Does anyone have some indepth knowledge about the disease process of AS?

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On another AS forum an individual said that even if you stop the pain and soreness of the inflammation of AS or just stop the inflammation, the disease process keeps going. He said the chemicals produced by the inflammatory cells breaks down healthy tissue, leaves scar tissue which calcifies and turns into bone. The end result in ankylosis or bony fusion. He seemed to indicate that the only way to slow or maybe even halt this process was through a regular regimin of either NSAID's, DMARD's, or TNF Alpha Blockers.

I would think that if you stop the inflammation that the disease process would stop. But maybe thats not true. Maybe once the inflammatory cells release those chemicals that even arreating the inflammation will not have any effect on the process of damage to tissue then scar tissue, then calcification, then bony fusion. Are any of these drugs designed to slow down or halt this process? 

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  • Posted

    I am sorry Andrew but there isn't any way (at the moment) to halt or cure the process and march of AS. There are ways to delay things and slow it down, as you have mentioned, but it is not possible to stop it sadly, not at the moment. Anti TNF can slow things down, as can other meds, and I think personally exercise is absolutely key. Some people literally exercise their way through it. I was one of them for a while, but some flares are so bad you are lucky to be able to get out of bed much less get to the gym.

    My advice to you would be to keep moving, exercise like your life depends on it (And it does) take the meds, and find the best consultant with keen knowledge of AS and not just general arthritis conditions, to support you. It is imperative to stay positive ~ lots of people feel quite stressed/depressed dealing with it for years and years, and I think hope is a good thing. They are coming up with new treatments all of the time, and certainly I expect we will find one in our lifetime. So don't despair if you have AS, there are plenty of ways to carry on living a happy and healthy life.

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    • Posted

      I do not recommend the gym impact will make it worse down the track ,"Swimming low impact and stretching only.
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  • Posted

    Hi andrew from my conversations with my specialists its all about pain relief and not cure.as i have said before on here i inject once a week with etanercept downside to that it kills my inmune system.so a slight cold turns into far more i go again in june going to see if there is another form of treatment thats less harsh on my inmune system downside again i have heart issues so slightest cough or cokd put me in dock for weeks
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    • Posted

      Hi popeye ~ I am just about to start biologics. In which way are you knocked out for weeks? Are you very very ill with just a cold? I am worried about my immunity I have two young children whom are constantly ill, and very concerned about anti TNF for this reason. Would love to know your thoughts 
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    • Posted

      Hi rose i aint no doctor all i know is since march 2014 ive been injecting and never had so many colds bugs or what evers about still i will take a sniffle over not being able to walk or bend what ever they give you get the full story not like me found out myself good luck dont forget imalot older guessing plus i have other health issues good luck
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  • Posted

    Hi Andrew,

    I saw that you posted on the Low Starch thread also - are you following diet changes? 

    I do not agree with the other posts - I 100% swear I have massively slowed down my disease with diet changes.  I am in contact through other forums and website with others in the same position.

    I subscribe to what Ebringer says about Klebsiella and NSD - but my thoughts have gone beyond that to consider my Gut heath as completely sacrosanct.  I also follow research about the gut microbiome with interest - as I believe that this will unlock other clues for us.

    In short NSAID are renowned and much studied for causing gut permeability - the last thing anyone with an automimmune disease want is foreign proteins / debris crossing over.

    I haven't touched an NSAID - even Ibruprofen for over 2 years now

    I'm not cured - but I stay fit and exercise, running 5 miles on Monday and watch what I eat keeping carb low if I get pain, flares.  BTW I could switch my disease up 10 x  just by eating gluten. 

    I've been doing this for 23 years now.

     

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    • Posted

      I am so ill and would love to know how you are managing to control your AS for 23 years without the usual medication. I am on a constant flare, more or less with little variation, how do you run through a flare? It is not a challenge just a question, do you just force through the pain? How do you feel after? I am often unable to get out of bed with extreme fatigue and pain, so was wondering what you do on those days? I am desperate to find any way through this that does not involve more chemicals. I have had internal bleeding, colonscopies and serious health consquences to most of the side effects from the NSAIDs and this has become a serious problem for me. Any advice would be greatly recieved.
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    • Posted

      My Dad was damaged by NSAID drugs too.

      It frustrates me that the medical profession say that diet makes no difference to arthritis - I can promise you that it does (perhaps not for everyone but estimates range from 36 to 70 percent) and can share links that back up this... I will send you a few links to other web sites that you can look at.

      Emis Moderator comment: I have removed the details for other websites. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Interferential current stimulation (IFS Machine very good but expensive to buy one $5000   &   Chinese herbs no bleeding side effects  Named Yunnan Paiyad one side effect I know, if you have high blood pressure it will lower your pressure, I am in China now looking into it , I think other choices of process herbs here.
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    • Posted

      Hey

      Can you please share your experiences and tips as in what to do, as I'm recently diagnosed for AS and I have very less knowledge about the disease. I'm 23 now, and I want to do all I can to live a healthy life ahead.

      Looking ahead for your suggestions.

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    • Posted

      Get out and move around .....get a hold of some AS exercises and do them daily or as much as you can ...you will feel better....and it will help to keep your posture and body straight...

      Eat healthy ...it is not rocket science to supply your body with dense nutrition.....it is not always easy for everyone to eat healthy with all the empty nutrients in food available....we get addicted to it so for a lot of people eating at a higher level is no walk in the park

      If you can swing it get a least a consultation with a physical therapist...a good one can make a big difference in helping you to maintain flexibility and mobility and keep your joints healthy and working well....they can guide you in doing the exercises that are right for you and your particular circumstances

      Do some internal work, meaning practices that get you more grounded emotionally and psychologically....yoga, meditation,whatever seems to appeal to you and gives you more and more access to your Higher Self whatever that is for you

      All the above I wish I had done a lot sooner in the course of my own experience with this disease....This disease is not the end of the world ..if you play your cards right it can be a part of creating a new world

      Anyway ...best wishes .

       

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  • Posted

    Andrew - here is some in depth knowledge covering all autoimmune disease based on MS but RA ans AS are the same mechanism, just different proteins and different genes  -

    The concept that molecular mimicry is an important factor in autoimmune disease was first published in 1985 and since that time substantial evidence has accumulated such that it has become the favoured mechanism for causing many autoimmune diseases including MS.

    The concept is deceiving simple but entails a lot of understanding of the workings of the immune system. Basically molecular mimicry means that part of a molecule of a given protein closely resembles a part of another totally different protein. Proteins are made up of strings of amino acids and in molecular mimicry one series amino acids(eg~10) in one protein is very similar to a string of ten amino acids in another protein. Given that there are 20 different amino acids it is a rather rare occurrence to find such mimicking arrangements but many examples have been demonstrated.

    The main types of proteins which came into play in autoimmune disease are:

    self proteins which are part of the human body.An example of this would be myelin basic protein which is the most common protein in myelin;

    proteins of infectious agents such as viruses and bacteria;

    food proteins.For example over 400 different proteins occur in cow's milk and most have over 150 amino acids.

    To understand how molecular mimicry works in the induction of autoimmunity one must understand the basic mechanisms of an immune response to a foreign invader in the body. The immune system recognizes a part of the protein portion of the invader. It does this with T cells which have receptors which bind to short segments(~10 amino acids) of a foreign protein. It is helped in this task by so called antigen presenting cells such as macrophages. A macrophage will engulf a foreign invader(eg a bacteria or food particle) and break it down into fragments. A special molecule in the macrophage then carries a protein fragment(peptide) to the surface of the cell and "presents" it to the millions of circulating T cells. A T cell which has a matching receptor locks onto the presented protein fragment. The T cell then becomes activated and stimulates other portions of the immune system to begin an immune response against all proteins which contain a similar looking amino acid string. The details of what constitutes a similar looking string are beyond this summary but suffice to say it has been found that a variety of  similar, yet somewhat different strings, can be recognized by the same T cell.

    Thus, it is easy to understand how molecular mimicry can trigger an autoimmune reaction. If the protein fragment from a foreign invader which is presented to the T cell closely resembles part of a self protein then the activated immune system will not only attack all foreign invaders which have the same string of amino acids but will also attack a very similar  string in a self protein. It has been shown that parts of proteins in various foods and infectious agents resemble parts of various self proteins. Sometimes a three way mimicry occurs with a protein fragment from a food closely resembling that of an infectious agent which in turn closely resembles part of a self protein. In Celiac disease part of the gliadin molecule (found in various grains such as wheat and rye), part of adenovirus 12 and part of a gut protein all closely resemble each other and the result of such mimicry is an immune attack on the gut when food containing gliadin protein  is eaten. A similar three way mimicry occurs between a cell wall protein in grains and legumes, part of the Epstein Barr virus and part of the collagen in joints. This leads to rheumatoid arthritis in genetically susceptible people. For type 1 diabetes parts of milk proteins and viral proteins mimic proteins in the insulin-producing beta cells of the pancreas.

    For MS it has been established that numerous viruses and bacteria have amino acid strings which mimic parts of proteins in the myelin proteins of the central nervous system. Undoubtedly food proteins also contain such mimicking protein fragments and thus two and three way mimicry is a ready explanation for why the immune system attacks myelin and causes MS.

    An important part of molecular mimicry is what exact string of amino acids is presented to the immune system because that will determine if part of a self protein is also mimicked or not. That is why MS and other autoimmune diseases are strongly dependent on genetic makeup and why only a small percentage of the population contracts these diseases. Most people do not have genes which result in mimicking peptides being presented to their immune system. A person's genes will also determine which self protein is mimicked and thus what specific autoimmune disease that person gets. People, who have genes such that a myelin protein is mimicked by a presented foreign protein fragment, will experience an immune attack on their myelin which eventually leads to clinical symptoms and a diagnosis of MS. Those who present collagen-mimicking fragments get rheumatoid arthritis.

    Currently most researchers are concentrating on infectious agents as the main drivers of molecular mimicry despite the strong evidence that food proteins also supply appropriate mimics. In fact it is likely that food proteins are the main mimics in some cases because the geographical distribution of diseases such as MS and type 1 diabetes closely follows differences in dietary habits rather than differences in infectious agents. Of course it has been established that food proteins are the driver of Celiac disease, one of the few autoimmune diseases for which the cause is known.

    In summary, molecular mimicry is currently the best  explanation for why the immune system attacks self tissue in some people. When all is said and done it just comes down to a case of mistaken identity in which the immune system in genetically susceptible people mistakes part of the body for a foreign invader. Below are some medline abstracts on the concept of molecular mimicry.

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  • Posted

    Thank you Rose, Popeye, and TreatMeGently for your comments. TreatMeGently that was a great explanation about molecular mimicry. I was wondering why some people get MS, some Diabetes Type 1, and some Rhuematoid Arthritis. So correct me if I not getting this right, but the bottom line is food proteins are activating an immune response and the immune cells are attacking healthy tissue mistaking it for a foriegn invader due to this molecular mimicry. And the differentiation of which healthy tissue is being attacked or what self protein is being mimiced determines what autoimmune disease you get and that is determined genetically.

    TreatMeGently in response to your question about am I following diet changes, I am. Right now I am eating primarily fresh organic veggies bought at a local farmers market, lots of avocados, quality meat protein from grass feed beef, lamb, wild caught alaska salmon, cage-free chicken. I am attempting to totally avoid Gluten, Dairy, Sugar, Caffiene, Alcohol, Legumes, and Grains. I am going to see how this works for a while.

    Am I correct in my understanding that you have not took any drugs for AS for over 2 years? I have been experiecing this disease for about as long as you have, 22 years. On another forum an individual told me that using diet in place of medication is dangerous and will ultimately lead to irreversable damage such as fusing of spine, neck, hips, etc. He or she said that stopping the pain and soreness is not enough, that once inflammatory lesions are in place and the inflammation does calm down, scar tissue will form then calcify turning into bone. The only way to slow this process down is with the medications. So the take home from what he/she said was using diet as a substitute for medicaiton is setting yourself up for irreversable damage.

    My own feelings on this is wow, that is pretty disempowering and depressing if it is true. Also there is the possiblity that this sort of information serves as a means to scare people into taking medications versus trying some other means of treatment that is more in line with mother nature. There is no doubt that there is a lot of $$$ being made with these medications, especially TNF Blockers. At the same time I realize that TNF Blockers have changed many peoples lives for the better and have made a phenomenal difference in many people's functionality  with the disease.    

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    • Posted

      A up andrew my biggest problem is im lazy dont look on any web sites shud do really cause last two days have been really special so no matter what i take the pain will still have its moment .if i get time over weekend i will have a look at web pages
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    • Posted

      Andrew it is a very valid comment and I completely agree with you regarding the disempowering and depressing nature of this illness. It is very important to try anything that you feel will work, and for you, it might work brilliantly. I think AS is quite a personal experience, everyone seems to have different pattern, and different levels of experience, pain and fatigue. So therefore it is possible that the solutions will vary too.

      I am not an AS consultant, but I have been seeing the leading AS specialist in the UK for two years now ~ his name is Raj Sengupta and it is worth looking him up if you live here, as he is a BRILLIANT and thoroughly competent consultant, and has been a complete godsend in the AS minefield ~ he has been so supportive, informative and gentle, he is involved with all of the trials and the research here as well. 

      The explanation about starch free diet has really captured my attention as well, and thank you to Treatmegently for sharing this with us. My god we could do with more doctors whom were this informed and so switched on. It takes on average a patient here nearly ten years to be diagnosed and most GPs haven't a clue what to suggest. I am also giving the starch free diet a try ~ I am an organic vegetarian, and so I am very healthy anyway, but I have not followed the starch diet before. Lets see how it works for both of us Andrew. I so hope it does! My baseline is very low I am in a very bad place indeed, so it will be easy to see any kind of improvement. I am just about to start anti-TNF and so I am willing to try anything during this last phase.

      I will share my consultant's view, he does not think there is much merit to the low starch diet, having followed lots of patients who tried it for many years (and we have to accept that many will not have done it properly) and also the various different suggestions about dropping tomatoes and citric fruits etc. It is always questionable as his job relies on the likes of me propping up his lovely large house and school fees, however he is without doubt an admirable, and I believe honest person and would never allow for patients of his to suffer so terribly if the cure was as simple as starch or lack of. So I have my doubts, I must say, but I hope I am able to post positive results and will keep an open mind. 

      The one thing I know categorically if you are looking for something empowering and something we can all do religiously and with great results which is largely agreed by every specialist in the land, is exercise. The more I exercise the better I feel ~ it is literally the only thing that has worked for me in all these years. I have had AS for coming up for eleven years and the last two have been horrendous. There is nothing better for the condition or for your state of mind than the ability to still exercise.

      Lets keep in touch and share any news we find smile

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    • Posted

      Hi Andrew,

      I have not been on anything for my AS for well over 2 years - and I now don't take even an Ibruprofen for any reason - I have put up with 2 flare ups and quite a few bad headaches (mostly from a hangover).  I decided gut health is more important to me - I have noticed arthritis flare-ups worsen 2 days after taking Ibruprofen, I didn't want to keep taking them, then ruin my intestines with more intestinal permeability.

      It is the same with Methotrexate - this drug is used at the drop of a hat for AI disease - but is proven to cause increases in intestinal barrier - it stops the symptoms but make the long term disease worse. 

      I think Rose is sceptical - but I have opened my heart and given her my background of pain I have suffered via a PM - and I am not claiming a cure here.  People are free to believe what they want - but tend to trust authority like their doctor and health professionals.

      Mainstream doctrines are so set - with a pill for an ill and the paradigm shift required is too big.    

      Take Rheumatoid Arthitis as an example - there are studies online that show that Citrullinated Proteins build up even 10 years before the onset of disease - these then lead on to a process called Epitope Spreading and further molecular mimicry.

      They have known for at least 20 to 30 years that protein citrullination (which BTW is similar to protein deamination in Celiac) happens when a gingivitis oral bacteria binds to other proteins and modifies them - and makes them more likely to cross react to human tissues.

      This is borne out by there being 1000s of people taking low dose antibiotics for RA - usually Minocin / Minocyline with many finding remission - and interestingly Minocin is active against the gingivitis bacteria.  What do most mainstream UK doctors do - cover their ears and eyes and carry on doing what they always have done.

      For me i's as simple as this - if a doctor believes that molecular mimicry with environmental proteins are the cause of your autoimmune disease then they should not be switching off the immune system.

      A doctor gets 2 weeks training in 8 years for the role of diet in health.

      The tide is changing rapidly - as nearly every medical study on autoimmune disease now focuses on the role of gut bacteria as either the antigen or as imbalance in the microbiome causing a lack of regulation of the immune response - and most mention diet as key to this!

      Figure this - your are 4 x more likely to develop celiac disease if you are born by Casareian Section - because you do not benefit from the bacteria in the birth canal.... and you must have seen the stories about fecal matter transfer (yuck... but it tells a story).    

      Your diet sounds great and will cost you nothing to try - anyone that starts on Methotrexate or Biologics without giving their gut a good reset with diet change could start what I see at the treadmill of one biologic failing then another.... with many still suffering flares!

       

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    • Posted

      Hi Rose

      Apologies... I didn't read all your post before replying to Andrew... I can see that you are not being sceptical biggrin

      You sound very positive!  Exercise helps me too - I even ran mid flare a few weeks ago with sore hips that were as creaky as rusty door hinge -

      I no carbed the day after for most of the the next 2 days - and started gradually to improve. 

      I ran on BH Monday and got a migraine and couldn't eat but my back and neck was AMAZING - as soon as I ate my dinner later in the day tingling between my shoulder blades, slight spione, neck stiffness!

      It's not just starch - it's carbs that feed the bacteria.  So I guess as a vegetarian I guess its going to be tough and maybe why it has been hard to try before.

      Wheat gluten is an opiod - it is addictive and people get withdrawal.

       

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    • Posted

      Treatmegently ~ I am not sceptical at all, quite the reverse, I am on my second day starch free, as a veggie, this is a challenge, and the smell of the bread for my children was more than I could bear after watching the election late into the night. Actually your post was beyond excellent, and I have learn a a great deal from you reading such a detailed scientific explanation. Given that AS has the capacity to disable and cause endless years of pain and suffering, it is right that you share anything that works, and give others the chance to do so, I commend and thank you for taking the time to do so, and explain it so carefully.

      It is my intention to reply by PM but I am new on here and am yet to work it out!! 

      Maybe on withdrawal and can't think properly (!!) I am going shopping today and making a starch free menu. Will keep you posted and thank you for from the heart treatmegently x

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    • Posted

      Do I really have AS ?? As rightnow I don't have any pain. Are there any chances that I don't have AS ?

      Help me as u have some indepth knowledge. Ty

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