Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club 26yo just diagnosed

I was just diagnosed yesterday. Admittedly, I'm still kind of in shock. I had been having back/neck pain for the last 3/4 months and decided to see a rheumatologist. So just yesterday he went over all my blood tests and gave me the news.

I guess my biggest questions are are we all destined to have fused spines and is it possible to have a long term career? I work on the computer so my job isn't that physically demanding, but I'm also kind of worried about my eyes because I need them for work.

no - we are not all destined to have a fused spine, even without treatment some people will never fuse, not everyone has eye problems either, AS is a very variable disease,
yes - you can have a career
as you spend a lot of time sitting at the computer, make sure you are getting exercise and stretching, especially stretching, to keep yourself as flexible as possible

Well that's very comforting to hear. I think I am having some eye problems though. My eyes have been hurting for about 3 weeks now. I went to an ophthalmologist who basically just told me the eye pressure was a bit elevated in both eyes and prescribed me a 6 day course of prednisilone. My eyes still hurt though. I'm due to go back to the doctor next week however, and I plan on telling him about my new diagnosis.

I wonder if anyone else has had this kind of eye pain/pressure? What have you found that helps? Its really getting sort of bothersome and worrying.

Welcome Mike! Very sorry you have this disease, but glad you've found your way here. This forum has hands-down been my best support system for dealing with my illness. Pop into the main forum too as it's much more active than our subforum for youngin's.

As winelover said, it's definitely not guaranteed that you will fuse. It's great that you were diagnosed so quickly (the average is closer to something like 10 years for an AS diagnosis). That is very likely to help with staving off damage, and improving your quality of life, since now you have access to treatment. They've found that some treatments (specifically anti-TNFs like Humira, Enbrel, Remicade, etc) work best when used relatively soon after disease onset. They haven't specifically found that any treatments stop or slow fusion if it will happen, but that's difficult to measure. In any case, I can testify that I feel much better when my inflammation is under control, which counts for a lot, whether or not it will prevent fusion.

Hey Mary! (I'm guessing thats your name) Nice to meet you!

Ya it definitely sucked getting the news I had this disease. But I am glad to finally have an answer to why I'm in pain. Though it wasn't easy. Took a lot of pushing and a lot of doctors. These past few months have pretty much been a nightmare. One doctor actually had the nerve to tell me it was stress causing my pain.... Anyway I'm really hopeful I can control the course of the disease and I want to try hard to learn as much as I can.

So far my doctor has only prescribed me indomethacin and omeprazole. I don't really like taking drugs, but I have a feeling its going to become sort of a way of life now... I am kind of scared about going on those anti-TNF drugs because I've read about all the side effects. I'm hoping between exercise and diet (though I don't really know what a good diet for this disease is yet) I'll be able to manage most of my symptoms.

The best place for you and your eyes would be the Jules Stein.

http://www.jsei.org/

They have the expertise to help. Me? I have had eye problems for years and have found getting to the best is key. Many times it is about finding the right person not the right medication. I cannot encourage you strongly enough, now at the beginning to ask the best.

Thank goodness you are in L.A.

The potential side effects for the anti-TNFs are definitely scary. That being said, the scary ones are all very rare, and many are reversible. Some of the black box warnings have since been found to not be particularly accurate in further studies. For instance, there isn't really any increased risk of cancer except for lymphoma in children. The risk of infection is for many people not really that high; it's only suppressing a portion of your immune system, which was likely overactive in the first place. I haven't had any infections and have been on anti-TNFs for over a year now. Some people (seemingly those already very prone to infections before treatment) do experience a higher propensity to infection, but it isn't across the board. It is still important to stay off of the medication when you have an infection, or when you have a planned surgery, as it does make it harder to fight off an infection.

Not everyone goes the medication route, trying alternative treatments via diet instead (works for some, not for all, much like any medications), but medication has been life changing for me. I never liked taking medicine either. I was always really, really bad about staying on meds for things like acne, or even my GI condition. This disease has changed that though. If I get lazy about getting a refill and go a few days without one of my meds, I pay for it. I don't want to go back to the way I felt pre-treatment, that's for sure.