Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fusing

Hello, nenadu73:



HALTED: NSD; Carol Sinclair's "The New IBS Low-Starch Diet."



Yes, even after TOTAL fusion there is benefit to not having active AS--I had to do it to save my eyesight as iritis was about to steal this from me!



We can turn the fusing clock back about TWO YEARS, according to Professor Ebringer: The process of fusion begins with the complement cascade inflammatory reaction that results in mass transport into (and out of) the synovium: The viscous humors are replaced by a more solid gel through the process called "fibrosis" (the intermediary stage in fusing).

Once the inflammation has stopped, the now thixotropic material will either dissipate normally, or form fusions of various characters which may not be permanent. However, once fusion has occurred there is very little that can be done. Some have claimed that magnesium supplementation can help remove these deposits; I think it is just much better to avoid them in the first place.

We have MELTING SPINES--and our vertebrae are collapsing while some material (mostly calcium) is being removed and either deposits locally as osteophytes or carried out even forming kidney stones along the way sometimes.





Carol Sinclair has been on her NSD MANY MANY years. Her father had severe AS and was quite hunched over and certainly fused and Carol is HLA B27 positive. Yet even today she cannot get an 'official' diagnosis of AS because her SIJs remain entirely clear.

Giraud Campbell ("A Doctor's PROVEN New Home Cure for Arthritis") took X-rays that showed some bone rebuilding in patients under his care (which included a dietary regimen devoid of starch--many years before Ebringer, et al). If this can be done, then management of fusion through diet is already proven possible.

HEALTH,
John

Thank you John you are always so supportive and encouraging!

Hi nenadu73,

Fusion is not reversible. Once an area has progressed to solid bone fusion, it's permanent damage.

Based on medical evidence and from a collective of experts: 2010 update of the ASAS/EULAR recommendations for the management of ankylosing spondylitis

"Anti-TNF therapy should be given to patients with persistently high disease activity despite conventional treatments according to the ASAS recommendations."


Here is a good one: Adalimumab: long-term safety in 23458 patients...

"Results The most frequently reported serious adverse events across indications were infections with greatest incidence in RA and CD trials. Overall malignancy rates for adalimumab-treated patients were as expected for the general population; the incidence of lymphoma was increased in patients with RA, but within the range expected in RA without anti-TNF therapy; non-melanoma skin cancer incidence was raised in RA, Ps and CD. In all indications, death rates were lower than, or equivalent to, those expected in the general population."


"Conclusions Analysis of adverse events of interest through nearly 12 years of adalimumab exposure in clinical trials across indications demonstrated individual differences in rates by disease populations, no new safety signals and a safety profile consistent with known information about the anti-TNF class."

The fact that, "TNF-inhibitors appear to reduce radiographic progression in AS, especially with early initiation and longer duration of follow up." is more good news, along with what we already know to be true - that they can be and are excellent (!) at controlling symptoms for AS patients.

I have AS and have been on Remicade for nearly 9 years. There is not a single twig of doubt in my mind that at the rate I was previously progressing, had I not been on a TNF-inhibitor for the past 9 years, my fusion would be much farther advanced and I wouldn't have the flexibility that 1 still have today. Words cannot express how much my quality of life improved. My life then to now is night to day!

We all need to choose for ourselves of course.

Mig, what's the extent of your fusion and how fast did it progress, if I may ask?

Dear Mig,
when there is such study it is always recomendable to scratch little beneath the surface and there you may find many interesting facts.
First this wasn't one study but 71 studies which collected 23 000 people. According which criteria they were collected is good question. It means that averagely every study had about 350 patients.
Also patients were followed up to 70 days after last administrated dose of cure, not longer. It means for example that study lasts one year and after that only 70 days patients were followed.
Median duration of exposure for all patients was 0.6 years or half year. Only half year. Exposure over 2 years was only 22,2% of patients and more than five years on therapy were 8,4%...it means that you would be,for example in the group of 1% or even less!
Very interesting fact that you may find if you decide to read or present full study is that "All patients underwent medical review by COMPANY doctors". Why someone would do that? I guess that every rheumatologist has history of his patients which may be used.
So, there are many questions in this study which stay without answer. As I alrady said, answers can't be given by forced and suspicious studies until time shows real effects of "biologics". And once more, I would be very,very happy if time shows they are really "revolutionary cures" but until then risks stay far too big.
Such studies just give us more reason to worry why would someone make such study if everything is just fine.

nenadu,

I agree with what you're saying.

However I think it all comes down to quality of living. If you feel you can cope without the biologics that's fantastic. However, many people cannot cope and are willing to take the risk to try and improve their situation. The majority of people who use biologics have experienced positive results and had minimal side effects. There is a small percentage that either doesn't respond or experienced dangerous side effects but most people can see that the relative risk is low and if the disease is severe enough, it is not an extremely difficult decision to make. I was hesitant for a very long time just like you. I was cynical about it all for years but I was not experiencing results with any other treatment or medication and my situation was becoming very dire. I took that risk and am hoping for positive results from enbrel in the near future.

I understand your concerns though. I actually have a friend who is one year younger than me with AS as well. He was all into the alternative treatment which is perfectly fine. However he was not experiencing any results and he was in a bad state. He didn't want to go on biologics but after he did he became pain free. He has been on remicade for almost 2 years and has been in remision for that period of time. He has had no side effects and is back living a normal life as if he never had AS.

Seb

Seb,
I do understand that people who are using biologics trying to present their decision as the best possible or let's say better than the others. You are talking descriptively "most people" "small percentage", "low risk"...in the same time you, or any body else don't give exact numberst and facts. Fact that someone is on the therapy for two years and feels good is such weak argument.
I am talking this tomyoumas doctor, as someone who won't like to be in situation to read studies that biologics are withdrawn because it severe side effects.
We have great example that NSAIDs are seriously harming people, causing deaths and they are still widely in use around the world.
Biologics are still in thenphase ofntesting and unfortunately it is silently aproven to be made on living people.
Do you know something about their sideffects? Sideffects on genetic material?
Let's not play hide and seek medicine is very serious thing.

If you're AS is severe enough, you will eventually consider biologics because diet does not help everyone. To say otherwise is just an outright lie. If you don't consider biologics well either your disease is not that bad, you don't really have AS, or you must really like to suffer. That's all there is to it. Sure there's side effects but let me tell you something. You are being overly cautious. Most people do not have side effects, and if they do, they are not that significant. And as for cancer being a side effects. I've seen studies and talked to doctors that say you may be even more at risk without the biologics. Sure, a suppressed immune system can leave you slightly more vulnerable to cancers. But uncontrolled inflammation can also increase your risk of cancer and heart disease (the two leading killers of AS patients). In fact they found in studies that people with AS who had the highest risk of cancer were people who had uncontrolled inflammation.

I understand you being scared about drug risks. We've all been there, but at some point you have to decide if you want to live comfortably or if you want to be in pain and expose yourself to a greater chance of disability. I've talked to a lot of people who have rheumatic diseases in infusion rooms and support groups about biolgics. Nearly all of them are doing very well. Biologics were life changing for them. I know people who have been on remicade and enbrel for over 10 years and they're still doing well.

the paragraph In red is just about the stupidest/dumbest thing I have read in my entire life....I ain't even gonna discuss this with you

and I have news for you Bub, cancer and heart disease are probably the biggest killers of folk WITHOUT any AS issues

Hey salty nice to meet you. glad you're so friendly.