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

Ok some of you are saying Celebrex makes disease process worse. WHAT??? My doctor said it is important to use anti inflammatory medicines to control inflammation because inflammation does damage to joints. I don't understand what you are saying. I am 19 and he keeps telling me that if I don't control the inflammation I will not be walking by the time I am 50. I already have damage to both SI joints. I am confused!!!

Listen to your doctor. There is a small group who firmly believe that "NSAIDS accelerate AS." This belief is usually based on personal stories they have read here or their own personal experience of their disease worsening as they aged while taking NSAIDs. There are no peer reviewed studies to support this conclusion. In fact, there are a few (small and limited) studies that indicated that consistent use of NSAIDS could slow down progression of this disease. If you are uncertain, the best person to seek this sort of advice from is your rheumatologist.

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Hi, Little_Katy:

I have no experience with Celebrex, and believe it can be used for small periods of time for breakthrough pain management.

NSAIDs as a class, however have been shown to increase intestinal permeability and this fact does increase AS activity. Also, in the studies ATTEMPTING to suggest that NSAIDs have some disease modification capability, the results actually demonstrate the exact opposite: Whether the drugs are used on-schedule or sporadically, they not only do not prevent, but potentially promote damage.

My experience is with the older, non-selective NSAIDs. They control pain very well, but greatly accelerated my AS but in my situation, it was other factors that gave me the worst case possible (vegetarian). And these added myriad digestive tract issues, including gastritis and severe proctitis; it was very obvious they were damaging me. I found at that time that NSAIDs were responsible for 44,000 deaths yearly from spontaneous ulceration.

Many years later, upon learning the cause of AS, the pieces fell into place: The intestinal damage caused by NSAIDs had caused my AS to advance. I will not here go into the details of just how deformed I am due to this acceleration, but it is something that nobody should experience (well, except child molesters and terrorists).

NSAIDs are NOT treatment, but palliative pain management. They are perhaps suitable for mild cases of AS, but the question looms large: Will "mild" turn to "moderate" then severe because of this drug? People get on NSAIDs and just as I experienced, needed stronger dosages and then different NSAIDs just to keep at the same level of discomfort; a downward spiral that will result in eventual disease acceleration.

In fact Dr. Mercola has some very good suggestions to try instead of NSAIDs and these are very effective in my own experience. But if You really want to control the inflammation, it is best to attack AS at the root--diet. I understand just how difficult that is for a young person, especially when all the convenient foods are right off the list; it is very frustrating. But the fact that You are young can be in Your favor: Overcome AS right now and it will be a minor nuisance instead of a career!

HEALTH,
John

All I know from personal experience is that NSAIDs did make a huge difference to my daily function and pain. I believe a lot of my pain comes from inflammation, and hitting that with antiinflammatory meds worked. The only reason I stopped taking them was the usual stomach problems, but I didn't give up easily - I did try a number of different NSAIDs (5 or 6 in total) before I called it a day. Personally I'd rather be on antitnfs than anything else for this disease, but I'm not eligible for them in the UK. In a lot of places you have to exhaust NSAIDs before you can jump to antitnfs, and in the UK at least, that protocol is backed by evidence based recommendations. They wouldn't be doing that if there wasn't some evidence that NSAIDs are useful first line treatment.

Talk to your rheumie. Ask what other options there are. Ask about potential side effects of all the options as well as potential benefits. People on this group (including me) will always put forward their own personal views, but it comes down to what you feel comfortable with, based on what your clinicians are advising, not what other folk are saying.

I think GI toxicity as a principle is best avoided with this disease. But if they must be incorporated I'm sure there are measures one should take to minimize their risk of poisoning.

I am on the no starch diet
it worked for a while
but still doesnt stop the flares .when i do things it flares
I Take 8 steriods a day Iam on my thrid tnf blocker still
not working /.any advice?

Hi, cyborg:

You have many options and the first I would offer is an extended fast. Today I ended 12 days of fasting (not for AS, but just general stuff), and I do not recommend that long necessarily for Your first fast (the first TRY You might fail, but eventually You will invest enough time in not eating that You will go on with it): SIX DAYS is adequate, five if suffering too much. But get off the steroids!!!

And in addition to this, I recommend contacting the Road Back Foundation for a local physician willing to use antibiotics to help treat autoimmune disease. Take them a copy of my AP for AS, as a basic guide if You want and also have a look at Dr. Garten's fasting chapter; all in my Important AS Resources link.

But I ask if You are taking enough EVOliveOil throughout the day and EFAs are very important. Get some borage seed oil and take a handful (2g effective GLA) just before retiring. Then fresh wheatgrass juice (4-6oz) on empty stomach (between meals) for three days in a row.

I don't know why the tnf-a blockers are not working! That is a very frustrating thing and I am sorry because these are very good drugs for pain relief.

HOWEVER, I do not need either steroids or the chimeric biologic drugs because antibiotics+NSD have been so effective, but important to choose foods that help heal the gut and also aggressively supplement with good starch-free minerals and vitamins.

You can get through this, but nothing is ever all that simple and AS is a monster that we have to hit with multiple weapons at once. Join the NSD group on FB or ask about Your diet on the NSD Forum; I really want to know how You are doing and please write to me directly if You have problems or questions.

Hang in there and regain Your
HEALTH,
John

Hello Little Katy,

Doctors will discuss/promote what they know, so they will prescribe different types of medications including NSAIDs.

My father used Celebrex for many years with pretty good results. However, my father was entirely fused in back, neck, hips as well... but he also lived a pretty good life teaching until 65 years old and gardening each summer with 150+ rose bushes.

Some believe (not many doctors) that there in a leaky gut theory and that NSAIDs can destroy the intestinal lining that leads to AS progressing quicker because of a leaky gut... I tend to adhere to this theory with reviewing my personal life with how my AS progressed. However, I am also not afraid to take occasional NSAID if I need to combat inflammation.. but prefer not to take them long term any longer if I can avoid it. I had taken them every day for 7-8+ years early on in my AS.

I believe the most important thing in living with AS is learning about AS and the different treatments... you should know more than your doctor. Doctors now have little time to spend with patients. You should work with your doctor as a team and help to make his job easier... come prepared to your visits and work with him on plan to beat AS.

There are many medications available, diet and other alternatives out there.. learning is the key.

Best,

Tim

Little Katy,

I have fusion in my entire thoracic spine and never took NSAIDs or anything else. I regret it.

IMO until someone shows you a peer reviewed study demonstrating solid evidence of NSAIDs making AS worse, you should ignore the amateur scientists theories you read here.

If there actually are studies to support this, I would like to read them.

Cheers

Hi Little Katy,

Taking NSAIDS were great at first when i was diagnosed, they really did help with pain management. But in a short amount of time I got used to them and they werent as effective as well as giving me a small amount of digestion problems. I then began the No starch diet while taking the NSAIDS and then slowly decreased my dosage until I finally came off of them. Some people say that the no starch diet does not work for them but I found that I had to cut out sugary fruits for it to be more effective. It depends on the individual.

My anti inflammatory markers are almost no existent whilst doing the no starch diet where as when i was taking NSAIDS they were elevated.

If everybody knew that by changing your diet it would reverse most of your symptoms the pharmaceutical companies would be broke. Who needs "studies" when you have living proof from so many people on here about their success with the diet alone. Since learning more about AS and the best ways to treat it naturally I have lost so much respect for Doctors.

Try to keep an open mind and good luck,

Mikael