Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club painful heels

Hi,

I don't know if your still there...but I just saw this post now, sorry. What kind of arthritis was your son diagnosed with? Is he just on Humira still? Did that help his severe heel pain? Did he ever have burning in his heels too?

Hi Laurru- I actually haven't been on these boards for a while and just happened to see this. My son was originally diagnosed with undifferentiated Spondylitis, but now is classified as having Ankylosing Spondylitis. Often juveniles who are diagnosed go into remission when they go through puberty, but unfortunately my son did not. Yes- he did have a burning sensation and pain and tightness in his heels, which results from enthesitis, or inflammation where the tendons and ligaments connect to the bone. His was severe enough that it was often difficult to walk and he was having trouble with sports. I had been taking him to the Dr. off and on for almost 2 years with heel pain and just kept getting that it was from overuse and he needed to rest. He was fortunate in a way that his ankles finally swelled because it led to a definitive diagnosis.

He is still (now age 19) using Humira weekly to manage and is having very good results. He had done so well that I kept thinking maybe he was growing out of it, but if he misses a dose, he quickly becomes very stiff and achy, so obviously it is just a case of the meds working very well. He was having some flare-ups about a year ago and the Dr. added Sulfasalazine to his Humira. It worked well and he has now been able to discontinue it. I just mentioned on another thread that as part of a college athletics team, he has been doing yoga twice a week and he is amazed at how much it helps. He says he feels the effects through the next day and he wishes he had taken it up a long time ago. With his Humira, is able to play with his college soccer team and is doing well. His training includes a lot of running and he has not had trouble keeping up. Have you had any better luck with other meds- I remember the first one you tried wasn't working well. Hopefully you have found something in the meantime!

Thank you for the detailed response. Just wondering, does he have any back pain? Did anything ever show in his blood work? Is he afraid of the side effects? This is a really encouraging story that your son is able to do so well from the med. Thank you for sharing this with me.

funny- he just texted me tonight to tell me he is having some back pain. He has had some lower back and hip pain before, but mostly a lot of stiffness there. It is mostly controlled by the meds, although I suspect that compared to a "normal" person he has more pain than most. When he first started his Enbrel 8 years ago, he commented he didn't know that he hurt so much until he started his meds and it felt better, as he just thought that's the way everyone felt. I think he probably had symptoms at a very young age (4 or 5) because he always had a funny, stiff walk- we just didn't know any better.

He does routine blood tests every 3 months and has never had any issues with blood work. The Dr. was actually more concerned about both the methotrexate and the sulfasalazine than about his Humira so I'm glad he has been able to discontinue both of those. Enbrel/Humira have been like miracle drugs for him and hopefully will continue to work. It was a hard decision originally to put an 11 year old on these drugs, but his quality of life would not have been good without them, and we feel like with blood tests, we are keeping a good handle on any harmful side effects.

He has had great results so far, but I do think it is from a combination of meds and constant physical activity. I know that when he can't exercise, he stiffens up quickly. Lucky for us he is our "active" child!!!

Thats really great. Prior to meds, did his bloodwork ever reveal arthritis? Like was anything ever elevated?

He is HLA-B27 negative, but before starting meds, his inflammation markers were through the roof. After starting Enbrel they dropped to normal. He went through a fairly big flare:-p a few years later and tested high again, but returned to normal after being switched to Humira. He has generally tested fairly normal as long as he has stayed on meds- his levels have gone up a few times when he went off meds short-term due to other illnesses.

here's really no reason not to try Humira. It carries a pretty well identical safety profile, since they're the same class of medication. I did extremely well with Humira, though it did eventually stop working for me. Simponi, another TNF inhibitor like Enbrel & Humira, seems to be working for me now. Enbrel didn't work for me either. I don't actually have heel pain as a symptom as of yet, but Humira did wonders for so, so many of my arthritis symptoms.