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

Hello, I am another newbie to KickAS. I have been reading some of the posts and decided it was time for me to share a little bit about myself. I am currently 20 years old and a college student. About a year and a half ago, I started having back problems that prevented me from sitting, standing, or laying for more than a couple minutes at a time. It took about 8 months before I was diagnosed with AS. I have been going to physical therapy and have been taking Azulfidine and Naproxen. At my last appointment with my rheumatologist, he gave me some information on different possibilities for treatments: Injections: Enbrel, Humira, Remicade Tablets: Leflunomide, Methotrexate. I have been watching the informational videos and reading the pamphlets on the different medications, but I wanted some input for others who were taking the medication before I started treatment. I’m not a big fan of needles and some of the side effects worry me, but I want to do whatever I can to slow down the process of AS. I appreciate any input.

Hello! and welcome.
My suggestion is to try LSD or NSD diet or stay with the lowest risk medications as possible. I have had no major side affects from Humira but Methotrexate and some other types of drugs can be not very kind. In my case I was going blind and the doctors could not stop the prograssion of the desease so my treatment options moved quickly over a year period. For your insurance to pay for the higher cost medications he has to show that the other treatments do not work.
Good luck and hope you find a treatment that works for you.

Tim

Welcome to the boards. I can't help you out with the medications myself (I'm on indomethacin, which is an NSAID), but I think the best thing you can do right now is to educate yourself about the disease and different kinds of treatments available. Your best bet is to use the "search" function. I've been able to find a wealth of information and I'm sure you will, too.

Best of luck.

Hi there!

Welcome to the community! I finished my engineering 1 year back, got diagnosed with AS 6 months back. I am 22 right now and have the same concerns as you do. You will find this board very helpful. I cant offer much advice but this is what I have learned so far:

1. No matter what happens, do not panic or scare yourself! Everything is gonna be alright. Look around, everyone has some problem. No one is perfect. Believe in God and everything will turn out to be cool.

2. BE ACTIVE. If you don't play a game on a daily basis then start playing one. Tennis is a good start. Avoid contact sports like basketball. You're 20 and need to be in shape anyway! Remember two things gonna help you relax and be active:
1. Natation
2. Regular excercize.
Oh btw natation means swimming (I am a vocab freak , because of this exam, lets see if you can name which one!)

3. Yoga, Special Excersizes..... whatever works for you, just be active.

Oh one more thing. If you're from the computer stream (like me) don't sit in front of the computer for more than 30 mins at a stretch.

Tell me in which stream you're doing engineering and I'll give you specific advice. Peace out!

Hi,

Welcome to our KickAS family! I have to tell you that this place has been a God-send for me...I had so many questions when I was first diagnosed and everyone here is so wonderful in answering them and giving their advice.

Are the Azulfidine and Naproxen working for you at all? I had tried Enbrel at the end of 2006 for 3.5 months and did not find much improvement with it so my rheumy has put me on Remicade and I am receiving my 5th infusion on Wednesday. Unfortunately, I am not responding to this treatment either, but that's just me. However, I know that both of those biologics have helped many people here, so if what you are taking is not helping, read up on them and consider trying them out. I was very concerned about the long-term side effects as well (because, well, they're kinda scary!), but you know what? I have come to the conclusion that I have to live in the "now." For me, I got used to needles (I was doing acupunture as well)...and if the meds that come in needles works for you, then it is worth taking them and being in less or little pain. The biologics will not reverse any damage that AS has caused, but they will slow down the fusing process and can prevent further damage.

I am glad that you are here. Ask us questions anytime!

All the best,

Trina

Welcome to kickas
You will find a wealth of information and support here. Also there are quite a few young adults here that you will be able to identify with and get to know. Hope you hang around
Cindy

Hiya EngineeringGirl and welcome!

What type of engineering you into? I'm a Civil Engineer myself - in transportation and roading design.

Chelsea

Thanks for the info! I'm going to look into the diets.

When one has a health problem, it is like troubleshooting.

The LSD/NDS is certainly something to look into. Many people have benefited suppossedly. The posts that claim so have the ring of truth.

For me, it was different, I was on a strange high protein/high fat diet before my onset, I did not eat a lot of starch - but I had some sugar now and then, and also alcohol. I also drank about 1/2 gallon a day of strong coffee daily, and was sedentary in front of a computer 10 hours a day. I never had whole grains, or fresh fruits and vegetables hardly ever. Instead, lot of meat - and lots of cheese.

I took magnesium citrate, a cheap supplement, and reduced my pain, stiffness, and fatigue immediately.

Magnesium for pain, stiffness, and fatigue....

I have changed my diet to mainly a plant based diet, without a lot of dairy. But darn it - I can't seem to totally quit the coffee. Coffee in large quantities is not good.