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Joined: Apr 2017
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Originally Posted By Frederick
Originally Posted By JaxTee


doesn't it worry you guys taking stuff like Humira? They tell you so definitively not to take it if you have an infection or are prone to infections.



I have been on an Anti-TNF (Enbrel) for the last ten years or so. Yes there have been times when I have had some infection or other because of it. The worst was when I ended up in hospital on a drip of antibiotic. It was soon sorted with no long term affects.

I suppose it must depend on just how bad your A.S. is. If the A.S. is anything like it was for me then you would be more than glad to take just about anything for a bit of relief. Like all medications it is a case of balancing the risk against the benefit.


I get relief with antibiotics. I trust those more than I trust Anti-TNF!

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Originally Posted By NickiHayes

Our first rhuem visit will be on June 22nd, at the U of MN which i am very hopeful about.


How did the rheumatology appointment go?

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Good luck to you son. My AS started when I was 18 (also with uveitis as one of the first symptoms), and I always hate seeing another young person hit by AS.


He who has a 'why' to live can bear with almost any 'how'.
--Friedrich Nietzsche

Sounds like everything takes time, discipline, and patience, and those are seven things I don't have.
--Jon Dore




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Hi, Nicki.

I'm sorry to hear about your son. I got symptoms at about 15 and after being called "chronic lower back pain" and being put on tricyclic antidepressants someone FINALLY noticed the bilateral sacroilitis on an old film and sent me (by then 18) to a rheumatologist.

UofMN is a world-class pediatric medical center. I know this because I interviewed there for my pediatrics residency (I'm a pediatrician, but not a rheum; I think rheum is gross). They have a first-class pediatric rheumatology program and they even train pediatric rheumatologists. I'm sure you've already been seen there, but let me be the first to assure you that he will be in excellent hands there.

Oh, and Wolverinefan, wanna guess where I went to medical school? It'll make you happy.

Last edited by MikeGinnyMD; 07/20/17 11:32 PM.
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I am 21 years old but was diagnosed at 16 almost 17. My symptoms began at 11. Getting this diagnosis so young was hard for me, but in some ways even harder for my mom. She like you researched everything. Every ounce of her soul wanted to fix this. To find a way to take away my pain. I am so thankful of all her knowledge, but at times it could be overwhelming to me as a teenager. All of a sudden this disease seemed all consuming in my life. I wanted to be the kid I was before stepping in that doctor's office. I was relieved to have answers but with my mom pushing so hard it seemed my entire life was about AS.

My mom is here with me writing this post. We would like to share some things we have learned along this path. These are just my opinions so please no one get offended.

Some of my mother's drive to fix me drove a wedge between us. Please don't get me wrong. I appreciated all she did, but I suddenly looked up and realized AS and my health was all we ever talked about. Your son is 13 and has AS. But do not let AS have him. Make this as small of a part of his life as you can. Be there to hold him or hold him up. Make raising him your focus, but don't make curing him your life's mission. Be the soft spot where he can fall and the person he can be grumpy with.

With that said an extremely restrictive diet is probably too all consuming for a kid to follow. It will make him the odd man out socially. It will add the stress of guilt when he eats wrong and then blame himself for his pain. I started to feel like my pain was my fault because of something I did or didn't do. That is a lot of stress for a teenager. And like others have said it may not be healthy for a 13 year old to eliminate carbs altogether. When I was 19 we tried a fast and I ended up passing out in class. Remember he is young. AS will take away so much. So do not add things to that list.

With that said my mom made a strong effort to include inflammation fighting foods in my diet and decrease foods that are known to cause inflammation. She did this naturally through meal choices. Eating healthy definitely helps me feel better. This is not a starch free diet but a healthy choice diet. It will create habits your son will be able to stick with.

Don't make having AS your son's master status. That means AS should not be the thing that defines him. When he or his closest friends describe him, AS should not be in the top three descriptors. This is so much easier said than done.

I found the best thing my mom did was help me to find balance in my activities. She taught me to prioritize my day so the things I had to do got done in case my energy ran low that day. She taught me to manage my stress better. And she does small things to make life easier.

And most of all mom wants you to know that you did a great job getting him diagnosed early. Now find a quiet place, ball your eyes out and say this is not my fault and I cannot fix it, but I can do everything I can to make his life great. There is nothing you can do to take this from him. All you can do is be there to help him find his way with this disease while retaining the things in his life that make him happy.

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I first started with my A.S. at the age of 12 years but was not diagnosed till I was 18. Now here I am aged 70 with a daughter aged early 40s. who shows signs of A.S. but with no actual A.S. diagnoses as yet.

I went with her to her first rheumatolagy clinic appointment just to set her on the right road. I intend to let her get on with it as best she can but am always here for her should she feel the need.

I have told her all there is to be told about A.S. but hope not to interfere in any future treatment she may need. I have told her that if I can live a life with A.S. then so can she.

Naturally I do worry about her but with more modern treatment and not having started till her early 40s. I am on the whole optimistic about her future. She also attends a rheumatology clinic but not the same one as myself.

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