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

so, all the poor suffering folks in here, for all their various reasons, who choose not to consider TNFs are.....

a) not in enough pain/disease not that bad

b) don't have AS in the first place, or

c) really enjoy the suffering

congratulations Bub you are now on ignore

I am really gonna miss those nuggets of wisdom and your insight/experience of AS.

27 yo and already he knows it all

nice to meet you too.Goodbye

Hey, that's how I feel about after trying diet and going through what I've been through.

Anyway, this is a support group, or so I thought. I was at least hoping people would have the decency to be nice to each other here. Anyway I'm glad I won't have to talk to you anymore and thanks for ignoring me, you've saved me the trouble.

For someone who I assume is much older than I am, you've really shown your maturity.

Hi Wilhelm,

To answer you on the extent of my fusion, my reports say:
There is bilateral osteoarthritis of the hips characterized by joint space narrowing, marginal osteophytes, subchondral cysts and sclerosis. Findings are mild-to-moderate on the right and moderate-to-severe on the left. This finding has not significantly changed.

There is bilateral fusion of the sacroiliac joints. Degenerative changes of the lower lumbar spine. Enthesophtyes are seen at the left ischial tuberosity and left anterior-superior ileac spine.

There are small syndesmophytes throughout the thoracic spine. There is diffuse osteopenia, vertebral height and disc spaces are preserved.

Ankylosis involving the posterior elements of C2--C4 vertebral bodies and narrowing of the facet joints throughout the cervical spine, with normal alignment.

I've had AS for 33 yrs. The above occurred in the first 24 years of AS, between the ages of 18 and 42. I'd guess it was steady progress, I was in a constant state of flare and didn't experience spells of remission. Mine was typical, starting at the bottom and working it's way up. The first neck pains appeared at 24 y/o or so. Iritis started at 31 y/o and later became chronic.

When I began Remicade at 42 my range of motion improved considerably over the course of the next 6 months to 1 yr, and I've managed to maintain my level of flexibility for the last 9 years on the med. If Remicade has not stopped the fusion process, then it has certainly slowed it down considerably, otherwise I would have continued to lose ROM. My results could not be better, but as they say, your mileage may vary.

Thank you for your question Wilhelm. I wish you the best!
mig

Dear nenadu73,

I see that we have considerably different points of view. I am always glad to see people reading up and believe that educating ourselves on both the risks and benefits, in the context of our own health (or lack thereof), and in conjunction with our specialists, is the best way to arrive at an informed decision.

I have made mine and could not be happier. True, there are some possible risks. In my case, not using a highly effective way to control my previously seriously out of control inflammation posed the far bigger and very real danger.

I wish you luck in whichever treatment options you choose.
mig

I agree with you about diet but If you are objective you have to admit that neither biologics help everyone. There are so many people who switched almost all biologics just on this forum and that is the fact.

OK, let's say I like to suffer although it is really ugly way to comunicate with anyone. As I see from this sentence you are giving yoursel role of ultimate judge.
How many? Tell me exact numbers. And where from did you get data about side effects and how serious they are?
Slightly? There are people on this forum also who can't recover their immune system and wbc and have to stop with biologics. People stucked in pain and with destroyed immune system. And then what?Cancer and heart disease are the greatest "killers" of all people not just people with AS.

Hey Nenadu,

No biologics do not help everyone, but they do help alot of people, and in my experience with higher success rates than diet. There's no silver bullet for this disease. There's nothing out there that's going to help everyone for sure.



I'm saying this becuase of my personal experience with diet and alternative treatment. I realized after subjecting myself to nonstop pain for almost a year that I was just stalling and that I had to make a decision. Did I want to live in fear of side effects which I probably wouldn't get. Or did I want to take a chance and do something (start remicade) that could really improve my life.



I'm sorry, I don't know every patient in the world with AS, so I don't think anyone will ever be able to give you an exact number. I said this because of studies I've read, people I've met with the disease, and what doctors have told me. I think that's probably the best I can do.



Point me to those people. I don't know them and I've never met anyone like that. Anyway if those people do exist, I guarantee that they're in the very very small minority. I know of a couple people who have developed MS, but I have never met one of those patients outside of the internet and I've met quite a few people who are on biologics. And yes, cancer and heart disease are the leading killers of all people not just with AS. However the incidence of cancer and heart disease in people with AS is considerably higher. And the biggest risk factor they have found associated with mortality in AS patients is uncontrolled inflammation. Here is just one study: http://www.ncbi.nlm.nih.gov/pubmed/21784726

I understand the side effects as well as most people out there from conventional medication used for AS. I do not want to be taking NSAID's because I know that they destroy your gut. I do not want to be taking biologics because I know how severe the side effects can be. I do not want to be taking them because I feel like we do not know enough about the long term impact that they may cause. I don't think anyone WANTS to be taking these serious drugs.

Here is the thing though...

When you are living in chronic pain every single day of your life, when you can't sit anywhere for longer than 30 minutes, when you struggle to walk up a hill that you use to run up without any trouble, when you can't play high impact sports anymore due to the pain, when you spend more time sleeping or in bed than actually living life, when you have had thoughts about ending it all as a 20 year old, it is a very easy decision to make.

I understand where you are coming from but I think you have to respect people's decision to use biologics and try to understand the situation that they must have been in to have accepted these drugs.

I fully respect your decision to question these drugs. While I don't have statistical proof infront of me, I can tell you that if you searched around a little bit you would find multiple studies showing that it is a small percentage that actually develops significant side effects.

I think we should probably draw a line under this now and respect each others opinions. I don't know if this is going to go anywhere..

Dear Mig,
First of all the point is not what I will choose or what you will choose, it is all about AS and it is very bad to recommend anyone something which is not fully proved and checked.

No,there are risks. There are confirmed risks, which people would know. I have commented about study you mentioned and expected firm arguments from you.
There is no need to continue this when you insist on your oppinions without strong argumentation.
Besides that topic was fusing not biologics.

Dear An0thermike,
I do understand your need to present here yourself as someone who made the best decision, in the same time you are encouraging yourself about your decision and that is fine for me until you give right yourself to disinform other with "your personal experience".

What is your experience? It is not enough to meet several people in therapy room. So stop joking with people here this is serious desease which people struggling for decades. What is your experience about diet? How long you were on diet?



Such statement only shows your potentials for discussing this topic. It is the same If you would say my grandfather was smoking and drinking whole life and he died at the age of 105...but unfortunately it is just single grandfather.


It would be very rude to point seek people but search troughout forum you will find them but keep in mind that they are seek and please be polite and do not offend them as you did with people on this topic.


This is the best! If you don't know someone he doesn't exist. You are so funny! :-)


This study forgot SMALL fact that NSAIDs are also causing serious heart problems so I really don't know how to recognize how many patients used it and for how long.
Anyway topic is fusing so please stick to it instead of these fairy tales.

Dear Seb,
this is not story about wanting and I know it very well as I am copeing with AS for 18 years. Same story was in the begining with NSAIDs and today they are confirmed as very dangerous but still being prescribed.
I am not judging anyone's oppinion but people need to know what to expect. And this is not affraiding anyone as you may find people with MS, destroyed immune system and so on on this forum.

I don't understand what did you want to say so please explain me.

Exactly this is the point! It is too early to make serious and objective study which will prove or disaprove safety of these drugs.And that's the reason why they prescribed it so much, to make proper experimental study and see efficiency of biologics...I am against experiments on people as MD.