Ankylosing Spondylitis

[redfox]

My 18 year old stepson was just diagnosed with this rheumatoid auto-immune disorder. I am very sad about it. We've done our web research, and he's seeing a specialist on Wednesday - THANK GOODNESS we bought him health insurance 3 months ago!!!!!

I am looking to hear from people who live with this disorder, and especially anyone who knows of teens with it. We're pretty stunned by it, and in info gathering.

Thanks so much for anything you can offer.

[Merski]

My Father in law had it and it was in the family. If you send us a message with your email, my husband would be happy to tell you what it was like living with someone with this condition.

[redfox]

My Father in law had it and it was in the family. If you send us a message with your email, my husband would be happy to tell you what it was like living with someone with this condition.

Thank you! Will PM you.

[treehugger]

I've never heard of it, but just wanted to post my sympathy and best wishes for learning to live as well as possible with this disease. I hope the specialist can offer some good information and support. Knowledge is power.

Kara

[SoSimple]

I'm so sorry to hear that. Being diagnosed with an auto-immune disorder at any age is quite devastating, and especially for someone so young.

My uncle had it (he died from a completely unrelated climbing accident - the fact that he was climbing tells you that not everyone is badly affected!). I have a related condition (psoriatic arthritis), and like 20% of people with psoriatic arthritis, I have spinal involvement also. Lousy genes on my part - HLA-B27 is the responsible gene in my case; it doesn't directly cause it, but it does mean that I was predisposed to develop it, and develop a more serious case of it when I did.

There is good news, and bad news.

Bad news: Your stepson is probably uninsurable on the individual health insurance market in almost all states. He will need to consider his future career carefully to ensure that employers in his field carry large group health insurance. Many employers carrying small group insurance won't be able to afford the premium increases that will likely be foisted upon them by their insurance companies. For the moment, watch that he isn't dropped by your insurance or that his diagnosis causes large premium increases (this depends on your health insurance situation and the state you live in).

Good news: There are some really good medication options out there now. AS responds to many of the same drugs as psoriatic arthritis and rheumatoid arthritis. He will probably be started off on NSAIDs (ibuprofen and stronger; perhaps Celebrex). This may be enough on its own to relieve symptoms. If not, he may also be put on one of the disease-modifying drugs such as Methotrexate or Sulfasalazine. These are quite potent drugs and don't necessarily slow the progression of the disease (recent research showed that they relieve symptoms but don't slow the disease for psoriatic arthritis, for example). NSAIDs, such as Celebrex, are a little pricey but still affordable. Methotrexate is relatively cheap. Many people manage on these drugs alone.

However, if those drugs aren't enough, the really effective medications are the "biologics" such as Enbrel, Humira and Remicade. These newer drugs are astonishingly expensive - around $1800 a month without insurance - but also astonishingly effective. Three days after I started on mine, I went from extreme fatigue, significant pain, walking with a cane, to being able to walk up to 4 miles at a time (more usually 3), a lot less fatigue, and only moderate aches - more like a normal person would get after some heavy physical exertion, like moving heavy items. I was able to go back to work and instead of contemplating a life full of serious pain and being somewhat disabled, I was able to resume a relatively normal life.

There are issues to be aware of, however. Health insurance is at the top of my benefits list for any job I consider. I'm lucky to be in a field where my skills are in demand, so I'm unlikely to struggle for work, but some of the more interesting and exciting opportunities at start-ups I've had to pass by because of health insurance issues. I also have to think ahead to retirement rather more seriously than most (although probably no more seriously than folks here do). I will need more money than the "average" person because I have this condition for life, and the medication is not going to be cheap for a long while to come. So higher expenses just to have a "normal" life. I budget an extra $2500/month for my emergency fund and my retirement income needs just in case I find myself having to pay the full cost of my medication and associated tests, doctor's visits, etc.

Be sure that he pays attention to stress and diet. Stress does increase my pain levels (which means more damage is being done to my joints). I'm also more susceptible to whatever bugs are going around - I had 7 major colds last cold/flu season, and caught almost everything that went around the office. Diet: I strongly recommend either Dr. Weil's anti-inflammatory diet or Dr. Furhman's "nutrarian" diet. Both are good ideas anyway just for general health. I've been following an almost entirely vegan diet for several months now, although I'm seriously considering adding salmon/other oily fish back to my diet for the omega 3's. Supplements: vitamin D, fish oil (or krill oil), ginger, turmeric; consider feverfew and milk thistle also (the latter is supposed to protect the liver - a very good idea if he ends up on methotrexate).

I don't personally know any teens with AS, but I do belong to a Yahoo group for psoriatic arthritis, and there are a number of parents of kids and teens on there, and some young adults that were diagnosed early on. There may be a group for AS also.

Egads, I wrote a book!!!
The main point is that yes, it's always something he'll have to live with, but it's not as dire a diagnosis as it used to be. I'm sure there are support groups for teens with AS and other spondyloarthropies.

Best of luck to you and your stepson. It is dreadfully shocking to get a diagnosis like that, and it is a life-changing event, but the good news is that it is generally manageable for almost everyone. He'll still be able to do just about everything a "normal" kid can do.

[redfox]

SoSimple - THANK YOU! Such great information. We're currently paying out-of-pocket for private insurance with the cooperative he's been covered by for years. I am happy to keep this up. I'm going send this on to my husband. We have a dear friend who is an acupuncturist with his own clinic, and he has been super supportive as well. My SIL is a well-schooled herbalist and organic vegan chef - she gave him the "drop all the bad stuff" lecture. It's interesting that 6 months after he moved out - and away from all our fabulous home cooked organic & healthy food, he flared. He's pretty sensible and a darn good cook. I think he'll get it figured out. He sees a rheumatoid specialist tomorrow, and his father is in touch with him... I'll likely know more tomorrow night.

I so appreciate all the info, and wish you well in your management.

[Mrs-M]

I don't have any helpful information for you Redfox, however I want to let you know that you and your son are in my thoughts and prayers.

[redfox]

I don't have any helpful information for you Redfox, however I want to let you know that you and your son are in my thoughts and prayers.

Thanks, Mrs. M. He saw a specialist today, but doesn't want to talk with us about it - he really wants to be independent. We're managing our anxiety about it al, and will be available to him when he needs us... and continue to pay for the insurance, of course!

[Mrs-M]

I can only imagine the fear and concerns your son has at this time, but maybe, after he has a chance to digest and come to terms with the news, maybe then he will have the strength and determination to approach you and your husband with a less independent stance. One thing that's really encouraging to me is his strength. Just his will to want to deal with things head-on and as a power of one is incredible. That IMO is exactly what people need when dealing with life-altering illnesses. A very admirable trait.