Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Brand New to AS and Forum

Hi all AS kickers,
I am newly diagnosed with AS (psioriatic AS)that was diagnosed after my 13 year old son was diagnosed with the same thing, after being misdiagnosed for years. I know, same old story, right? Anyways, his rheumy suggested the pain in my back was AS too and sent me to my own rheumy who tested, diagnosed and immediately started me on Humira. I'm doing a lot better, but the problem is my son. He is an extremely active 13 year old boy, plays class 1 soccer, for all you soccer (futbol) lovers out there, and is constantly traveling etc... and taxing his body with the sport. He is also very involved with martial arts. His rheumy put him on Prednisone to start which he felt awesome on, then methotrexate once a week,and ibuprofen 2X daily plus folic acid daily. At first this seemed to help reduce the swollen joints some and he was feeling better and running without as much pain. The dosage of the meth. gets ramped up every 3 weeks and now the methotrexate makes him extremely sick to his stomach, lethargic, headaches, you name it and the ibuprofen the same and he is feeling horrible again. Soccer isn't fun anymore and this is from a kid who lives and breathes it daily. I feel so bad for him, my heart breaks. Rheumy has put him on prednisone a couple of times since his diagnosis in September 07, but really, as you know he can't keep that up. Okay, so I know sports are not the end of the world, but does anyone have any insight as to how to help him? We go back to the rheumy today and hopefully he will switch meds on him. He said he had to fail on meth. to get authorization to go to something else. He also told us that starting so young on the meds makes him want to prescibe more conservatively because the meds seem to work for awhile, then you switch to something else and so on. His theory is if he were to be put on biologics now, for instance, what will work for him when he's 30? I should probably mention that his symtoms are mainly: hips (very bad), neck (limited mobility), shoulders(basically spinal involement in general), feet, toes, some finger and wrist involvement. He first presented with eye red patches too, but that has subsided with care. I know this is very long, but I also know that reaching out to others who have been there can be an enormous help. I'm sorry if these questions have been asked a million times before. As I said, I'm new to the forum and a little green as to how to search for info from previous posts.

Thanks!!!

Welcome! I am so glad you found us and so sorry you had the need to. I hate all of the trouble your son is having. Do what you want to me but leave my kids alone!

My problems started when I was 14 and of course in the middle of basketball season. I have been dealing with several diagnoses for many years. MANY - ) I have grand kids in college. The one thing about the young age is you adapt and it just becomes your normal life. Not that it is what you would want at all. I seriously can't remember how it feels to not hurt and to have energy, etc.

I did manage to play sports through high school and went to college, married young and have 3 children. I did have to go on disability at 43. I am still trying to find a med that works.

I don't know that I am much help but know that I care and you are going to find that this forum is full of caring people and someone will answer who is going through this themselves with a child right now. Things have changed so much since I first got sick.

Come back often. We support and learn from each other. It is a wonderful group of people.

I am going to suggest something that might make your post easier to follow. If you break it down into smaller paragraphs, it will be easier (at least for some like me):o)
to read.

I will be looking to hear from you more. I wish you and your family the very best and look forward to getting acquainted.

Blessings.
Possi

Hi,

I gotta say, I felt really sad when I read your post. To be 13 years old and, not only diagnosed with AS, but taking such powerful drugs is pretty unsettling. I have no idea where docs start, drug-wise, with a youngster but did they not talk about an nsaid? I think Joyce is right about one thing, and that is that kids seem to adapt better, psychologically, than us "old folks".

Best of luck to you and your son,
Jessie

Thanks so much Possi and LadyBones! Possi you are so right about you can mess with me but leave my kids alone! That's exactly how I feel about AS!

LadyBones, one thing I was told by my doctor when my son was first diagnosed and I was devastated and angry and just wanted to protect him from everyone and everything is to let him be normal. Kids will adapt if you let them...which includes me, Mom, letting him play soccer even when he's in pain and getting his AS kicked on the field because he loves it and not to let the diagnosis disable him.

Anyways, today at the rheumy, they changed his methotrexate to the injectable type to try to eleviate the stomach pain. They also increased his folic acid and added prisolec to help the stomach too.

Oddly enough, my son was thrilled to get an injection instead of swallowing those pills that he knows will make him vomit or want to anyways.

Also, LadyBones, I think the ibuprofen is a nsaid. His rheumy said today that after 10 more weeks of my son injecting himself with meth., he will probably switch him to sulfasidazine (sp?) which he says will do more to help the spinal involvement.

I talked with him again about biologics, but he says they are not approved for use in children and he does not feel comfortable prescribing them until they become FDA approved for that use. He also mentioned the cost

Thanks to both of you again for your replies! I feel much better knowing I have someone to talk to that understands the pain and frustrations of dealing with this illness every day.

I understand your son's preference to the injection over the pills. I preferred it also. My stomach was 100% better! The only thing is that it just didn't work for me.
I hope it helps him.

I have been thinking about you since I read your post. It is just devestating to have your child in pain. Pain is so all consuming.

I do remember though just playing right through the pain and I can even remember the expression on my mother's face. My RA was very bad when I was about 15 and my arm was in a sling for my elbow (which I later had surgery on). I took the arm out of the sling and played in the finals of a District Basketball Tournament. I don't remember it hurting at all during the game but I remember the painful night. I certainly was not going to complain though. Kids are just tough.

When the horse fell with my grand daughter and fractured her spine, I asked her what she did and she said, "I got up and got him up and got back on him. He had to know that I wasn't afraid." She was 11 at the time. Her back still bothers her at 16 but she never mentions it. I asked her at Christmas if it hurt her much and she said, "Only if I stay in the mall too long." Standing and walking too much hurts her.

I will be thinking of you. Come back often. It has helped me so much to have this forum and I have made some wonderful friends here.

Hope you all rest well.
Blessings.
Possi

Hey there, welcome to kickas.
By the way rule #1 never appologize........ We are all here to help and support one another. You will learn a lot here.. I'm not exactly sure as to the advice I would give you at this point. I am only now finding out that my 23 yr. old has AS and he's on his own. I was an athlete all my life until about 10 years ago. I know that I attribute much of my early year success with AS was due to my undying love for sports. Not sure if that helped or hindered though. Not much help here am I? I hope the Rheumy gets him off the MTX soon though. It really saps everything out of a person and the last thing a 13 yr old needs is to feel alienated from his peers or his sports.
Hang around and get to know everyone.
Cindy

Hello there and welcome. I've sent you a pm.

Hi and welcome aboard. I'm like your son, eat sleep and die playing soccer! I'm 26 and have been diagnosed with this disease for 5 years or 6 years now. I really can't remember anymore. Although that's how long I've been diagnosed, I've had it a lot longer. I think it probably started around 15. I still played soccer and to this day, I play soccer. And everyone is right, younger people have a tendency to adapt. I know when I play soccer, I'm going to pay for it that night/next day, but I do it week in and week out. I've been told it doesn't do any "extra" damage to your body, so if you can tolerate it, go! And off I went. Now, I had to cut down from 5-6 nights a week to 2, but I still do what I love. I couldn't get around playing all those nights, my body had no time to recover, but only doing two nights a week, isn't bad for me and I love every minute of it. I'm not a big medicine person, and the medicine they did put me on, I was severely allergic to, so after trying several different kinds, I gave up on that route. If the pain is bad enough, I'll take some Tylenol or Aleve, otherwise, I just deal with it.
I also seem to have a little higher threshold for pain, as I've broken my wrist and shattered my elbow in the past and didn't think twice about it. Was more mad that I had to go the ER then anything.
So, hopefully your son will find something that works for him and he can keep playing soccer. It was hard for me to cut back at first, but in the end, I knew it was the best thing for me.

Yes, ibuprofen is an nsaid. I should have said a prescription nsaid, ie-Indocin, Voltaren et al. I think with most adults that is where a rheumy will start. I don't know about kids and then again every doc is different in his thinking. I have never taken metho. or sulfa. I once asked my doctor about taking methotexate with Humira and he said there is no evidence it helps or is needed.

I can't believe your little guy prefers an injection to pills. Altho, I have some grandchildren that have no problem with needles and, as a matter of fact, like to watch! I was a screamer and fighter, lol.

I really do hope you and your son feel much better very soon.

Jessie

Hiya Welcome to KickAS,

My son was younger we had some fun getting him diagnosed etc, and he's been pretty bad. We did the ethos of the Low Starch diet which is on the front page of the site, kids need carbos so we replaced everythiing starchey with wholemeals and reduced the portions of those. Filling him up on veggies and protein.

It worked for him just over two weeks, and has done several times.

the other thing that worked well was rest from contact/ high impact spots.

He;s just had another year off as he did himself in big time his first year of high school. He's now surfing etc and although not low impact better than he was.

The other thing that helped was that he'd get alot of chest infections and get pretty ill, on a regular basis. We found that that sorting that out and it took quite a few courses of anti biotics also helped him too.

He's intolerant of nsaids, and he gets suspicious bowel problems which may well be Inflammatory bowel disease, but by changing his diet etc we also eliminated those.

I'm not clear if your son has the psoriasis as well as you, but if that is the case I'd be looking at gluten and diary as possible dietary contributors rather than the low starch diet.

My son has enjoyed his last year, he says feeing that much better is so good, but I know he dreams of playing rugby again, and he is determined to but is waiting for his body to stop growing so he minimises damage, ( well smart I reckon ). He now acknowledges when he's having problems and rests up a bit.

I do n;t know if this will help, I understand the huge worry this is for you, and the suffering that kids go through.

dave