AS and bone formation | Arthritis Information
Interesting - wonder what their CCP levels were doing?
Pip
Actually most AS patients have normal CCP levels no matter how severe their disease is, many have normal SED rates too.
TNFs have been the only medication that has provided any relief from the terrible pain of AS. MTX does nothing so they have been living with only NSAIDs.I know of AS people on Mino - just a thougth Anna.
Pip
Gosh, you have to constantly market your program don't you.
Personally, I think it is criminal for for people to promote AP for AS. As you and all the AP crowd has acknowledged, if AP works, it can take a year to see results. In one year of severe AS, a persons entire spine can be fused. You know how they die? Not being able to move their head, they trip and when they fall their spine snaps. Dead at a very early age. So I recommend following a doctor your trust, a rheumatologist for treatment instead of finding one of the 4 or 5 doctors in the US who treat with antibiotics.
[QUOTE=Bird Girrl] So I recommend following a doctor your trust, a rheumatologist for treatment instead of finding one of the
4 or 5 doctors in the US who treat with antibiotics.[/QUOTE]
Really only 4 or 5? You mean we have already been to half of them? Wow.
limitations to four or five may not be the case.... maybe the case in some areas though..
but.. I would not want to be responsible for recommending a treatment that may not work.. to a person who has a severely advancing disease that could have some tragic results.. AS, RA or whatever..
WE... are not physicians... we are not specialists... we have no right saying to someone... DO THIS.. IT works!! Look at me... because each case is different.. and some therapies have their window for treatment.
CCP isn't the be all to end all of DX in RA...... nor is it the only marker of disease activity...
Why is that the point of contention??? I don't get it.
As with all messages on this board, it is up to the individual to filter any information and either use it or don't - Pip is only recommending something she knows to work which an awful lot of people do here with all sorts of suggestions, give her a break!
I believe we should all run everything by our Rheumy's and then make an informed decision. I know I was thrilled when I first heard about AP, as it was another treatment that just might work, and like all the Dmards and biologics, it works for some and not others. My girlfriend and I started AP at the same time, I gave up after 3 years as I felt it was not working for me, but she is still going some 5 years later as it has worked for her. Keep trying to find that one thing that works for you. Kind regards Janie.
janiefx2009-01-16 20:00:29EXACTLY, janie.. Right on JanieThanks guys.
My point in this post was to question the progression of AS on TNF's even in area's that had no inflammation per the MRI's at the start of therapy. This tied into the other threads...what happens to an underlying infection on suppressents? It would keep progressing, and into area's that were previously uneffected. Anna knows AS is usually homminus.
Pip
[QUOTE=Pip!]I know of AS people on Mino - just a thougth Anna.
It also has antibacterial activity. Wonder if they'd do a study and see what happens with aggregated CCP scores with Mino?
Nah - it doesn't work.
Pip
[QUOTE=JasmineRain] [QUOTE=Pip!]I know of AS people on Mino - just a thougth Anna.
Pip
[/QUOTE]
Minocycline has anti-TNF activity
[/QUOTE]
really?
wow.
so.. if the anti-TNF of AP puts you in remission....... do you need to continue it??
Babs -
My CCP was positive twice and is negative now. 10% can go med free and I intend to be in that group. That means I need to stop missing my meds which I did over Christmas. Look again at this study - it's saying the CCP aggregate numbers on TNF therapy increased or remained the same - hence my question on how they calculate 'remission'. Do they count CCP for remission or only RF, SED, etc?
My opinion - when I get remission on Mino, it's going to be because of it's antibacterial qualities - which apparently can lower CCP.
Pip
what if you've never had a positive CCF??? babs102009-01-17 09:54:34Well, according to Lev you don't have RA. LOL
No, seriously, I'm still not convinced that our tests accurately measure anything. So, do people with minimal labs that go back into the normal range get counted for remission on the TNF remission? What about people like me with an RF of over 300 now? I'm half way there but....
This is why I'm wondering about how they determine remission and how we can use that to get remission.
Pip
No.. I thought according to Lev, YOU don't have RA
I am sero negative, but TBH, I am not sure about my CCP levels.. I'll have to pull my files...I do not think I have any blood markers or my RD would not have had to DX me by drawing synovial fluid and putting it through the labs..... I honestly don't know how you get a better DX than that!!
According to my RD... when I have no inflamed joints... when there is NO inflammation for a certain period... and my stiffness in the a.m. is less and less (which it is now less than 30 minutes w/ enbrel) he will be able to say remission......
It's a science... all science has variables... I'm a variable *shrug*
LOL
Seriously - we'd been told that the CCP was the gold standard - but now I'm seeing studies that say it's not all that, down to 70% on the last thing I saw. I don't think they count the CCP for remission tho so - techincally, you could be in remission if the CCP levels went up.
But, are we??? I don't like technicalities...I want something on paper which is nie impossible with RA.
And this is something I don't understand...my RF is still over 300 - I'm not in remission. But I have no pain at all. No swelling. No visible inflammation. Maybe a minunte of morning stiffness and that would easily be confused by a non-RA person as 'aging'. I really want to see my next blood draw and see what pops up.
Pip
how old are you, Pip? Are you in your 50's 60's or 70's..... then maybe you would have old age achiness in the a.m?
good luck w/ the next draw? I'm interested in mine too.. I give next week.. I see dr in february............
OH.. I'm also having my Vit D tested again this time around.. after I have the draw done, I call the endocrinologist to schedule......... wish me luck on that cause I've NOT been good about taking my vitamins.
CCP is used in conjunction with other testing and scoring to determine clinical remission. Mine is within normal limits. You need all the criteria to meet clinical remission, not just a few points. Lindy
No, not quite there yet - but oddly - a bunch of mom's at the school are all talking about aging and achiness in the AM. They're not sick...so I'm thinking 'what, this is supposed to be normal?" They sound a LOT worse off than me, KWIM?
Pip
If your CCP is negative, you very could have a different inflammatory arthritis like AS or PsA instead of sero negative RA. My point is that Pip actually doesn't know much about AS if she is wondering about their CCP.
Many of the regular DMARDs do not work on the spine of AS people so the TNFs have been a miracle. I suggest anyone who questions that to imagine extreme back pain which disappears within two weeks of starting a TNF. Now, continue with that extreme back pain while you try AP which takes a long time to start working, IF it works even mildly. Only 4 or 5 doctors and most of them are not rheumatologists offer AP for AS patients in the entire USA. If you wonder why, put a bunch of knives into your back and try to function. AS patients with damage are generally on continuous morphine. I've managed to avoid that by taking TNF's, since my AS also effects my wrists, hands and ankles I need to take MTX and arava also.
See a specialist, someone you trust and follow their lead. Do not listen to people who like to pretend they are doctors. They don't even have to follow any rules for their marketing. If you have ever had any back pain, multiply it by 10 and think about living with it daily for the rest of your lives.My, my, my - I will definitely take your advice and stop reading your posts. This is similar research -
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