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So I am recently dx RA. I started having arthralgia in my hands and feet with no swelling or redness at the end of March. My primary care doc ran tests and it came back ANA positive, sed 54 and RA 16 (normal 0-14). I went to see a Rheumatologist May 10, and she told me it didn’t look like RA as i only had arthralgia in a few joints in my hands and feet. In that 4 weeks from my PCP to get into the Rheumatologist, I went gluten, dairy and sugar free. Anyway, she re-ran tests and my RF was down to 14, Sed dropped to 16 (norm 0-20) and my CRP was normal at less than 5. She did run a CCP which came back at greater than 250. She started me on plaquenil. I went to see Dr. K in Texas, and she started me on minocycline last week. I still have aches in a few fingers, and I am hoping my meds will head this thing off before it is out of control, but the high CCP scares me. Everything I have read says with high CCP, it’s aggressive, and I have seen comments on other sites that AP doesn’t work on those with CCP antibodies. Restless nights and depression. Is it normal to feel so scared? I worry about being disabled. I’m probably overthinking it. I have a supportive husband, but he doesn’t understand like the people here. I keep telling myself nearly 9/10 people have long term success with this, but I’m not convincing myself. Would love to hear if anyone else had success with the high CCP. Just need some words of encouragement.
Everything I have read says with high CCP, it’s aggressive, and I have seen comments on other sites that AP doesn’t work on those with CCP antibodies. Restless nights and depression. Is it normal to feel so scared? I worry about being disabled. I’m probably overthinking it.
Hi Nikkoal,
It’s very normal to be scared and even to be in denial when getting a diagnosis of an aggressive autoimmune disease! You are in good company here as we can all probably equate with those feelings, as life can be turned upside down by chronic pain and the fear of potentials.
Not sure where you heard about anti-CCP folks being non-responsive to AP! Actually, it’s one of the markers that has been correlated to p.gingivalis (gum disease) in the scientific literature, which points to tetracyclines being a fabulous treatment, as they are used for gum disease that also leads to tooth decay and bone destruction that is very similar to the bone/joint destruction in RA. The teeth are a part of the skeletal system, so this makes very good sense.
Interestingly, the iceman, Otzi, was found to have trepenoma denticola (an oral spirochete) in his hip joint! So, these bugs do migrate around the body and in all likelihood, travel and gravitate to areas of the body that are similar to the point of origin. Here is an old discussion thread you might find interesting to read through, particularly the links to articles/research:
https://www.roadback.org/forums/reply/re-positive-ccp-and-ap-4/
The very hopeful thing in your case is that you have started AP early in your disease, so there is also the hope that your response will be positive, remembering that AP is a slow therapy with no overnight miracles and early worsening (in both symptoms and labs) can be expected.
One antibiotic I found helped to bring my anti-CCP was a penicillin, called Moxatag. It was so incredible, bringing my number down by about 40 points a month over the course of about 10 months to near normal. My Lyme doc, however, also added Diflucan to this protocol, which helped to prevent candida overgrowth but is also a helpful treatment for Lyme.
Hi, Nikkoal. I was diagnosed with RA a year and a half ago with similar symptoms as you as well as similar test results. Initially I only had a very high anti-CCP. The RA factor was negative and my inflammatory markers were normal. I had pain in only a few finger and toe joints. Two rheumies I saw characterized my condition as mild.
Both rheumies were willing to give me an Rx for minocycline, but neither was a believer.
I, too read somewhere that a high anti-CCP Usually indicated aggressive diseae, and believe me I was scared all the time.
After a bit of time, I came to see that it’s impossible to predict how the disease will progress, however I could see that my symptoms were nowhere near as severe as many forum members, so that helped me relax a bit.
My anti-CCP has so far stayed the same, but my inflammatory markers went up then came back down.
Try to live in the moment, and not worry about tomorrow or next week or next year. Try to rejoice when you are able to do normal activities, and most importantly believe in AP, and stay the course.
PM me if you want to talk further.
Karen
Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.Maz and CurlyinNC,
Thank you so much for your replies. Being new to this really hits hard, as I am sure you know. Just reading stories on the internet about some of the struggles people have with RA is hard. It’s very overwhelming. And so many threads with people still struggling. I’m trying to focus on the good. Thank you for your support! Means so much to me.
Hi Nikkoal
Can understand how you’re feeling. But your anti-CCP results have done you a favour. Had you only had the few symptoms, RF and CRP results to go on, your docs (and you) may have decided that you were not dealing with rheumatoid and let it go without addressing it until much further down the track. As it is, you have begun treatment early, which is really good – particularly in terms of response with an AP approach. Plus you have one of the most experienced AP Docs on your team so you are in great hands.In my own case, my anti-CCP has always been over 600 since first testing. This marker doesn’t seem to change much for me, though RF does. I have been dealing with my rheumatic disease for just under 30 years, I have been on various AP protocols for 13 years and, like you, am gluten, dairy and sugar-free. I am well for most of the time and have no joint damage. Genetic markers/predisposition don’t have to determine outcomes 🙂
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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