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

To stop AS from progreessing, do u need to be on one of the BIo-drugs such as Humira or can u just be on NSAID?

Hi habib,
I wish there was a hard pat answer to your question. The ways of stopping AS progression are as varied as the members on this site. Some use biologics, other diet, and any combination of meds that you can imagine.

The difficult thing is to find what works for you. Its a trial and error journey, I hope that you find your combination quickly. Keep us posted.

Many people are able to keep their AS under control for many years with NSAIDS. They usually need to take something to protect they stomach.

I started having tendinitis pain when I was 19. The only type of NSAID available then was aspirin. I took it for many years for joint and back pain until Naproxin came on the market. I have been treating this for the last 50 years(I am 70) I have tried most of the Rx NSAIDS as they were developed. It has only been recently that my AS became so terribly painful I needed something else beside NSAIDS and Pred. I started taking Humira in June after living in horrendous pain for the last 8 months. It was that or I was going to move up to the long lasting and stronger opiates and I didn't want to do that as I am raising two granddaughters.
Donna

Hello, habib:

To be quite honest with You, NSAIDs greatly increase progression of AS for me. There is a good reason this happens and studies designed to support NSAID usage have only proved that NSAIDs hasten the progression of AS (despite the hyperbole and histrionics attempting to claim the opposite).

If biologics have even a slight chance of reducing damage I would take that chance, unless I was aware of--and was motivated enough to employ--a better method (which I am and so I do).

Good Luck to You,
John

what my concern is the huge side effects of the Humira..death, cancer? humira may relive AS but u may wind up getting some other issues. Is it really worth it? I know the side effectgs happend only to a small percentage of people, but anyone could be in that small percenatage.

Hey, habib:

Well, the side effects of NSAIDs are geologically SLOW, and although they do not result in death directly, they maim severely enough to warrant total abstinence from them.

Whereas the biologics are statistically much safer and the hopes are that stopping them would also stop the side effects but of course can there be enough early warnings (there are not with NSAIDs).

Good Luck with whatever You decide,
John

In the past when I took the NSAIDs I found I had a lot more gut problems, and although my pain was lowered my general welbeing was not good. At that time I continued to eat starch since I did not know it was a potential cause of my discomfort, and I ate a considerable amount of sugary foods too, the later I beleive leading to my Canidiatis.

Anyway, as the years went by I began to notice that not only were my gut problems getting considerably worse but my pain seem to be getting worse too. The doctors were increasing my NSAID intake and they were having much less effect, only a couple of hours later I was feeling like I needed more

I started taking paracetamol with them and other more natural painkillers, but because these tablets were just masking my symptoms and not helping me to get down to the bottom of my illness, nor repair things in any way, I simply got poorlier and poorlier

The doctors were also frequently changing my antidepressants and then chaging them back again, telling me the many side effects I had from these were Fibromyalgia LOL

Anyway, when things got really bad, when I could not walk or leave the house because I had bowel problems and so on I decided it was time to come off this medication

Lordy, Lordy, I have never known anything like this. It was like giving birth to 20 children. But you know what this crazy pain did not last that long

As you all know I changed my diet, mainly to treat Cnadida at that time, because I did not know I could have an arthritis. I had to remove many offending products including starche and sugar

four days passed and I could not believe the difference. Form a 10 out of 10 sdown to a 7 out of 10 in just a few days. Anyway this was the beginning of my natural healing adventure. And it is an adventure you know, not a punishment, not a depravation, but a liberation

ow do ot get me wrong I am not totally against everything medical. I myself cannot take antibiotics, or if I did they could do me personally a fair bit of harm with the Candidiatis, but I recognise why people do take these, they work, and generally they do not do much harm and where they do do harm, like with what I have they the problems can be sorted with strict diet

Even the NSAIDs, some folk are in such pain they have to take them, and they have to take high doses of them. How can I judge. If it was my child what would I do? Would I say no you must not have them, they harmed me so you cannot take them?

No I would not because I know that in different circumstances people do different things and I am no different to anybody else

All I ever say to my children, and folk that have interset in nautral remedies is do some research and learn about the things that could help you. there are many things and some of them are simply delightful

Take the Paul MCKenna CDs. Paul is such a lovely man and he has really got down to the things that cause folk unnecessary pain, both phyisical and emotional. Instead of making it all seriouls and labeling folk as fruit cakes, Paul invites the joy of life into all his therapies.

I have used many of his CDS, to stop smoking, improve my sleep, eat better, get motivated for excercise and so on. All these, things I was so afraid to do, because doing any made my pain worse. But the way Paul has showed me how to do them has made even the impossible easy

Now I do know disability is a personal thing and not everybody has the resources I have, nor the support, but honestly just a little tweak here and a little tweak there and our bodies alter

Instead of becoming a reaction machine, ready to fight any invader, our immune system starts to feel safe, when it is nurtured lovingly, honestly it begins to feel safe

then instead of beating me up and making my life hell my immune system is now working for me, repairing the damage she herself did to me, only because I was doing things that got in her way and made her job hard

I do hope this is helping at least one person

All my love Joanne

Hey, Joanne:

Well, You are a lot nicer than a DragonSlayer!



If my daughter had AS, I would lock her in a cage before letting her take NSAIDs or even eat! I would tell her we were in a contest, and when I ate food again, she could also!

I mean, I always ask myself...WWVD?: What Would Vlad (as in "The Impaler") Do?

No, AS is nothing to mess with and if I had known what their medicine would do to me, I would have stayed well away from the doctors.

It was worst-case for me, hearing about meat and RA well I became a vegetarian and was taking NSAIDs so it was not very long before AS stomped on me BIG TIME.

HEALTH,
John

John

I hear you loud and clear. I just don't know what the answer is. I have been able to get off all my chemical medications, but when I tell folk this I don't think they believe it was ever as bad as it was.

With all the brain problems in my family, my dad with Parkinsons, my husband with a brain heamorhage and my sister with schitzophrenia, and a few others, I have ended up writing up regimes for each of them

All three of them wanted to cheat LOL

What do you do when you know cheating will deminish the benefit of what you are giving folk?

So I have compromised where I could and told them that I would give them each the best diet for them, plus herbal remedies that heal and so on, and they could if they really felt they had to, carry on smoking and taking their chemical medications and eating some junk, providing they promised me they would learn about the health benefits of each thing i gave them.

My dad went on the internet. he studied the latest reseach on ketosis and Alzheimers and Parkinsons and about how Vitamin D, All the vitamin Bs and coconut oil could help him. He also learned about simple excercises that would help him. And he started using Paul McKenna to help him sleep. He is currently on a very low dose of dopamine, and now no other medication

My husband has it easier because i prepare his meals. He still smokes but he is also realising that natural foods are lessening his cravings and he is supportive of my spiritual music and such, so although i know that his smoking is not good, he is doing most of what he needs to, eventually he may stop. He no longer takes NSAIDs, instead he uses tapping, Paleo style diet and Devils Claw. He is also keen on classical music and easy listening music, which I feel calm his nervous system

My sister is learning to use many of the same things, but with her the priority was to decease that insulin. She has to inject. This was very very hard, but she has managed to do so and since doing so, not only is her schitzophrenia barely noticable, her neuralgia is much improved too. The two food she needs to avoid the most are wheat and milk. She cheats with this, I just try to reward her when she doesn't. She is teaching her self about alternative therapies

And this is what I am finding with folk. They all have gripes at everything that has taken me weeks or even months to learn, but I can't force them, even if I love them. All I can do is encourage them all to learn as much as they can themselves

This is working. My son and daughter are doing really well, bith are highly physically fit. Like atheletes, yet only a few years ago they were like mr and mrs blobby LOL.

They are willing to learn it, I think the young today are keen to learn this stuff, they can see better the big mess our generation has made of it all. Plus they do have more role madels than we had.

Here in england Prince Charles talks about the benefits of organic eating and the benefits of different alternative therapies, and even the film stars on MTV often give better nutritional advice than mant of the so called experts ever gave me. the other thing film stars are good at is making it more fun. they have dance excercise DVDs nowadays and there seems to be a wider understanding of the value of vitamins, minerals, and even enzymes, my children tell me LOL

So as you can see, i this respect it is working for me, because I am even learning off them too

As for the NSAIDs, I am lucky none of us need them right now. the last person to take them here was my hubby, from day one, I was helpig him off them. Although his pain is still as bad as it ever was, for over a year now he has managed without them, so its good.

It is learning to have patience with these lot that is now allowing me to have some patience with them that really drive me batty, the ignorant doctors LOL

You never know by the end of this I may actually have a positive effect on them too, God willing.

My appreciation, as always John

Love Joanne

Joanne, I am glad that you are able to control your illness with diet. That does not mean it will work for everyone else. You have been presenting your diet as if it is some wonderful cure. Many people here, including me, has tried the NSD and it didn't work for them. You have been repeating your story over and over and it's getting to the point where it has caused some unhappiness on the part of many other posters. It seems as if you want the people who couldn't stay on that diet to feel guilty.

We have very sick people coming here. You shouldn't be telling them that you have a cure. That is how you are coming across.

It would be nice if you could keep this discussion over on the diet forum where it belongs.

I know that some people are going to be unhappy with what I said, but I am just sick and tired of having this diet shoved down my throat. I try to be supportive of others, but it works both ways.
Donna