Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Few questions on biologics + my future education

Thanks for all of the answers in my other post, they have been of great help.

From what I understand, biologics do not slow the progression of the disease? So if you are on biologics, you are effectively doing nothing to treat the condition besides tackling the pain (in theory). Is this correct?

So if you were on a biologic, what else (if anything) could you do to slow the progression?

I only just passed my final year at high school. I put a lot of it down to this hindering my abilities and I have just figured out that I have not met the university entrance criteria. There is no way that I will be accepted under normal circumstances to my understanding. Do they potentially make exceptions for people with conditions like this?

Thanks a lot,
Seb

This is how my situation was explained to me.

Im taking the TNF's in hopes of stopping fusion. The reason my Dr's say this happens is that biologics are a targeted process to lower my immune system so inturn my immune system cant do so much damage when attacking me. Through this targeted biologic process it lowers the inflamtion and that inturn slows progression and the formation of bone growth on my spine. Our (we people with AS) bodies makes a ton of interluken this is the enemy to us, this is because our immune system is confused.

The LSD might also stop this problem by limiting the scope of what the confused immune systems is seing as the enemy. Hope I got that right im not trying to misinform only trying to help.

As far as school goes. In Canada you could and you could also get an extended time to do labs and the like, although lectures would not be optional. Hope your country has the same system Canada has. The mind s a terrible thing to waste

Second and third sentences are correct.

How ever some people have incidental inflammation to some degree accompanying AS, and the biologic can help with that, however the inflammation is not thought to be the culprit in actual progression of AS.

Some people are dreaming about Nsaids slowing it down (me too at this point) not thought off as very realistic by most medical people.

No, I don't think it is fair to say that by taking anti-TNFs you are doing nothing to treat the condition. Nothing - not medication, alternative medicine or diet (LSD, NSD, or any other) - has been clinically proven to halt fusion in Ankylosing Spondylitis. The anti-TNFs address the signs and symptoms of inflammatory disorders including AS. By that, I mean that they reduce inflammation, stiffness, enthesitis and fatigue. In the past, it was believed that fusion was caused by inflammation. Current research indicates that inflammation and fusion are or may be independent of each other. Just as fusion causes obvious damage, uncontrolled inflammation causes significant damage to the human body.

Even if the anti-TNFs do not halt the fusion process, in my experience, they do make life infinitely more livable. While they are not painkillers, pain is reduced or eliminated when the inflammation/stiffness/enthesitis are reduced. By eliminating pain, stiffness, etc., you improve the odds that IF you fuse, you will fuse in a more upright manner. In the many years I have been on anti-TNFs, I have had a small amount of progression of fusion. However, the rate of fusion for me has been slower then what I was experiencing prior to biologic therapy. Is that because of the anti-TNFs? I can't say that as I have no way of knowing what would have happened if I was not on the medication. Keep in mind, not everyone with AS fuses and MOST do not experience complete fusion and/or disability.

I have two teenagers about your age who take Anti-TNF drugs for Juvenile Spondyloarthropathy. Both were miserable before treatment. With appropriate medical management (TNFs, NSAIDS, exercise and a good well rounded diet) both are doing well. You would never be able to pick them out in a crowd.

I am not sure what to suggest regarding school. In the US, a high school student's Guidance Counselor would have/should have guided you through school and course selection to ensure that you met the requirements for higher education (if they knew that was your plan). Students with disabilities can request reasonable accommodations as needed due to their disability. For instance, my kids' high school plans allowed them more time to make up missed work, longer time periods for written exams, a second set of books, etc. My daughter was required to meet the same high school graduation requirements/ college entrance requirements as other students. She just would have been given more time to meet those requirements.

In the US, students can pick up missing coursework requirements through online programs, some alternative schools, and at junior colleges.Once they fulfill the University entrance requirements, they can apply to Universities. Is there something similar in New Zealand"

Majest what is the culprit then? What causes the progression of AS?

When I die and the do an autopsy on me (I have donated my body to them to help them have a closer look)they said my spine itself would be full of inflamatory cells. Its a targeted process of confusion. That inturn is why somepeople dont have raised CRP & CSR. The problem is in the spine structues itself.
They could "sample" it right now and have a peek, but it is very invasive and could make things worse.

My Dr and researchers said to me that bone turnover due to the inflamation is what causes new bone growth. It takes bone away then heals me in the wrong way and forms new bad quality bone.

When they showed me my spine of film it was warn away and shiney at the edges (That is the parts that have not already fused) for the other parts it really does looks like bamboo.

If TNF's were only to rid me of pain I wouldnt take them. Im not thrilled at a increased chance of getting MS.

Seb, re the schooling - I'm answering this because I have had experience of the NZ university system as a disabled student.

You really need to talk to someone in the education system about this, and the sooner you get onto it the better. Start with your school - if your school and exam performance was impaired because of disability then you should be able to get your results reviewed, or at the very least have the impairment recorded. You would need some kind of medical certificate of doctors letter for this. If there was any kind of guidance counsellor at your school, then they are the one to talk to - and as soon as possible if you want to get into university this coming year.

Then talk to disabled student services/student counselling at the college or university you'd like to go to and find out if there is any other way you can get into the course you want to do - you may find that you can take an extra year and do a prelim type course at that university that would catch you up so you could enter the course you originally planned the following year.

Whatever you do, you do need to make sure that your student records from now on indicate that you have a disability - that will make sure that you either get special assistance or conditions (eg getting longer time to do exams, and doing them in a room where you can get up and move around) when you are studying, and also that if you have to take time out from study you can get back in again without penalty. Easiest way to get seen as a disabled student is to work through student counselling or disabled student support services.

I had to do all this in NZ many years ago. I had something like four goes at university before I finally completed my degree, but because disabled students services and student counselling knew me well they always managed to get me back into the course again every time I had had to have a break from study, AND I managed to keep my right to student allowances as well!

You could do a gap year, but that isn't going to help you get into university without univ. entrance qualifications in the near future. You'd normally have to be over 25 (mature student rules) to get in without the right exam results.