins, and exercise. 

 

You have given me some hope although I know you may be one of the small percent that the anti-CCP test is incorrect for.  Incidentally I have never had a flare up (knock on wood) and I have never had any joint swelling.   I am currently down to 2mg of prednisone daily and I do have some stiffness and pain in my large muscles, upper thigh and shoulders but I am far better than I was 3 months ago.

 

Do you think it was good to go on the meds like you did before having a flare up or swelling?  I had a large kidney stone earlier this year that had to be surgically removed and now one of my kidneys is functioning poorly.  The other is fine but I’m still a bit worried about the effect of the drugs on my kidneys.

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JJ, Community Member
9/29/14 9:18am

I am sorry you are going through these health challenges!  I am still doing well, thank goodness.  I am not one to advocate for methotrexate as I should never have been on it.  By trying to force me into higher doses of MTX and get my off pred, my rheumatologist caused me needless pain and suffering.  The treatment for PMR is prednisone.  The goal is to minimize symptoms while you wait for the disease to burn itself out.  The other goal, of course, is to get by on as little pred as possible, since it is so destructive.  The proof that I never needed MTX was clear when I stopped it cold turkey and it didn't make one bit of difference in how I felt.  I do not believe MTX lowered my anti-CCP.  I don't think it did anything for me.  Now, the antibiotic regimen was something I chose to try when I thought I had RA.  However, I know that my PMR was sparked by a viral infection. Did the antibiotic help shorten the duration of the PMR or did my disease just run its natural course?  I am not sure.  I suspect the antibiotic helped, just from what I read on microbial activity in the body....but I don't know for sure.  When I was struggling with my diagnosis, the one thing that kept ringing in my ears was something a Canadian doctor said in a lecture I saw on the Internet.  He said he would never diagnose RA without swelling.  Since I didn't have swelling, that statement gave me the courage to finally switch doctors.   It has been 2 years since I needed to see a doctor and even longer since I have been on any prescription meds.  I continue to exercise regularly...if anything good came out of my ordeal, it was the commitment to keep up with that.  In fact, I was at the gym this morning at 4:45 AM to swim laps before work.  I urge you to try to keep moving......yoga, stretch classes...most of all swimming or water exercises.  It is amazing how movement that hurts on land is so much easier in the water.  It truly helps and will help you stay on the lowest dose of meds possible.  I wish you luck and hope you find answers and relief!

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Jman, Community Member
10/ 7/14 2:28pm

Thank you JJ for your suggestions.  It's good to know I shouldn't push my rheumatologist to put me on the Methotrexate.   He has mentioned it several times so I think he might be willing to put me on but I think you are right and it is better to wait until I get swelling, if ever.  Thanks also for the motivational words to get in the pool.  I think that will be very helpful if I can get through the shoulder pain.  I tried swimming last summer and could only do a couple laps of sidestroke due to the shoulder pain and stiffness.  But I guess a little is better than nothing.   JJ, keep up the great regime you have going and I will post back if anything significant changes.  

 

I have finished tapering off prednisone.  I'm definitely experiencing more muscle pain and stiffness than when I was on steroids.  However it is nothing like before I started to take prednisone.  At that time I could barely walk.  Now it's mostly pain when I get up after sitting a while.  I'm going to try to stay of prednisone if possible.  I'm having my anti-CCP test again in a couple weeks.

 

Thanks again JJ, Best wishes!

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JJ, Community Member
10/ 7/14 2:55pm

It took months after stopping pred for all of the stiffness to go away.  My shoulders were particularly bothersome....really the last part of me that felt completely well.   A trainer at the gym showed me some exercises to do with rubber tubing that helped a lot.  Google "shoulder extension",  "shoulder internal rotation" and "shoulder external rotation" with "rubber tubing."   Good luck!!

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By JJ, Community Member— Last Modified: 10/07/14, First Published: 06/08/11