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Re: My Past Week AS and Cardiac Barbara57 09/17/19 04:50 AM
So hard to go through cardiac tests when you’re not sure if it’s anxiety or your heart. The tests themselves always make me anxious! I’ve been there. It has to get checked out and hopefully it’s nothing. You were helpful to me many years ago when I had SVT. And you are always such a great support to everyone on this forum. Good luck on your tests and let us know what you find out.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Potential "Patch" for AS PsSpa_M_1989 09/17/19 04:25 AM
PainintheAS:

I am back from vacation now and had an appointment with my rheumatologist when I came back. She did not reject the idea of "leaky gut" and certain bacteria being involved with AS. She also did not reject the idea that Rifaximin can kill off those bacteria. Also, she said the Rifaximin is prescribed by some "functional doctors" but not by regular doctors without GI-symptoms (which you mentioned).

That being said, I am curious how your trial is going? Are you symptom free? Does your doctors check ESR, CRP, or serum IgA to find out if your disease is currently active?

Thanks,
PsSpa_M_1989
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My Past Week AS and Cardiac WhiteCell 09/17/19 12:34 AM
My neck is my typical area of pain. So last Thursday I was short of breath with neck and shoulder pain the shortness of breath got my attention. I do slow breathing and in a couple minutes it almost goes away. I went in to local MD office and EKG was normal. Rheum suggested ice which helps but the sudden onset of the signs still is there. I feel very "taxed" when it is happening. I am going to my cardiologist tomorrow. The local MD and the RN for the cardio say anxiety but do more tests.

I think any shortness of breath is cardiac but family and MD here say anxiety (I have had unusual stress past two weeks). So here I go. It's been a really good summer and really I cannot complain. But the hospital, the tests, the IVs and the decisions upcoming are daunting. If I need to take time off work that's no fun for us.

Wife says don't tell the kids yet. Why worry them needlessly until we know more....

Thanks for listening.
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Re: Taking Celebrex Daily for a Long Period of Time PainintheAS 09/13/19 08:08 PM
Originally Posted by Imnotsure

A new supplement I'm gearing up for is Butyrate. I'm going to be doing high doses of this supplement as it has been very promising for other autoimmune diseases and several other symptoms caused by the autoimmune disease such as depression, anxiety, ulcers, oxidative stress. From what I read like all supplements claim this is the Holy Grail. On a side note 905% of all supplements is a waste of money.


Be VERY careful with Butyrate. I've used it to help my guts too. However, tons of research shows time and again that a little Butyrate is good...and a lot can do much more harm than good and increase intestinal issues. I'd suggest starting low, and building up until you feel good, and stopping there. Propionate is another helpful item. Firmicutes and Bacteroidetes are the two classes (at a high level) of bacteria found in the gut. In HLA-B27+ people (such as myself) the ratio of these bacteria is skewed so that the production of butyrate and propionate is skewed in comparison to acetate. It makes perfect sense that too much acetate would be detrimental to the lining of the guts. Without the propionate and butyrate as an energy source for the intestinal cells (crypts etc.) then you will have breakdown. Add acetate in higher concentrations to the mix...and you have a recipe for disaster. Take a look into propionate, too. There a good deal of studies showing the firmicutes/bacteroidetes ratios being out of balance, what each produce and, subsequently, their effects on intestinal health. I found that sometimes taking butyrate can actually make me worse. So, word of caution, as well as a recommendation to check out propionate as well. Good luck!
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Alternative Treatment / Diet Discussion Jump to new posts
Re: Low Starch Diet vs. Gluten-Free Diet Alice10 09/10/19 03:42 PM
Hello Imnotsure,

Thank you for explaining your comment, I understand what you mean now. I don’t see this as you, but that’s ok. You’re pro-meat and I’m not, so let’s just leave it ;-)
I just want to add though, in case other persons than you and I are reading this thread, that vegans don’t “rewrite articles” on their favor. 99% of vegetarians/vegan are just trying to be more respectful toward the nature and the environment (refusal to take part of inhumane factory farming; respect all lives, meaning not killing animals while you can eat other food; reduce the impact of animal agriculture on the environment; etc.).

Thank you very much for your explanations about your diet. I’m very glad for you that you don’t have any deficiency. It does look like this mono-diet is working for you!

I like when you say that you started by trying to fix the disease and then you realized that you need in fact to fix what caused the disease. That’s what I would like to do as well, avoiding the inflammation by changing my diet rather than fixing the inflammation (once it’s already there) by taking meds.

I see that you’re doing a lot of sport, that’s so great. I miss exercising...

Oh yes, I guess your diet must be sometimes difficult when you go out... Just being a vegetarian brings a lot of comments and criticism, so I can imagine that your diet must bring so many (unwanted) comments and remarks... But I’m sure you’ve learned to cope with it or at least ignore it.

Yes, I know that when you’re in great pain, you would do pretty much anything to get better. I’m happy for you that you’ve been able to find what makes you feel better :-)

I wish you the best,

Alice
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Re: Anyone have mri without contrast for AS Winston 09/09/19 07:02 PM
ZeldaLady, see http://enthesis.info/spondyloarthritis/back_pain_and_normal_mri.html

My MRIs (with contrast) are always normal too. Nevertheless, I have a formal AS diagnosis, and my insurance company never balks at paying for my biologic therapy.
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Re: Low Starch Diet vs. Gluten-Free Diet Imnotsure 09/09/19 03:00 PM
What i meat from a comment is that we are told the dangers of meat over the years. you have vegans taking studies and articles rewriting them in their favour. now don't want to get into the politics of this so as for my deficiencies I have none.

I have my blood work every 6 months monitored by my RH to ensure the medication meloxicam that I'm taking it's not taking a toll on my body and regular AS symptom side effects.

Out of the 20 blood test I have accumulated over the years a few things have gone up and down but it was nothing to be concerned about. For example my creatine was low on blood test but it was fine the next. my cholesterol which I'm sure everyone always asks about is fine. My cholesterol is at 450 which may seem high but it's not. Your cholesterol can you jump 20 to 300 points before and after a meal and they really have no way of measuring cholesterol. When you dive deep into what cholesterol does we actually need this. Cholesterol is far from bad.

Now I don't eat just beef I do eat other things to supply nutrients. Meat itself you can survive just fine but if you want more nutrients you have to eat other things.

So this is what I eat. I eat twice a day. Mainly prime rib because it is 30% fat which is my fuel. Depending on how extensive my activity is that day I will eat more fat from a jar that I make myself for energy production. I eat my beef blue. Meaning I only sear the outside at high heat to kill off the bacteria and the middle is basically raw cand it is freaking delicious. If you eat meat grey or done, you destroy all the nutrients which is why you have to eat things blue because cooking it destroys their nutrients in the meat. I do eat eggs every now and then. Every two days I eat cod liver and its own oil. It is high in omega-3. If you take fish oil or cod liver in pills it's already rancid and oxidized and does not do anything. Its awaste of money. I do eat oysters for zinc and in turn increases your libido. Having this disease kind of destroys that.

So, my blood work is perfect and above. My kidney and liver function is above-average. I my inflammatory markers are normal. My vitamin c which people always ask about when eating meat is normal because meat has vitamin c in in it but again when you overcook it you destroy the vitamin c which is why you have it blue. I'm at the point now where I literally crave meat and fat.

Between the prime rib and cod liver, oysters is more than enough to have all the vitamins and minerals you need.

I am not the only one on this diet. There are hundreds and thousands of people that do this to control their autoimmunity diseases. The diet information for ankylosing spondylitis is outdated. It says to stay away from red meat and high-fat yet here I am and hundreds of other people thrive off red meat and high fat omega-3. Stay away from Omega 9 as that is the worst fat for your body for anybody which causes severe inflammation for those with autoimmune diseases. Like peanuts is high in Omega 9 then omega-6 and very little omega-3.

I do take other supplements stop replace the oxidative stress caused by ankylosing. what if I told you I figured out the fatigue that we all have with AS? I did because I'm a motherfuking badass 😏
now it may not necessarily work for other people but it definitely works for the people that I help with her AS.

See when I started my journey tackling this disease I was trying to fix the disease. Stop AS itself. But I realize it's not possible so I change my my research and started to Target things that need to be fixed caused by AS. Our bodies use up so many resources combating this disease because of the pain and inflammation. if you're not replacing has been completed your symptoms are rolling going to get worse so I am replacing what a s is taking away and this is why I'm in literally no pain and almost in complete remission.

I go running, I go mountain biking, I went waterskiing over the weekend and we all know how hard and strenuous water skiing is on your back. I'm shredded and I don't workout but because my job is extremely physical I do about 20k to 30k steps a day. prior to all this and being on tnf blockers I could not do any of this. Let alone get out of bed.

each time at the end of my rheumatologist appointment she says when do you want to schedule and is there any point? And I say to her while we'll keep it at 6 months because something could happen something could change so I'll see you every 6 months.

Some other benefits now point out being on my meat diet. Iglo, I look younger, I have absolutely no body fat on me at all. when you are on a high-fat and no carbohydrate diet you do not store fat. I am 5-11 and I was at 180 lb and now I set on average 145 to 150. I'm usually 150 at the end of the day after Ive eaten in 6 lb of beef.

Have not been sick or taking a day off work for anything medical and over five years now. No cold no flu no nothing. I have three kids and dog and cat and a wife and they're always getting sick. I used to get sick a lot before this. I used to get cold sores and then when I switch to meet my no longer get them. With this by fluke? Coincidence? I don't know other than this is a little thing that I noticed. Cold sores are usually caused by stress induced and if you remove the stresses in the oxidative stress in your body while it should keep the cold sores from breaking out cuz that seems to be logic.

Eating this way can be tough sometimes mentally. I won't lie that I have broken down crying that I miss pizza or my favourite ice cream which was chocolate peanut butter Haagen-Dazs. It took me almost 2 years to not cheat when I first started doing this. And has nothing to do with willpower has to do with old learning to do this way because it completely changes your life and your social life. I carry a barbecue in my pickup truck so I can cook my lunch or if I go to a wedding or anywhere so I can eat. going to parties weddings or social gatherings is tough because you can't eat and you can't drink. As long as I have distilled alcohols I'm okay but I'm not a hard liquor drinker so it's tough down whiskey all night so I just don't do it. I do make beef jerky for snacks got to take a long when I go mountain biking or any sports we're on unable to eat a meal right away.

But when you're at the point that you're in so much pain that you have thought about taking your own life just to get away from it; this is how I'm doing this mono diet.

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Re: Anyone have mri without contrast for AS Alice10 09/09/19 12:14 PM
Hello,

I'm not sure my reply is going to help you much, but I did have 2 MRIs to confirm/rule out AS and both came back negative. They haven't used any chemical (contrast or else). My MRIs were full spine and SI joints.
I have debilitating pain (back + several other joints) when I'm not taking NSAI, but since we don't see anything on the MRI and I'm HLA B27 negative, I don't "officially" have AS (and I'm not allowed to receive the biologics for example).
So, to answer to your question, it's possible to have AS and have clear MRIs.
When I got my MRI results, I've had mixed feelings... On one hand, I was relieved that there was no damage (for the moment) on my joints. But on the other hand, I wanted a "proof" that my pain was real...
Have you had the HLA B27 genetic test?

Alice
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Re: Low Starch Diet vs. Gluten-Free Diet Alice10 09/09/19 12:03 PM
Hello Imnotsure,

I'm not sure I fully understand your enigmatic comment. Do you mean that I'm puzzled because of "something taught"? Would you be so kind as to elaborate your comment, I would really appreciate it as I still don't know whether or not you have deficiencies with your mono-diet. And I think it would be very interesting for whoever would like to try the same diet as you. Thank you in advance :-)

Hello Vosadrian,

Yes, if you just want to find out if diet is a factor, that diet might be really useful. It's probably a good starting point. I've also considered fasting for a few days in order to find out if diet was my issue, but I was a bit concerned about fasting while working full time (since I'm already really tired because of the disease).
Let us know about your findings once you'll have tried this mono-diet :-)
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Taking Celebrex Daily for a Long Period of Time Imnotsure 09/09/19 11:51 AM
Originally Posted by PainintheAS
Originally Posted by Imnotsure
Originally Posted by theyoungestmuse
I can't get off the celebrex either. I am going in for colonoscopy and upper GI in 2 weeks because of it. I actually only take 100mg per day but it also helps fatigue and depression. I have taken pretty much every NSAID out there except diclofenac. I have about five RX strength NSAIDS in my med collection. Meloxicam was what I took while working full time but now it messes with my stomach too much. The absolute best were Vioxx and Bextra. As for as side effects I worry more about my kidneys. My dad had had horrible ulcers from his naproxen habit. Danielle


I don't have anything to back it up other than what I had done over the years. Prior to my diagnosis of having AS symptoms for 20 years I took Advil, then I went on Dicofinac, then celbrex and bounced around on all of the medications. Out of those 20 years I took 6000-10000mg of advil a day for 14 years. Through blood work and other tests I have zero damage to my stomach, intestines, kidney and liver. Lucky? Genetics? I don't know. But I knew that taking this much in high doses would cause damage so I did take Gastro from AOR every day, Agmatine and Glycine. These three things claim to help protect you against damage from these types of medications.


That is VERY interesting. I wish I know about Agmatine and Glycine (probably Glutamine too) when I was prescribed tramadol after injuring my knee very badly (requiring a major surgical repair.) Three days after taking tramadol and my back pain started to become extremely evident. I even warned them that this was unwise to give me oral meds for pain...but NOOOOO...a regular citizen can't be well-informed about this kind of thing. lol


Agnatine is a great supplement. Reduces tolerance to morphine, opioids THC. Also it makes the THC stronger, last longer. It makes all pain and anti-inflammatory medications last 2-3 hours longer. I never noticed any side effects with the medications lingering longer in my system. Agnatine helps every so slightly with some nerve pain but its nothing special.

a few years ago I was able to uncover a study where they put agmatine into a solution and administered it through nasal. because I'm constantly reading reading up on and testing supplements. I do the best I can with safety in mind but sometimes things don't go as planned. I made my nasal solution from agmatine putting it into a nasal bottle and administered it that way. And wow did I go for a ride. I had an entire body Buzz for a few hours and then when I was taking my THC for sleep it was amplified by like by a lot it was really really strong. After the third night of administering agmatine this way rather than taking it orally I had to stop taking it nasally. it gave me vertigo really bad for almost a month. During the day I was fine but if I had my head tilted for too long on an angle and then moved I would get vertigo. waking up and getting out of bed I would topple over if I didn't give myself a minute to collect my head from spinning. But those symptoms subsided and i guesd why that study really never came to public or a way of administering agmatine. Taking it orally is the preferred way as they've been doing for a long time.

L-glutamine is a waste of time in my opinion. I found it aggravated my AS. I run a 100% clean diet when I test my supplements so that this way I know exactly what it's doing and doing this for 10 you're so tuned with your body you know exactly what's happening and why for the most part.

GLysine is a great amino acid that we do need. It helps with connective tissue repair and inflammation. But it's not groundbreaking . However I found it never really did anything for inflammation. What it has done for me was protect my stomach lining from medications and helps with sleep.
I also use it as a sweetener when I make a treat every few months. I make ice cream with 35% grass-fed sheep cream which is super high in nutrients out of all the milks and tastes awesome and the thickness is gorgeous because it's creamy, I add cherry tart powder which is freaking awesome for killing an AS flare up. Cherry tart powder compliments celebrex. During my journey I used to use as combination but I no longer do as I've come across better through my regime of supplements and diet. But again cherry tart powder is extremely effective. I add two eggs and two to three scoops of glycine as the sweetener. My wife uses glycine now when she bakes for the kids rather than use sugar. Glycine is healthy for you, we need it, so to have it an ice cream is a bonus. how awesome is it when you're getting a little bit of pain and you can have a bowl of ice cream and feel better from inflammation?


A new supplement I'm gearing up for is Butyrate. I'm going to be doing high doses of this supplement as it has been very promising for other autoimmune diseases and several other symptoms caused by the autoimmune disease such as depression, anxiety, ulcers, oxidative stress. From what I read like all supplements claim this is the Holy Grail. On a side note 905% of all supplements is a waste of money.
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Alternative Treatment / Diet Discussion Jump to new posts
Re: Low Starch Diet vs. Gluten-Free Diet vosadrian 09/09/19 05:48 AM

Originally Posted by Alice10

Hello Vosadrian,

Be aware that this mono-diet (meat) will only let you know if your symptoms are coming from food. It won't tell you if the issue is carbs, gluten, dairy, soy, conservatives, additives,...
As I said to Imnotsure, I don't know how you can cope with the deficiencies that this mono-diet would necessary bring.
I hope you will find a diet that is going to make you feel better :-)


For me it is an experiment. Nothing intended to be long term. I just want to find out if diet is a factor in my symptoms. Best would be a long term water fast. I can probably do up to about 5 days of that and I may start with that. After that I want to go through a period of time with absolutely no chance of any starch. Meat seems like a good way to do this without wondering about other stuff which could have starch. If I feel better, I start reintroducing foods to determine which ones make me feel bad again.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Anyone have mri without contrast for AS ZeldaLady 09/09/19 12:21 AM
Thanks for the info and reply.

I had my mri today and they ended up doing the contrast. They said I had to have it to see what they need to. So I got it and my results are already available online. I haven’t heard from the doctor yet but read the results and pretty much googled my through interpreting it. It basically says it doesn’t show any inflammation in my SI joints. I’m so confused. My back hurts so badly and had for years and it’s clearly in my SI joints. It showed mild degenerative disk disease in L4 and 5 which has some change from last year. So I understand that as arthritis that has gotten a little worse since last year. It also showed possible intraosseous hemangioma. I think this is a benign tumor on L4.

If anyone understands any of this any guidance would be awesome. Has anyone else had a mri and it not show inflammation. I’m really confused. Only thing I know for certain is my back hurts. A lot. I’ve basically been living on a heating pad for weeks.
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Re: Viable jobs with Spondylitis/Enthesitis pain? Mary Beth 09/09/19 12:06 AM
I would suggest that unless you are near retirement age, please try your best to find some combination of new work duties and medication that allows you to stay employed. Many people find going on disability to be depressing. My own point of view was always that I was in a lot of pain whether I was at home or at work, so staying home did not solve the pain issue. This was before I knew what was wrong and I've had good success with the biologics.

I can't stand for more than about 5 minutes so a job requiring me to be on my feet would not work. I can walk for miles though. I can sit as long as I get up every hour or so and move around. I can type if I have a good keyboard set up.

Have you tried to work with an employer? Many many companies now offer thorough ergonomic evaluations because they find otherwise the cost of paying for physical therapy for their damaged employees gets quite high. For myself a sit-stand workstation with a good chair was enough to allow me to work. Customer service jobs are quite common and while they are not fun, they usually require some typing but not the level of data entry.

What is your background? What is your education? Can you switch jobs? Get another degree? I know it seems intimidating but there are quite a few jobs (management, training, etc) that allow you to change position frequently, give you some flexibility in whether you are sitting or standing or walking, don't require intense amounts of typing, and may even allow you to work from home at times.

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Alternative Treatment / Diet Discussion Jump to new posts
Re: Low Starch Diet vs. Gluten-Free Diet Imnotsure 09/08/19 04:52 PM
Originally Posted by Alice10
Hello Imnotsure,

You've been eating only beef for several years? You don't have deficiencies? I wonder how you can get enough vitamins, fibers, antioxidants, minerals, ...? It really puzzles me.


It's because this is what were taught.
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Re: Low Starch Diet vs. Gluten-Free Diet Alice10 09/07/19 06:11 PM
Hello Imnotsure,

You've been eating only beef for several years? You don't have deficiencies? I wonder how you can get enough vitamins, fibers, antioxidants, minerals, ...? It really puzzles me.
I find it a bit sad that you restrict yourself with this mono-diet. All the other food (fish, fruits, vegetables, oil, herbs, legumes,...) are making you feel sick?
Concerning the articles, I find them interesting so that I don't have to start experimenting from scratch. Of course, you must check if the info are reliable. Thanks to my education, I'm lucky enough to know whether the info are reliable or not. I think that articles allow the global community to share crucial info and make progress.

Hello Vosadrian,

Be aware that this mono-diet (meat) will only let you know if your symptoms are coming from food. It won't tell you if the issue is carbs, gluten, dairy, soy, conservatives, additives,...
As I said to Imnotsure, I don't know how you can cope with the deficiencies that this mono-diet would necessary bring.
I hope you will find a diet that is going to make you feel better :-)
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Viable jobs with Spondylitis/Enthesitis pain? Winston 09/07/19 01:37 PM
Alex140, who told you that? Was it, perhaps, some attorney you were consulting? When Social Security sends you for a consultative exam, they pay for it, not you. And when you have a long, well-documented medical history, consultative exams usually aren't even necessary. (Occasionally you will draw a bad judge who might order one, but it's not typical). If you absolutely must have that form filled out, you can just take the form to your own doctor to be filled out.
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Re: Anyone have mri without contrast for AS RAHMBA 09/06/19 07:01 PM
I'm not able to answer your question regarding dyes. I do know it's important to do a T1 & STIR. The favorite source of information on MRI & spondylitis is from Dr. Maksymowych. this is a terrific webinar he did on the subject: https://www.spondylitis.org/Seminar...nd-spondyloarthritis-webinar-maksymowych

hope it helps,
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Anyone have mri without contrast for AS ZeldaLady 09/06/19 10:56 AM
Hi there. So recently I’m having quite a flare up. I seen the rheumatologist a couple weeks ago. It’s only my second visit with her. I’m not sure how I feel about her yet. She did order several tests: x-ray of my collar bone with steroid injection, mri and x rays and blood work for vitamin d. I’m happy about that but here’s the thing, I’m not crazy about having the contrast dye for the mri. I know for most this isn’t a big deal but I’m extremely hesitant when it comes to medicine and being that it can have terrible side effects I would rather have the mri done without the contrast.

My question is, has anyone had an mri without contrast that was able to detect ankylosing spondylitis? When I called the doctor and told them this the receptionist was pretty nasty with me and said that the doctor wouldn’t be able to see what she’s looking for and my insurance might not cover it unless I get it and why can’t I just take Benedryl and have it done.

My mri is 2 days from today so I’m hoping someone here has some input before then. Anyone have an mri without contrast that was any help?
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Re: Sulfasalazine for Peripheral AS PainintheAS 09/06/19 05:48 AM
Originally Posted by achala
Sulfasalazine 3mg a day worked for me, I was finally able to fix that bursitis in the left retro calcaneus. Seems Sulfasalazine has some anti biotic that helps to regulate the microbiome. cant take it a the moment due to pregnancy planning.
anti inflammatory works for me only as pain relief and usually when I switch to it i get uveitis some time later and I have to start prednisone

now I am experimenting with enhanced bioviabilty curcumin, to kill uveitis flares (too early to say)...and some Omega 3 but taken with sesame oil to kill the omega 6 effect

for me if not for the uveitis i would be able to cope with 1 COX 2 inhibitor per week, because I do pilates/yoga 6 times per week + 4 sessions of 30 min swimming, also started surfing classes (isn't that insane!). the fuk up in my case is that persistent iritis which cannot go on without meds at this moment. and when it begins, noninflammatory is not enough!

that why I will try this stuff from Monday, ordered from Italy, but there is also US shop.

https://clinicaltrials.gov/ct2/show/NCT03584724

my rheumy, says for AS I wont get Humira because my CRP is <15 (protocol), I have like 6 or smth at the moment. I could probably be able to increase it to 15 with some techniques, but I guess there is a reason for everything.


Generally, eye symptoms are related to antigens and other markers in the body that are in response to bacterial agents. It would make sense that NSAIDs might cause this to happen if you have intestinal permeability issues. You could look at my post about the link between AS, AAU, ReA, and other SpA's and the way I am looking at treatment here: Link

Might be interesting to you =)

Also, Norflo Oro is a curcumin supplement that is delivered via a phospholipid encapsulation. This is related to the newer generation of curcumin delivery technologies. I have recently heavily researched this and am using CurQFen, which is essentially the same thing but bound to Fenugreek fibers. I've tried CurcumRx, CurcuWin, and Theracurmin as well. CurQFen causes little to no stomach upset for me. CurcumRx put me in crisis mode and I felt like I wanted to die! I even passed out because I could not remain awake. It is just super powerful and harsh (it contains ALL of the terpenes, sesquiterpenoids...EVERYTHING). I would recommend trying to get your hands on CurQFen or Theracurmin HP if you want to check out the viability of these products for your eyes. I can tell you that it helps with my AS pain tremendously and my eyes (I don't have AAU but episcleritis) did seem clearer most of the time.

Hope this helps!
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Re: Sulfasalazine for Peripheral AS PainintheAS 09/06/19 05:45 AM
Originally Posted by kc119
Hey! I tried indomethacin, celebrex, and another one can't remember at the moment for nsaid, all of them made me sorta spacey with brain fog with not much pain relief so i stopped after about 4 days. Muscle relaxer didn't work either.


Symptoms of brain fog can either come from your body clearing chemical waste (if a drug is toxic to you) or from a leaky BBB. I would recommend trying to take a dose of GABA and see if you also get an effect. If you do, this would be a confirmation that your BBB is leaky as, normally, GABA is not able to cross the BBB. It is actually synthesized in the brain but cannot get in from the outside.
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Re: Taking Celebrex Daily for a Long Period of Time PainintheAS 09/06/19 05:43 AM
Originally Posted by Imnotsure
Originally Posted by theyoungestmuse
I can't get off the celebrex either. I am going in for colonoscopy and upper GI in 2 weeks because of it. I actually only take 100mg per day but it also helps fatigue and depression. I have taken pretty much every NSAID out there except diclofenac. I have about five RX strength NSAIDS in my med collection. Meloxicam was what I took while working full time but now it messes with my stomach too much. The absolute best were Vioxx and Bextra. As for as side effects I worry more about my kidneys. My dad had had horrible ulcers from his naproxen habit. Danielle


I don't have anything to back it up other than what I had done over the years. Prior to my diagnosis of having AS symptoms for 20 years I took Advil, then I went on Dicofinac, then celbrex and bounced around on all of the medications. Out of those 20 years I took 6000-10000mg of advil a day for 14 years. Through blood work and other tests I have zero damage to my stomach, intestines, kidney and liver. Lucky? Genetics? I don't know. But I knew that taking this much in high doses would cause damage so I did take Gastro from AOR every day, Agmatine and Glycine. These three things claim to help protect you against damage from these types of medications.


That is VERY interesting. I wish I know about Agmatine and Glycine (probably Glutamine too) when I was prescribed tramadol after injuring my knee very badly (requiring a major surgical repair.) Three days after taking tramadol and my back pain started to become extremely evident. I even warned them that this was unwise to give me oral meds for pain...but NOOOOO...a regular citizen can't be well-informed about this kind of thing. lol
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Taking Celebrex Daily for a Long Period of Time PainintheAS 09/06/19 05:39 AM
Originally Posted by theyoungestmuse
I can't get off the celebrex either. I am going in for colonoscopy and upper GI in 2 weeks because of it. I actually only take 100mg per day but it also helps fatigue and depression. I have taken pretty much every NSAID out there except diclofenac. I have about five RX strength NSAIDS in my med collection. Meloxicam was what I took while working full time but now it messes with my stomach too much. The absolute best were Vioxx and Bextra. As for as side effects I worry more about my kidneys. My dad had had horrible ulcers from his naproxen habit. Danielle


Diclofenac (Voltaren if I am not mistaken) is a BEAAAAST. However, it was very harsh on my gut. I happened to check the symptom list online because literally 15 minutes after taking the pill and having food, I started to get a scratchy throat. Then, I developed a sickness which I believe was strep throat or something similar. The symptom list said online that first time users that are male and within my age range can develop strep. This caused me to go off on a long research theory about inflammation and how it helps the body keep certain bacteria at bay, etc. I also have a post, if you haven't read it, on this forum that might be worth your time. It's an alternative approach to treatment with NSAIDs/biologics.

Here is the post: Link
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Alternative Treatment / Diet Discussion Jump to new posts
Re: Low Starch Diet vs. Gluten-Free Diet vosadrian 09/06/19 03:41 AM
I'm thinking of trying the meat/water diet. I've tried the whole food plant based (WFPB) for several months with no benefit. I should note that I am not diagnosed with AS, but have many symptoms. I've tried many medications (MTX, Enbrel, Cosentyx) without benefit. I don't know what is actually going on with me. The reason I mentioned that is because WFPB may be a great diet for AS... it just does not help me with my issues.

I have not yet done NSD. It looks a little difficult to manage (for a newbie) if trying to include a wide variety of foods. You may unintentionally ingest starch and come to a wrong conclusion about the diets benefit to you. My thinking was just eating meat and water for a month or two should give me an idea if NSD works since meat is NSD. Then if it is making a difference I could look into reintroducing other NSD foods to find a diet with more variety that is more long term manageable.

With eating just beef, do you take any supplements? Also I am fairly athletic (cycling 5-10 hours a week at high intensity), and I rely on carbs for energy for this currently. Would I have to adjust the way I do this being on a no carb diet?

I am sure I would get sick of meat, but I can do it for a month or so as an experiment.
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Alternative Treatment / Diet Discussion Jump to new posts
Re: Low Starch Diet vs. Gluten-Free Diet Imnotsure 09/05/19 04:10 PM
Originally Posted by Alice10

***As of today, I'm gluten and dairy-free!***

Hello Larry,

Thank you also for your thoughts about the vegetarian diet. I'm vegetarian for ethical reasons and not for health reasons. I'm really not an expert in nutrition, but from what I've read/heard, meat isn't so good for your health. t.


I eat beef and drink water only. I've been doing this for years and I'm far healthier on this than eating carbohydrates in plant material. I do this to reduce my inflammation significantly. If I eat a regular diet of carbohydrates and plant material I have to go on tnf blockers as my AS becomes out of control. If I only eat meat I can control my using meloxicam. And my health is really good. when it comes to reading about what diet works best I never read articles because every single article is just from the other article. Someone takes a study interprets it, posts it and then everyone takes that article and then adjust that into their own words weather truth full or changing the wording to skew the results.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Taking Celebrex Daily for a Long Period of Time WhiteCell 09/02/19 01:32 PM
I would ask your doctor if a CT of your abdomen is warranted. It can detect gut issues before they become problems.
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