Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Newbie just diagnosed last week

Hello to everyone that reads this
My name is Kate and I was recently diagnosed last week. Here is just a brief history of me just so I'm not such a stranger.
I have had more then 10 surges in my life. First one started when I was 6 on my knee followed by a hand surgery at 11. Elbow surgery at 12. Back surgery at 14 and 2 heart surgeries. Just to name a few. I have been a volleyball player since I can remember and went to college and played at a division I school. That's when I started to have more pain then normal. I had swollen hands and my athletic trained just thought it was jammed fingers bc I was a setter. So I'd get injections almost every week, steroids, and lots of therapy. But nothing seemed to work. So I suffered thru my 4 years kept going to the doctor and never got any answers of why I was in pain and why my joints were so swollen up until last week.
I'm new to all this and I am looking for any advice or any information. I've read about going gluten free and I am considering doing this.
My doctor put me on some medications but I'm having problems with one of them. The one I'm taking called Hydroxychloroquine and another called sulindac. I'm having stomach pains with them and can't eat anything. I do take a glass of milk with them and a small piece of gluten free toast and that's all I have ate since being on these medications. I am just curious if anyone else is taking these medications and what they have done to not be so sick on them. Any advice is great advice to me because I am a deer in headlights when it comes to all this.
Thanks for reading and taking the time to get to know.

Lost and confused,
Kate
(I've posted in other forums but I'm so desperate for help)

Hi Kate,

I've taken hydroxychloroquine for about 3 years now without any side effects, but that doesn't mean you're not experiencing some from it. My bet would be on the NSAID though. Most NSAIDs give me stomach pain, nausea, and/or diarrhea. Definitely let your doctor know about your stomach pain and inability to eat as soon as possible. Your doctor will probably want you to stop one or both and see if your stomach symptoms stop, and if they do, to restart them one at a time to determine which is the cause. This is always the tricky thing about starting more than one medication at a time. How long have you been experiencing this stomach pain? It's possible you have a bit of gastritis going on, which NSAIDs can at times cause.

After a year of hip pain, my son was diagnosed last year with AS at the age of 18. Arthrotec (a NSAID) was effective for only about 2 weeks. He started Humira the next month and felt incredible relief within a day, and has a resumed his very active physical life ever since. He still feels some pain/discomfort as his next injection approaches (every other week) and of course he does not want to stay on this drug forever.

After much reading and research, he decided to eliminate starch (not just gluten--must be all starches), diary and processed sugar from his diet. There is scientific data to support the starch theory with AS symptoms. Dairy and sugar are known to be inflammatory. After a couple of weeks on the diet, he no longer feels any symptoms as his next injection approaches. We will talk to his doctor about trying to go off the Humira. This diet might seem overwhelming at first, but once you get the hang of it, it encourages a healthy, balanced diet. Very much like the popular Paleo diet.

I just read Carol Sinclair's "The Low-Starch IBS Diet." Fascinating, but the recipes are outdated and not particularly healthy. I've been going to Paleo websites for great ideas (coconut flour!).

welcome jsh. you should be reading the alternative site here, if you aren't already. how is your son feeling having this diagnosis (dx)? obviously, the pain is now diminished, but hopefully he will continue stretching and the recommended exercises which can be found at the "home" button above.

he should also sign on here if he wants and check the alt site.

welcome to you all, sequoia