Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Treading symptoms vr disease?

Hello Everybody,

I have been diagnosed with AS late last year. It first started off with a stiff back in the morning which quickly got better as I started my day. After multiple trips to physio and my doctor I was tested for the genetic marker and it came back positive.

So far I have been prescribed different NSAIDs which don't really seem to have much effect. Maybe I am being unrealistic thinking one will be a miracle cure and I will wake up pain free? Oh what I would not give for a full night sleep.

I have had an MRI and it shows some damage at my L5:l1 joint and my doctor says there is enough evidence to go on a biological. I'm not sure if I am ready to do that just yet but as the days pass I feel more and more inclined to try it.

What I am trying to figure out is do the NSAID's just treat the symptoms or do they treat the disease? What causes the bone growth? Is it the bone growth that causes the inflammation or the other way around? My fear is does the NSAID's potentially stop the inflammation but do nothing to stop the changes in my joints? If that is the cause I would jump right on the biologicals. Last week I started to get chest pain to go along with my hip and lower back pain and it is kind of a wake up call to take action.

My symptoms are not as bad as one may seem. Nothing has changed in my life. I still go to the gym, play volleyball, scuba dive, mountain bike etc. I just don't want things to get worse.

Hi Shane,

How old are you?

I was diagnosed in November 2014.

Things will get worse and neither NSAID nor biologics can't stop bone growth and damage as inflamation is initiated in multiple pathways.

I know it's impossible to accept, and most people stay in denial and still believe they will somehow get cured.

Still I strongly recommend biologics to delay damage and continue and enjoy life.

Don't be scared and come back here and talk to us people here have helped me a lot with advice.

Most people do well on biologics so give it a go!

BTW bone growth is caused by constant inflamation, I have one bone spur in my spine... for now.

WELCOME, ShaneMac:



This is a key question and the answer is that NSAIDs relieve pain and do not actually treat the underlying disease that causes AS. They do very little positive for disease progression, and in my own (extreme) case, NSAIDs caused considerable acceleration of my AS.

The inflammation does lead to fusion, with an intermediate process called "fibrosis," where the reaction by products accumulate before concreting into calcification. The bone spurs and syndesmophytes are not real bone, but much weaker, with no structural matrix.

Chest pain in AS is usually costochondritis, with very sensitive sternum, typically. Every place there is inflammation is a wake-up call; our bodies trying to tell us something is awry. Please check out the NSD and Diet Forum for ideas to better manage our AS.

Glad to have You part of the group, I wish You much renewed
HEALTH,
John

I am not nearly as knowledgeable as others here but from my understanding yes and no is the answer to your questions.

NSAID's do only treat the symptoms which is the inflammation, but by treating the inflammation they help to slow down the damage that the disease causes like bone growth and fusion of joints.

There is no cure in that you will get where the disease is gone, but my understanding is that biologics actually can halt the disease process in some people. I have not tried these yet.

This comes from my very simple understanding of what my doctor explained to me. Other know more.

Hi, I'd suggest doing an internet search on nsaids + radiographic change + spondylitis to read published research on the topic. You will find actual research vs public opinion vs pharmaceutical conspiracy theories. Always best to check all sides before making a decision. Certainly NSAIDs have side effects to consider. Many KA members are firmly against them, have had negative experiences, have found other alternatives yet some members have been taken them for decades. There really isn't a right answer but to do your own research. Best wishes.

From what I've learned, essentially they don't treat the disease itself. As mentioned they can slow deterioration of the joints which slows the progression, but doesn't stop the cause of the inflammation itself.

I also recommend biologics because they (supposedly) supress the immune system which is attacking your joints and causing the inflammation. They have their side effects like all meds, but i will say I tried 5 nsaids I believe, and none of them really decreased the swelling in my knees like Humira.

Thank you everyone for the replies. I'm 37 years old.

So far I have tried Ibuprofen, Naproxen, Celebrex, Meloxicam and Idomethacin. The most effective seems to be Ibuprofen so far. I am currently taking Idomethacin 3x a day but not 100% how effective any of them are due to the on and off status of my inflammation. Lucky my stomach seems to tolerate them with out any issues.

I started a low starch diet yesterday. I'm willing to get anything a try. I probably should try the no starch diet first but.. that looks so much harder to do.

Wednesday I have a follow up appointment with my rheumatologist. I'm going to ask her about trying Rifaximin to go with my low starch diet. Not sure if she will go for it but it is worth talking to her about it.

I read some posts about LDN (Low dose Naltrexone). I have not found much information on it yet. What category does it fall under?

Is Sulfazine and Methadextrate worth trying as a DMR or do you suggest skipping them and going right for the biologicals?

Thanks again, it is great to have people to talk to that are going thru the same things.

Hi, ShaneMac:



Sulfasalazine (enteric-coated as Azulfidine--EN or Salazopyrin--EC) is a very good drug especially in combination with diet.

If I were going to take a biologic, it would be in conjunction with methotrexate and diet, with the goal of allowing the drug to maintain efficacy over the longest term possible.

The basic lifestyle change of diet is still important for optimum control of this chronic disease; it is very important to treat the cause of AS, not just symptoms.

HEALTH,
John

I have been doing some research on Klebsiella and ways to potentially dealing with it. LSD and NSD help keep numbers down by removing its food supply which I believe is starch?

I have a feeling my doctor will not be willing to prescribe a antibiotic (rifaximin, moxifloxacin, ciprofloxacin) I started to look for some other alternatives to dealing with the bacteria.

I have since found these links:

ANKYLOSING SPONDYLITIS IS CAUSED BY KLEBSIELLA
https://www.kickas.org/medical/11.shtml

[Protective effect of Lactobacillus acidophilus on development of infection, caused by Klebsiella pneumoniae].
http://www.ncbi.nlm.nih.gov/pubmed/8243718

Here in Canada Lactobacillus acidophilus is easily found in Bio-K+ L. (acidophilus CL1285®) as well as other probiotic digestive aids: Jamieson Probiotic and Webber Naturals Complete Probiotic with Lactobacillus acidophilus (HA-122)

Does anybody know the difference between CL1285 and HA-122? Will they both do the same thing?

In the mean time I'm collecting information to give my GP and rheumatologist next week.

I'm scared of trying so many things at once and never knowing what in particular works or if its a combination etc.