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Way to go, Maz!!! So glad to hear your news!!!!:D:D:D:D
Like you, I like to see the blood test evidence, too. Way cool that your doctor is just as excited!! Nice when they call you at home!
Congrats!!!
MicheleMaz,
CONGRATULATIONS!!! I am so happy for you. My anti-ccp level was at 59.3, I remember feeling so defeated when they told me that meant I would get hit hard with RA… I imagine yours being >60 , it was terribly discouraging. What amazing and joyful news for you that your road back is evident now in your blood markers, too. Thanks for sharing with all of us. You continue to bring hope and reassurance.
Virtual Hugs and many smiles!:roll-laugh:
Amy
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Hi Maz,
Woo-hoo for you! 😀
You deserve some good news for all your recovery efforts. I agree that it is heartwarming to get that validation from objective lab numbers.
Some of you may know that my SED rate went from 64 (at time of first symptoms of SD) to 27 (after 1.5 years of AP). I believe 21 or under is normal.
Seeing as I have given up alcohol, I propose a toast with sparkling cider. “To Maz, our encouraging friend and optimist”.Great news maz! It is nice to have your improved symptoms confirmed by bloodwork – that is real concrete progress. Glad to hear it!
Maz – your very good news, and it is good news, has left me wondering just what anti-CCP is. It appears to be or may be an antibody to a protein found in rheumatic joints. They don't know why the proteinis in the joints, just that it is in RA patients. This reasonably readable papersays this: “…found that patients with RA develop antibodies to, as yet undefined, proteins containing modified (citrullinated) arginine residues. It has been shown convincingly that the citrulline residues are essential parts of the antigenic determinants recognised by the RA autoantibodies“. So the anti-CCP is a test for an antibody that is reacting to a weird protein, a broken (in their words, de-iminated) arginine. So the good news in your case is that your critters, if such they are, are de-iminating less arginine. I'd buy a cake or crack a beer. Hmmm. Maybe I will.
I googled anti-CCP (result). Strange test. On this pagethe writer gushes “Anti-CCP… is a new and exciting blood test” Ahh, so. Maybe you have to be a physician. From googling it sounds much like RF factor in that they don't know why it is there but it seems to be strongly corelated to RA, which since RA is idiopathic they also don't know why it is there. “When the citrulline antibody is found in a patient's blood, there is a 90-95% likelihood that the patient has rheumatoid arthritis“. I don't think any other clinical test of any sort is that specific for RA so this seems to be more a new definition of RA than a diagnosis of it. Here is the ACR criteria:At least four criteria have to be met for classification as RA.
- Morning stiffness of >1 hour most mornings for at least 6 weeks. [/*:2q4tp2iz]
- Arthritis and soft-tissue swelling of >3 of 14 joints/joint groups, present for at least 6 weeks [/*:2q4tp2iz]
- Arthritis of hand joints, present for at least 6 weeks [/*:2q4tp2iz]
- Symmetric arthritis, present for at least 6 weeks [/*:2q4tp2iz]
- Subcutaneous nodules in specific places [/*:2q4tp2iz]
- Rheumatoid factor at a level above the 95th percentile [/*:2q4tp2iz]
- Radiological changes suggestive of joint erosion
[/*]
So anti-CCP is a numbers thing, a good hard number to indicate that the patient has, what? Well that stuff in the ACR criteria, or at least 4 of them. I guess that is exciting, isn't it? The real excitement for the docs is that if they find anti-CCP then they have legal and ethical and insurance justification to start vigorous treatment. Today that would be biologicals. But I wonder if they appreciate that they are creating a new definition of RA?I hope you don't mind me poking fun at the ACR on your thread. I'm glad that you have fewer anti-cyclic citrullinated peptide antibodies. I hope that you have none at all soon.
john
Jenn…thanks for your sweet words and encouragement!!! Following your progress has been a great encouragement to me.
SuperPerro…you're totally awesome! I don't play basketball…at least not very well, but I may easily join you in a game when we're both back to our old feisty selves!!! I suck at dancing too – no rhythm, but who cares? I won't be able to stop dancing when these ol' knees allow! :roll-laugh: Might be good fodder for America's Funniest Videos, anyway!
Patti…you know, I can't help but think that I may have had elevated anti-CCPs in advance of getting Lyme and it was just the right trigger to set the RA into motion. It just seems strange that anti-CCP can be elevated for so many years and that we may be symptom-free until it explodes into existence. Gotta wonder if this test was added into routine check-ups if antibiotic therapy started early may side-step it ever manifesting. Ahhh…looking back and mulling it all over in retrospect is a fine thing, eh? I have to remind myself sometimes to keep the focus on getting well.
Goodwife, Susan and Michele….so true about the bloodwork…while we all know it's not the be all and end all, it does tend to hold some amount of power of us…maybe one of those projections, just knowing that how our docs gauge things? And, Susan…I'd love to share a sparkling cider with you! Being a tea-totaller (the Brit in me), the cider would be a refreshing change for a good old toast to our health!
Casey…you bet I'll let you know when I'm up. I hope to see GlitterGirl, too, so maybe we can have a little girls' lunch together…would be fun, eh? 🙂 We could all be like a group of old biddies, comparing our body parts that have improved and still ache. What a hoot!
Amy…I have every faith your anti-CCP will come down, too. It's good you've got that “just under the 60” number, so at least you have a good starting point to watch for progress now. I have no idea where mine was above that number…may have been in the 200s for all I know…my RF came down significantly in the first year while on Lyme treatments, so it probably started coming down long before now. Just feels so reassuring to see it under that upper reference range now…:D Although, personally speaking….and this is just speculation….but this test is really so much less sensitive to short term improvements than RF….I think it must be quite possible to feel improvement long before this test actually reflects it…especially since reading that it can be positive for many years before disease manifests physically.
WOW! I really feel like I'm at a party and it's my birthday and everyone is coming to celebrate with me. Thanks everyone…you're all the BEST! I just wish we really could all meet up in one room to really get to know one another.
Peace, Maz
[user=3]John McDonald[/user] wrote:
I hope you don't mind me poking fun at the ACR on your thread. I'm glad that you have fewer anti-cyclic citrullinated peptide antibodies. I hope that you have none at all soon.
Hi John…not at all…I always enjoy your posts and out of the box thinking. I can't always keep up with it, but it's fun to try!
I agree this is a very odd test, especially in light of the fact that it appears it can be positive for many years prior to onset of physical symptoms…(pathogens) smouldering away quite happily until some “wind” catches the embers. As it is an antibody test, as you say, I can't help but wonder if these CCPs are just outer surface protein signallers on the causitive infectious organism(s). Perhaps the most telling line quoted in your post being:
“It has been shown convincingly that the citrulline residues are essential parts of the antigenic determinants recognised by the RA autoantibodies“.
So, as far as I can tell, whoever wrote this is basically admitting that there is some antigenic substance being released from these “citrulline residues”….perhaps I'm being simple-minded here, but could these be Dr Brown's mycoplasmal antigenic substances?
Peace, Maz
I like your earlier comment that maybe they should start antibiotics the moment they see elevated anti-ccp, before any (or many) other symptoms present. It would be interesting to see just how many such patients would herx.
You are aMAZing.
Great news MT – am really happy for you. Have been down to see my doc and so exhausted that have been off the air for a couple of days. You can see what kind of regard you are held in from all the response posts, just wanted to add mine. Lynnie
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)Awww:blush: …thanks, La G, but you know those same words are what I would speak to you. You're a fountain of wisdom and inspiration. I know…I get mushy sometimes…Aussies aren't into mush as much…or are they? :roll-laugh:
Looking forward to hearing how your double doc visit went when you're rested and do hope it was all helpful and that you had similarly good news.
Peace, Maz
Never been much into mush (how did you guess that????). Probably one reason why I fitted in okay when I came here!!! My news has given me lots to reflect on. Possibly not so good. Just want to sit with it for a while before I share. Lynnie
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)[user=27]Maz[/user] wrote:
Hi All,
………………Well, my doc just called and left a voice message early this morning (while I was still snoring away) and was excited to share the news that my anti-CCP had come down in the past 2 months…from somewhere above 60 to 45!
…….These improvements mark my 7th month anniversary on AP.
Maz, congratulations on this good news — nothing like positive findings to further encourage us! Thanks for sharing. I look forward to hearing “the rest of the story.”
AF
Maz,
Great news. So happy for you. You work very hard and it pays off. You are an inspiration to me and to all of us!
JB
[user=30]lynnie_sydney[/user] wrote:
My news has given me lots to reflect on. Possibly not so good. Just want to sit with it for a while before I share.
Lynnie, very wise to sit and reflect for a while. We're all here for you if/when you want to share. Till then, I'll be holding you very much in my thoughts.
Peace, Maz
Thanks JB and A Friend…you've both been such great friends to me over the months!
I called and left a voicemail with my doc today and requested a copy of my bloodwork, which hubby will pick up later in the week, as his office is just up the road from the doc's. Will fill in the blanks then.
Peace, Maz
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