Kickas.org
Posted By: nenadu73 Fusing - 09/11/13 07:38 AM
I have red many posts and topics on forum but couldn't find any specific which deals with fusing. Also I have found many x-rays on net with different stage of fusing from discrete osseification to "bamboo spine".
Does someone know if there is anything what may be done with fusing to be stoped or reverted? I do understand that diet may stop the process of disease, but when fusing starts is there any benefit? Is fusing definite process?
Did someone make x-rays after longer period of diet? And were there any changes if fusion started?
Posted By: seb Re: Fusing - 09/11/13 07:55 AM
I feel like fusion is inevitable with me. I seem to be unresponsive to every form on treatment I try. Hopefully I will find something that works in the future though. I think the key for me is to work on my posture so that I fuse upright without the stooping. I try to move and stretch as much as possible so hopefully I can avoid the stooping, although looking at my granddad's posture it's going to be one hell of a challenge for me.

I think if you can lower disease activity then you can slow fusion. One of the best ways to lower disease activity has to be diet. Many people do really well on this.

Good luck,
Seb
Posted By: seb Re: Fusing - 09/11/13 07:57 AM
I should also say that I am in the minority. Most people respond really well to forms of treatment like biologics so if you ever go on them, the chance is that you will live a fantastic life.

If you have a good treatment plan and exercise and correct your posture as much as possible, I think you'll do fine.
Posted By: nenadu73 Re: Fusing - 09/11/13 09:28 AM
Dear Seb thank you for answer,
maintaining good posture is very important however not alwayso so easy to obtain. I was wondering if NSD may reverse fusing as dr Ebringer told that with diet we may get to the state of disease which was two years ago.
Posted By: jpinperth Re: Fusing - 09/11/13 11:25 AM
Hi There

I am one of the lucky one's . I am fused in my SI but in no other area. I have had A/S for 25 years, had terrible pain for years, but now it has really settled down. Don't give up hope. I don't do the diet , but I do exercise daily .

Janet
Posted By: nenadu73 Re: Fusing - 09/11/13 12:55 PM
Thank you Janet,
I am glad that You are doing fine and wish you to stay like that.
Did You take some medications?
AS goes in milder form in females so maybe it isn't so big miracle :-)
Posted By: nenadu73 Re: Fusing - 09/11/13 01:05 PM
Biologics do not change course of disease and lot of heavy side affects go with them. Relief which they bring may be payed by very high price. Also they are absolutely unsecure about their effects on genetics, and children who you may have one day.
Posted By: jpinperth Re: Fusing - 09/11/13 02:10 PM
Hi There,

I took a very old NSAID called phenylbutaone daily for 20 years, until it was taken off the market. Then I switched to the news Nsaids and could,'t tolerate them. I credit my success to Omega 3 fish oil 6000mg a day for the past 25 years. It is a natural anti-inflammatory. It was a rheumy who suggested it many years ago.


Janet
Posted By: ineptwill Re: Fusing - 09/11/13 05:16 PM
Nooo not milder in females............ask Mig.........she's been there.

Can be as grim as can be for both sexes....I know cos I am a superior male..............gulp..!
Posted By: Possi Re: Fusing - 09/11/13 09:10 PM
You are so right Ineptwill. Not so inept after all.

Oh wait. I read the rest of it. Superior male? Ineptwill IS the right word. smile
Posted By: Wilhelm Re: Fusing - 09/11/13 09:56 PM
Fusion is probably the scariest thing about AS for me. I can tolerate pain pretty well, I can live with some damage, but permanent and apparent fusion is like a sword hanging over my head.

My neck is the part that scares me the most fusion-wise cause it's more apparent and annoying (I find).

Luckily for now (knock on wood) I don't have any fusion after 5 years of disease.
Posted By: nenadu73 Re: Fusing - 09/11/13 10:07 PM
Just to try to go back to the topic, is fusing reversible?
Posted By: seb Re: Fusing - 09/12/13 03:53 AM
No I don't think fusion is reversible. Once the fused bone is formed, it will probably be like that forever.
Posted By: seb Re: Fusing - 09/12/13 03:56 AM
Originally Posted By: Wilhelm
Fusion is probably the scariest thing about AS for me. I can tolerate pain pretty well, I can live with some damage, but permanent and apparent fusion is like a sword hanging over my head.

My neck is the part that scares me the most fusion-wise cause it's more apparent and annoying (I find).

Luckily for now (knock on wood) I don't have any fusion after 5 years of disease.


I agree. The fusion and potential deformity is the scariest part of living with this. I'm only 20 and had severe pain for 5 years. I don't really want to think about where I will be when I'm 30.

Hopefully we can find a solution and avoid the stooping.
Posted By: Sue22 Re: Fusing - 09/12/13 04:33 AM
Originally Posted By: seb
Originally Posted By: Wilhelm
Fusion is probably the scariest thing about AS for me. I can tolerate pain pretty well, I can live with some damage, but permanent and apparent fusion is like a sword hanging over my head.

My neck is the part that scares me the most fusion-wise cause it's more apparent and annoying (I find).

Luckily for now (knock on wood) I don't have any fusion after 5 years of disease.


I agree. The fusion and potential deformity is the scariest part of living with this. I'm only 20 and had severe pain for 5 years. I don't really want to think about where I will be when I'm 30.

Hopefully we can find a solution and avoid the stooping.


Seb, I've now had for at least 15 years, severe inflammation and pain and disfunction, but no evidence of fusing.

I don't think we all fuse.

Rather, my inflammation eats away at my bones: my forearm is -1.2 where there is no inflammation and -2.4 in my wrist where there has been a lot of inflammation.

(and maybe contributes to the bone spur formation)

So, severe inflammation and pain does not necessarily lead to fusing.

No one in my family talks about fusing, just the inflammation and pain that goes along with that. So I'm hoping that means I won't be fusing....time will tell I guess. But that doesn't seem to be part of my inflammatory process.

Just to reiterate, women don't necessarily have a milder case, but being on here, hearing everyone talk, I do think many women "present" differently than the old stereotypical model, which included fusing.

No, fusing is not, to my knowledge reversible.

Also a comment on the biologics; for me, the Humira has been life changing. And I feel healthier on it than not on it including less problems with UTIs, not more like I had feared would happen. Its only been a few months, but so far, so good.

Are biologics dangerous?

maybe.

Is chronic inflammation dangerous?

absolutely!

Everything from heart disease to cancer to osteoporosis. No thank you.
Posted By: nenadu73 Re: Fusing - 09/12/13 12:53 PM
Chronic inflamation is dangerous absolutely, but telling that biologics are not dangerous is untrue absolutely!
Everyone has right to make its own choices but choices based on correct and proved facts. If you ask yourself may I get lymphoma,MS, pneumonia, other cancers using biologics the answer is yes, and that is the fact. It is written on their official sites and you need to know it. After that choice is upon you.
Posted By: seb Re: Fusing - 09/12/13 01:57 PM
Interesting points Sue, thanks for that.

Nenandu73. I think we all agree that biologics can be very dangerous drugs, there's no denying it. However, at some point you may get to the stage where you are willing to try anything to improve your life.

At this stage I'm waking up in extreme pain pretty much every single day and battling through this for the whole day. Most days I am only at school for a couple of hours because the pain is way past my coping threshold. I sadly am probably spending most of my life as a college student sleeping. My grades are suffering, as are my social and sporting lives.

I really want to live a normal life and I am hopeful that Enbrel will kick in at some point and give me this privilege. I am hopeful that the day will come when I can be happy about my current state and positive about the future.

Biologics provide this hope. The majority of people experience fantastic results on bologics and have no side effects. I agree though, the side effects can be terrifying. Touch wood that you, I or anybody will have to experience MS, cancer or anything like that from these drugs.

It depends how much your condition is affecting your life. I as most people on here would probably recommend that you look into the no starch diet first. Many many people have amazing results on this and I think you should definitely give it a go. If this doesn't work however, I think biologics are definitely another option that should be considered.
Posted By: Stormy Re: Fusing - 09/12/13 02:35 PM
Originally Posted By: nenadu73
Does someone know if there is anything what may be done with fusing to be stoped or reverted?
Originally Posted By: nenadu73
Just to try to go back to the topic, is fusing reversible?
Once a joint is fused, it can not be reversed. However, according to this recent study, Anti-TNF medications DO appear to reduce or slow down radiographic progression. Early treatment is found to be more effective then later treatment. http://www.ncbi.nlm.nih.gov/pubmed/23818109

CONCLUSIONS:
TNF-inhibitors appear to reduce radiographic progression in AS, especially with early initiation and longer duration of follow up. © 2013 American College of Rheumatology.

Originally Posted By: nenadu73
Biologics do not change course of disease and lot of heavy side affects go with them. Relief which they bring may be payed by very high price.
Biologics have proven to be highly effective for many people. No one is denying the possibility of side effects, but the serious side effects you list are extremely rare. There are potential side effects to absolutely everything in life - including non-treatment and "natural" cures. For something to have an effect in treating disease, there is always a potential side effect.

Originally Posted By: nenadu73
Everyone has right to make its own choices but choices based on correct and proved facts. If you ask yourself may I get lymphoma,MS, pneumonia, other cancers using biologics the answer is yes, and that is the fact. It is written on their official sites and you need to know it. After that choice is upon you.
Yes, people should make their own informed choices based on facts, not based on fear. Facts would come from controlled medical studies, not sensational news headlines or posts on patient forums that are not backed up by references from medical studies. Studies have shown that the risk of cancer is elevated in patients with inflammatory disorders over the general population. You can also get any of the conditions you listed while not taking anti-TNFs.
Posted By: nenadu73 Re: Fusing - 09/13/13 06:31 AM
Seb,
I completely understand what You say and as I have written final decision is upon every single at the end. As MD I have obligation to say everything I know. Biologics are in use for short period of time that we may give solid conclusions. Unfortunately even for such short period of time they showed very bad side effects. There are people on this forum also who experienced that. When I say something like this I don't even think on pneumonia but MS, cancers...
Also I guess there are young people who want to have children, and there are no data what side effects biologics may cause to babies and genetic material of parents.
Maybe biologics will show as revolutionary cure for AS but in this moment it is far too early that anyone may say "take it, it is the solution for you"
Posted By: nenadu73 Re: Fusing - 09/13/13 07:41 AM
Stormy,
I see that you are very good in quoting so I hope You will be able to show me more studies which may answer questions, not important for me but for the health of people who are trying to find the best solution for their AS.
I am MD epidemiologist, and I know very good what are studies. You showed one study on the 340 people to prove efficiency of biologics. On this forum you may find study which shows that benefits from Sulfasalazine and Methatrexate are the same as from biologics. I ask you which study should be believed more?
You say "Biologics have proven to be highly effective for many people". What studies are you quoting when you write this? How MANY people? How many people suffered severe side effects?
How long are biologics in use and how big specimen is used in studies?
What are side effects on genetic material of parents and newborn babies?
On official sites for biologics you may find warnings about MS, cancers, lymphoma...and you say it is spreading a fear if someone repeat it?
Serious studies about some medication have to be made for period not shorter than 10 years. It is minimum. Also it has to cover thousands of people and even that wouldn't be enough to make absolutely sure conclusion.
Doll and Hill made study about side effects of smoking on over 40 000 people for several decades to prove it.
Do you use biologics? What is your profession?
I don't see that I have told that AS wouldn't be cured, but spinning story about biologics as ultimate choice in this moment when there are so many unknown facts and dangerous side effects is at least unfair.
When the first time appeared Enbrel was presented as miracle cure, now from this point of view it is more than obvious that it wasn't true.
Once again everyone choose it's own way but when you choose it ask for facts as solid as it can be.
Posted By: DragonSlayer Re: Fusing - 09/13/13 04:35 PM
Hello, nenadu73:

Quote:
Does someone know if there is anything what may be done with fusing to be stoped or reverted?


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

Quote:
I do understand that diet may stop the process of disease, but when fusing starts is there any benefit?


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!

Quote:
Is fusing definite process?


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.



Quote:
Did someone make x-rays after longer period of diet? And were there any changes if fusion started?


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
Posted By: nenadu73 Re: Fusing - 09/14/13 05:35 AM
Thank you John you are always so supportive and encouraging!
Posted By: mig Re: Fusing - 09/15/13 08:58 PM
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."

Quote:
You say "Biologics have proven to be highly effective for many people". What studies are you quoting when you write this? How MANY people? How many people suffered severe side effects?

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."

Quote:
Serious studies about some medication have to be made for period not shorter than 10 years.

"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. smile
Posted By: Wilhelm Re: Fusing - 09/16/13 12:04 AM
Mig, what's the extent of your fusion and how fast did it progress, if I may ask?
Posted By: nenadu73 Re: Fusing - 09/16/13 07:44 AM
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.
Posted By: seb Re: Fusing - 09/16/13 12:32 PM
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
Posted By: nenadu73 Re: Fusing - 09/16/13 03:15 PM
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.
Posted By: an0thermike Re: Fusing - 09/16/13 07:35 PM
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.

Posted By: saltire Re: Fusing - 09/16/13 07:54 PM
Originally Posted By: an0thermike
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
Posted By: an0thermike Re: Fusing - 09/16/13 09:57 PM
Hey salty nice to meet you. glad you're so friendly.
Posted By: saltire Re: Fusing - 09/16/13 10:15 PM
so, all the poor suffering folks in here, for all their various reasons, who choose not to consider TNFs are.....

a) not in enough pain/disease not that bad

b) don't have AS in the first place, or

c) really enjoy the suffering

congratulations Bub you are now on ignore

I am really gonna miss those nuggets of wisdom and your insight/experience of AS.

27 yo and already he knows it all

nice to meet you too.Goodbye
Posted By: an0thermike Re: Fusing - 09/16/13 10:21 PM
Hey, that's how I feel about after trying diet and going through what I've been through.

Anyway, this is a support group, or so I thought. I was at least hoping people would have the decency to be nice to each other here. Anyway I'm glad I won't have to talk to you anymore and thanks for ignoring me, you've saved me the trouble.

For someone who I assume is much older than I am, you've really shown your maturity.
Posted By: mig Re: Fusing - 09/16/13 10:41 PM
Hi Wilhelm,

To answer you on the extent of my fusion, my reports say:
There is bilateral osteoarthritis of the hips characterized by joint space narrowing, marginal osteophytes, subchondral cysts and sclerosis. Findings are mild-to-moderate on the right and moderate-to-severe on the left. This finding has not significantly changed.

There is bilateral fusion of the sacroiliac joints. Degenerative changes of the lower lumbar spine. Enthesophtyes are seen at the left ischial tuberosity and left anterior-superior ileac spine.

There are small syndesmophytes throughout the thoracic spine. There is diffuse osteopenia, vertebral height and disc spaces are preserved.

Ankylosis involving the posterior elements of C2--C4 vertebral bodies and narrowing of the facet joints throughout the cervical spine, with normal alignment.

I've had AS for 33 yrs. The above occurred in the first 24 years of AS, between the ages of 18 and 42. I'd guess it was steady progress, I was in a constant state of flare and didn't experience spells of remission. Mine was typical, starting at the bottom and working it's way up. The first neck pains appeared at 24 y/o or so. Iritis started at 31 y/o and later became chronic.

When I began Remicade at 42 my range of motion improved considerably over the course of the next 6 months to 1 yr, and I've managed to maintain my level of flexibility for the last 9 years on the med. If Remicade has not stopped the fusion process, then it has certainly slowed it down considerably, otherwise I would have continued to lose ROM. My results could not be better, but as they say, your mileage may vary.

Thank you for your question Wilhelm. I wish you the best!
mig
Posted By: mig Re: Fusing - 09/16/13 11:13 PM
Dear nenadu73,

I see that we have considerably different points of view. I am always glad to see people reading up and believe that educating ourselves on both the risks and benefits, in the context of our own health (or lack thereof), and in conjunction with our specialists, is the best way to arrive at an informed decision.

I have made mine and could not be happier. True, there are some possible risks. In my case, not using a highly effective way to control my previously seriously out of control inflammation posed the far bigger and very real danger.

I wish you luck in whichever treatment options you choose.
mig
Posted By: nenadu73 Re: Fusing - 09/17/13 07:25 AM
Quote:
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.

I agree with you about diet but If you are objective you have to admit that neither biologics help everyone. There are so many people who switched almost all biologics just on this forum and that is the fact.
Quote:
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

OK, let's say I like to suffer although it is really ugly way to comunicate with anyone. As I see from this sentence you are giving yoursel role of ultimate judge.
Quote:
Most people do not have side effects, and if they do, they are not that significant
How many? Tell me exact numbers. And where from did you get data about side effects and how serious they are?
Quote:
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).
Slightly? There are people on this forum also who can't recover their immune system and wbc and have to stop with biologics. People stucked in pain and with destroyed immune system. And then what?Cancer and heart disease are the greatest "killers" of all people not just people with AS.
Posted By: an0thermike Re: Fusing - 09/17/13 08:36 AM
Hey Nenadu,

No biologics do not help everyone, but they do help alot of people, and in my experience with higher success rates than diet. There's no silver bullet for this disease. There's nothing out there that's going to help everyone for sure.

Quote:
OK, let's say I like to suffer although it is really ugly way to comunicate with anyone. As I see from this sentence you are giving yoursel role of ultimate judge.


I'm saying this becuase of my personal experience with diet and alternative treatment. I realized after subjecting myself to nonstop pain for almost a year that I was just stalling and that I had to make a decision. Did I want to live in fear of side effects which I probably wouldn't get. Or did I want to take a chance and do something (start remicade) that could really improve my life.

Quote:
How many? Tell me exact numbers. And where from did you get data about side effects and how serious they are?


I'm sorry, I don't know every patient in the world with AS, so I don't think anyone will ever be able to give you an exact number. I said this because of studies I've read, people I've met with the disease, and what doctors have told me. I think that's probably the best I can do.

Quote:
Slightly? There are people on this forum also who can't recover their immune system and wbc and have to stop with biologics. People stucked in pain and with destroyed immune system. And then what?Cancer and heart disease are the greatest "killers" of all people not just people with AS.


Point me to those people. I don't know them and I've never met anyone like that. Anyway if those people do exist, I guarantee that they're in the very very small minority. I know of a couple people who have developed MS, but I have never met one of those patients outside of the internet and I've met quite a few people who are on biologics. And yes, cancer and heart disease are the leading killers of all people not just with AS. However the incidence of cancer and heart disease in people with AS is considerably higher. And the biggest risk factor they have found associated with mortality in AS patients is uncontrolled inflammation. Here is just one study: http://www.ncbi.nlm.nih.gov/pubmed/21784726
Posted By: seb Re: Fusing - 09/17/13 09:00 AM
Originally Posted By: nenadu73
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.


I understand the side effects as well as most people out there from conventional medication used for AS. I do not want to be taking NSAID's because I know that they destroy your gut. I do not want to be taking biologics because I know how severe the side effects can be. I do not want to be taking them because I feel like we do not know enough about the long term impact that they may cause. I don't think anyone WANTS to be taking these serious drugs.

Here is the thing though...

When you are living in chronic pain every single day of your life, when you can't sit anywhere for longer than 30 minutes, when you struggle to walk up a hill that you use to run up without any trouble, when you can't play high impact sports anymore due to the pain, when you spend more time sleeping or in bed than actually living life, when you have had thoughts about ending it all as a 20 year old, it is a very easy decision to make.

I understand where you are coming from but I think you have to respect people's decision to use biologics and try to understand the situation that they must have been in to have accepted these drugs.

I fully respect your decision to question these drugs. While I don't have statistical proof infront of me, I can tell you that if you searched around a little bit you would find multiple studies showing that it is a small percentage that actually develops significant side effects.

I think we should probably draw a line under this now and respect each others opinions. I don't know if this is going to go anywhere..
Posted By: nenadu73 Re: Fusing - 09/17/13 01:41 PM
Dear Mig,
First of all the point is not what I will choose or what you will choose, it is all about AS and it is very bad to recommend anyone something which is not fully proved and checked.
Quote:
True, there are some possible risks. 

No,there are risks. There are confirmed risks, which people would know. I have commented about study you mentioned and expected firm arguments from you.
There is no need to continue this when you insist on your oppinions without strong argumentation.
Besides that topic was fusing not biologics.
Posted By: nenadu73 Re: Fusing - 09/17/13 02:27 PM
Dear An0thermike,
I do understand your need to present here yourself as someone who made the best decision, in the same time you are encouraging yourself about your decision and that is fine for me until you give right yourself to disinform other with "your personal experience".
Quote:
No biologics do not help everyone, but they do help alot of people, and in my experience with higher success rates than diet.

What is your experience? It is not enough to meet several people in therapy room. So stop joking with people here this is serious desease which people struggling for decades. What is your experience about diet? How long you were on diet?


Quote:
I'm sorry, I don't know every patient in the world with AS, so I don't think anyone will ever be able to give you an exact number.

Such statement only shows your potentials for discussing this topic. It is the same If you would say my grandfather was smoking and drinking whole life and he died at the age of 105...but unfortunately it is just single grandfather.

Quote:
Point me to those people.

It would be very rude to point seek people but search troughout forum you will find them but keep in mind that they are seek and please be polite and do not offend them as you did with people on this topic.

Quote:
Anyway if those people do exist, I guarantee that they're in the very very small minority

This is the best! If you don't know someone he doesn't exist. You are so funny! :-)


This study forgot SMALL fact that NSAIDs are also causing serious heart problems so I really don't know how to recognize how many patients used it and for how long.
Anyway topic is fusing so please stick to it instead of these fairy tales.
Posted By: nenadu73 Re: Fusing - 09/17/13 02:49 PM
Dear Seb,
this is not story about wanting and I know it very well as I am copeing with AS for 18 years. Same story was in the begining with NSAIDs and today they are confirmed as very dangerous but still being prescribed.
I am not judging anyone's oppinion but people need to know what to expect. And this is not affraiding anyone as you may find people with MS, destroyed immune system and so on on this forum.
Quote:
I understand where you are coming from

I don't understand what did you want to say so please explain me.
Quote:
 I can tell you that if you searched around a little bit you would find multiple studies showing that it is a small percentage that actually develops significant side effects. 

Exactly this is the point! It is too early to make serious and objective study which will prove or disaprove safety of these drugs.And that's the reason why they prescribed it so much, to make proper experimental study and see efficiency of biologics...I am against experiments on people as MD.
Posted By: Dotyisle Re: Fusing - 09/17/13 03:29 PM
Hello Mike,

You have replied to several posts with comments>
- "Hey, that's how I feel"
- "and in my experience"
- "I'm saying this becuase of my personal experience"

That is all based on sample size of 1 AS sufferer. There are many more AS sufferers here posting that have their own personal experience and stories with AS as well.

I believe this comment>

Quote:
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.


< to be lacking of any kind of empathy towards all the posters here with their own personal history of AS. You have not walked in their shoes nor lived their life. You can not judge accurately if their pain is more/less than yours.

The comment just prior to the one above is equally lacking in empathy to anyone here that posts and found relief with diet. You have diminished their pain as well.

Regarding your comment>
Quote:
Anyway, this is a support group, or so I thought.


You are correct this is a support group, but if there was no consideration for the other posters and their experiences, I believe it would stop being a support group very quickly.

Regards,

Tim
Posted By: an0thermike Re: Fusing - 09/17/13 05:27 PM
Dotyisle,

Unfortunately, since this is a support group, you're gonna get some personal responses. If people don't care to hear personal responses then I'm not sure why anyone would join a support group in the first place. I don't think we come here to just post and read studies all day.

I understand my comment could have been seen as sort of abrasive, and I apologize for that. I know no one likes to suffer, so that was wrong of me to say. However, I read on these forums all the time about people who are doing diet for months and months and months and they still feel terrible. I've been extremely strict on the diet for roughly 14 months now and it's still done absolutely nothing for me. I'm still doing it just because I have some crazy hope that it could work in the future. But I know that's the desperation talking. I know this diet is never going to do anything for my pain. So when I see people on this diet suffering for months and months, it does make me a little angry that they're not considering medication, which could really help them. I know it's their own bodies, but I feel bad for them. Thats empathy.


nenadu,

You've clearly already made up your mind on this, so it's useless for us to keep posting when you keep dismissing everything we say. You're definitely entitled to your own opinion, but please don't try to minimize what we're saying. I'm sure no one here is trying to decieve you. We have no vested interest in getting you to try medication.

At this point I think its pretty clear that this thread is going nowhere fast and I really think locking it might be a good idea so we can all just move on.
Posted By: Wilhelm Re: Fusing - 09/17/13 11:41 PM
Originally Posted By: mig

Ankylosis involving the posterior elements of C2--C4 vertebral bodies and narrowing of the facet joints throughout the cervical spine, with normal alignment.


Does "ankylosis" mean full fusion?
Posted By: nenadu73 Re: Fusing - 09/18/13 09:16 AM
Unfortunately yes, ankylosis is fusion. And I hoped that someone will know if fusing in early stages, when it is still ossification of ligaments maybe may be reverted.
Posted By: Stormy Re: Fusing - 09/18/13 03:29 PM
Originally Posted By: nenadu73
Unfortunately yes, ankylosis is fusion. And I hoped that someone will know if fusing in early stages, when it is still ossification of ligaments maybe may be reverted.
Originally Posted By: nenadu73
...I am against experiments on people as MD.
As an MD, you would know that fusion is not reversible. Ossification is the process of laying down new bone material prior to actual fusion. There is very little scientific evidence that reversal of this process is possible. There are a few alternative sites that claim that reversal is possible, but they do not have scientific evidence to support their claims. Physician's normally have access to the scientific and medical literature that would answer your questions.
Posted By: nenadu73 Re: Fusing - 09/18/13 08:15 PM
Stormy give me a break!
As MD I have learned that disabilitating in AS is very rare but...
As MD I have learn that good therapy for AS are NSAIDs but...
If you are still interested for such malicious way of comunication I offer you possibility to read this link and then I will accept your appology.
http://www.ncbi.nlm.nih.gov/m/pubmed/22909092/
Posted By: Stormy Re: Fusing - 09/18/13 10:47 PM
Originally Posted By: nenadu73

If you are still interested for such malicious way of comunication I offer you possibility to read this link and then I will accept your appology.
http://www.ncbi.nlm.nih.gov/m/pubmed/22909092/

I have absolutely NO reason to apologize to you. The VAST majority of the malicious communication on this thread has originated from you. Several people have tried to convey accurate information to you which you have refused to accept as accurate because it does not conform to what you want to hear. As I said:
Originally Posted By: Stormy
There is very little scientific evidence that reversal of this process is possible.
The alternative sites that I mentioned make all kinds of claims about reversal of fusion with supplements, diets, and herbal remedies. There is absolutely NO scientific evidence to support the alternative sites' claims. There is some - but little - mention of reversal of ossification in the scientific literature. Not enough to be called evidence. The link you posted is to a singular case study of a patient with leukemia and AS who had an apparent "spontaneous regression of syndesmophyte development" after stem cell transplantation, total body irradiation and immunosuporessive therapy. This combination is far more experimental, untested, and potentially dangerous than medications that have been tested extensively, approved by many different countries and used by a very large number of people. As noted in the case report: "To the best of our knowledge, this is the first case report presenting the partial radiologic regression of syndesmophytes." If you are an MD, you know full well that a singular case report is not considered scientific evidence. Since English is apparently not your first language, I will forgive the obvious misunderstandings and miscommunications on your part. Have a nice day.
Posted By: Pea Re: Fusing - 09/18/13 11:04 PM
Boys, boys boys, this is not a peeing contest. This thread needs to stop. It is not helpful to this support group.
Posted By: Tnate Re: Fusing - 09/19/13 02:51 AM
There are 2 new pathways and drugs that will halt the bone making process down the road in AS. They know the pathways and think are already experimenting with the therapeutic targets.

That stem cell article was only 1 report but very intriguing. I think there is another one that said it progressed their AS. I also heard something somewhere from one the stem cell doctors or one of the doctors from NW that do not recommend that treatment for this disease for some reason(bet there's a reason why). Bet the chemotherapy causes significant progression/inflammation.

Also had a doctor from the cleveland clinic tell me once someone has AS they fuse right away. You couldn't trust anything that doctor said though and he was probably referring to someone who already had some fusion going on already.

Also NSAIDs are bad for most people with AS I assume. They can be a red herring because they work at first and can relive pain but I'd be careful with them down the road...
Posted By: nenadu73 Re: Fusing - 09/19/13 08:29 AM
Quote:
The VAST majority of the malicious communication on this thread has originated from you. Several people have tried to convey accurate information to you which you have refused to accept as accurate because it does not conform to what you want to hear.

Malicious conversation is argumented questioning about biologics? Accurate information? If you red whole conversation You have been able to see who was very rude but obviously it is fine for you as you find my posts malicious.
Quote:
There is some - but little - mention of reversal of ossification in the scientific literature. Not enough to be called evidence. The link you posted is to a singular case study of a patient with leukemia and AS who had an apparent "spontaneous regression of syndesmophyte development" after stem cell transplantation, total body irradiation and immunosuporessive therapy

If you spent more time and carefuly read my posts, instead of investigating my MD title, you might notice that topic was in direction to disccus case studies as I pretty well know that there are no longtime studies with great number of patients to confirm regression of fusion.
Quote:
This combination is far more experimental, untested, and potentially dangerous than medications that have been tested extensively, approved by many different countries and used by a very large number of people.

Who compared these two things?
Quote:
Since English is apparently not your first language, I will forgive the obvious misunderstandings and miscommunications on your part.

Thank you for such generosity you have showen, I hope besides that you will work on your manners with same passion.
It would be nice to know what is your profession and also are you on NSD, do you use biologics e.t.c.?
Posted By: nenadu73 Re: Fusing - 09/19/13 10:20 AM
My intention wasn't to argue about anti-TNF, but medical ethics don't allow me to let someone shows only one side of the medal. These links, studies show that nothing is black and white.

http://m.circ.ahajournals.org/content/107/25/3133.short
http://www.rheumatology.org.hk/upload_files/EDU06.08_TNF_failure.pdf
http://peer.ccsd.cnrs.fr/docs/00/56/83/16/PDF/PEER_stage2_10.1007%252Fs00296-009-1292-x.pdf
Posted By: ineptwill Re: Fusing - 09/19/13 10:35 AM
Looking for some clarification. We don't have the acronym; M.D. here.

What does it stand for please?
Posted By: seb Re: Fusing - 09/19/13 12:51 PM
Nenandu,

I am still unclear on the overall point that you are trying to make. I think we are all aware of the side effects associated with biologic drugs. I think we can also agree that the long term side effects of biologic drugs is unknown. We agree that there are many uncertainties with these drugs. Most of us here would accept that these drugs can be dangerous. Many people here would also argue that it is well worth the risk..

I think you have to respect people's treatment decisions. I have nothing at all against you and I'm sure you are a really good person but I just feel as though your approach may have caused more conflict than it had to with several people. I hope you don't take this the wrong way. I am not attacking you.

Take care,

Seb
Posted By: Possi Re: Fusing - 09/19/13 04:35 PM
I suggest the moderators take us all out for "pie" and call this thread over. smile

Blessings.
Posted By: nenadu73 Re: Fusing - 09/19/13 04:45 PM
M as Medical and D as Doctor, in ancient Greece called Medicus and in Otoman Empire called Hecim...in deed AS attacks everyone no matter what we do for living. I didn't mention that with some special intention just to say that I am reading and listening about it for decades already.
Posted By: nenadu73 Re: Fusing - 09/19/13 05:04 PM
Seb,
If you read my posts from the start you will see that I had no specific intentions but to read experiences of people who have fusing. To see if diet has any impact on osification, if anyone made x-rays after longer period on NSD.
I didn't even mention biologics until glorification of it started. I guess I have right on my own opinion same as others.
And as I already said I don't judge anyone neither people on biologics neither on NSD. I am just trying to see benefits and side effects. Maybe someone who comes after us will have easier path to fight against AS if we objectively analize all facts. That's all.
Posted By: ilbcrzn Re: Fusing - 09/19/13 05:41 PM
Hi Possi

Hope to make apple pie this afternoon. The Winsap apple tree is a little early this year which is just fine by me. First I will be trimming the big shrub along the driveway. Takes about an hour and requires some ladder work. Coffee will help. smile

How is the bulb planting going? Have you started yet?
Posted By: Possi Re: Fusing - 09/20/13 12:05 AM
Oh, apple pie sounds wonderful. Especially with apples straight off your own tree. That seems to make them taste better. We had fruit trees when our kids were growing up. We made a lot of Apple Crisps. That was quick and easy after work/school.

No, I really am not going to be able to plant bulbs this year with my back still trying to recuperate. Can't bend, can't use the tools, etc. Our gardening daughter who is also finishing up Nursing School comes over to work in the flowers. She will plant the bulbs this year. :o) I am so thankful that she loves gardening. Right now she is cleaning out a bed so we can start anew and is digging out the stump of a huge Holly bush. It is in the "looks worse before it looks better" stage.

Take your time with trimming the shrub. It is so easy to overdo with projects like that. Are you using an electric trimmer? I hope. :o) I am not a coffee drinker so I wouldn't know. Tea helps. :o) Iced at the moment. Soon will be hot!!
Posted By: towman Re: Fusing - 09/20/13 01:10 AM
I have not posted for along time and found this to be sad.I think AS affects every one a little different and to not look at all forms of pain relief is sad.What works for one person may not work for you.Look at every thing that can help.
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