My Progress

[CurlyinNC]

It’s been a long while since I posted on this forum, and thought it was time that I posted an update in an effort to encourage others who may be struggling or new to the therapy.

My latest CRP showed no measurable inflammation. We did not repeat the anti-CCP at this visit. Of course, I knew that I had improved in lots of small and subtle ways, but the lab test provides further concrete evidence.

I certainly have a way to go to remission, but my doctor feels I’m doing extremely well.

As I look back on the last year, I can hardly believe the improvements that I’ve had. My mother had hip replacement a year ago, and I found myself having to make my first long car trip since diagnosis. Even though I stopped several times, each time my joints were so stiff, I had difficulty walking. Fast forward to a year later, I am still stiff after sitting in a car, but the stiffness passes after a few steps. I can ride for much longer periods without having to stop.

I am able to do more in Yoga class without pain, and have graduated from chair Yoga to Yoga on the mat. I have returned to playing piano and organ, and can once again walk recreationally. Before RA, I was walking 3 miles a day, and am now doing 2.5 – 3 miles several days per week.

This is not to say that I don’t have pain and stiffness, because I do. It’s just much less than it was even a year ago. I went from having painful feet, knees and hands to mostly stiff fingers w/ minimal pain. In the last 4 months, I’ve reduced my NSAIDS usage from once per day to once every 3.5 days. My doctor thought this was incredible.

Certainly the progress has been slow and at times undetectable, but I never considered changing treatment options. That’s not to say, that I was never discouraged, because I was.

My hope is that those who are new or struggling can glean some measure of encouragement from my experience. This forum has been invaluable to me, and I thank all those who have encouraged me along my journey.

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]

Karen, that’s fab news! Thank you for your update and am sure it will encourage and inspire many others!

[Nikkoal]

That’s great to hear! Let me say, I needed to hear that. I saw my Rheumatologist today, and she said I am doing much better than 3 months ago. I have been on plaquenil for 12 weeks and Minocycline for 10. I feel much better, but of course 2 steps forward, 1 step back. I was having a down moment, though, today, reading about CCP antibodies and it being a predictor of severe, erosive disease. I am CCP positive, RF negative. I was starting to have my doubts about anything slowing this runaway train, but I see many people who have achieved low disease activity or remission with AP! Made me feel much better and confident. My stiffness has resolved, and I can make a fist with my hands. I still have pain in joints, but I started AP before any joint swelling occurred (knock on wood!) Thank you for sharing!

[Linda L]

Curlyin, It’s a wonderful news to all of us.
I have a question to those who know more than I do – how is it possible that someone has RA, feels bad and RF is negative? Mine is very high.
Linda L

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[lynnie_sydney]

Linda – see general info here about RF and Anti-CCP

Does this test tell me how severe my arthritis is likely to be?
As a rule patients who are seropositive for RF and/or anti-CCP are more likely to have more severe RA but neither of these tests can accurately predict the future course of the disease in an individual patient.

http://www.nras.org.uk/seropositive-seronegative

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)

[lynnie_sydney]

Nikkoal wrote:

I was having a down moment, though, today, reading about CCP antibodies and it being a predictor of severe, erosive disease. I am CCP positive, RF negative.

Nikkoal, see the quote from the above post to Linda. “Neither test can accurately predict the future course of the disease in an individual patient….”

Try not to buy into the CCP prediction. All predictions are based on statistics and one-size-does-not-fit-all. My anti-CCP result is always >600 to >700, awfully high numbers, though my RF has bounced up and down much more. I’ve been dealing with this for 29 years and have been on various ABX protocols for over 13 and (with the exception of one stubborn knuckle), I have always managed to stay ahead of – or reverse – the RA each time it has affected my smaller joints.

It’s very early days for you – and am glad you are seeing some good results 🙂

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)

[Linda L]

Thank you Lynnie. How far is the medicine from perfection. And it so with any disease. There are answers and at the same time no answers. Very frustrating but we must live with it.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Linda L]

I have checked the copies of my blood tests. It seems that my doctors have never requested Anti-CCP tests. They always request ESR, CRP and ANA.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Airen]

Hi Karen! I am so happy to read your post! You have made great strides and I am certain you will continue to do so. This is wonderful news!!!

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[Calida]

Thanks for sharing, Karen! It’s inspiring to read about the middle of the journey, before remission, to understand the process and keep the rest of us moving forward.

Linda, my husband had a high CCP and RF a few years ago and is still doing great on only LDN so I stopped worrying about the CCP. I began to suspect it was not the dire prognosis I thought it was so many thanks to Lynnie for calming my fears. Still wish he would start AP as the Graves and RA are lurking in the background but he doesn’t want to rock the boat just yet as he has no symptoms of either.

Best always,

Kelly

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Linda L]

Thank you Calida.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[lynnie_sydney]

Linda wrote:

I have checked the copies of my blood tests. It seems that my doctors have never requested Anti-CCP tests. They always request ESR, CRP and ANA.

Linda, I never had a baseline Anti-CCP taken either. For years it was inflammatory markers and just RF. I think the first time was around 4 or 5 years ago. The test is newer in Australia and is still not always routine here. It was available in the U.S. much earlier than here. So, in some ways, it is difficult to gauge anything from it when it’s taken later on as there is no baseline reading to compare later results to.

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)

[Linda L]

You are right Lynnie. Is it worth to ask for this test next time?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

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