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Back on the Dreaded Pred

Location
Canada
So my son's has been feeling bad since the end of April. It started with a few days here and there of the overall bad feeling and some abdo pain and then WHAM his heel started to hurt for no reason. And I don't mean it just hurt a little, it hurts so much that he can't lie on his back in bed with his foot resting against the mattress and he can't bear any weight on it. Then the bad feeling (kind of like he has the flu but he doesn't have the flu) wouldn't go away. He has missed nearly 3 weeks of school. :( Of course this has all happened just after he had his GI and Rheumatology where we reported that everything was great. :voodoo:

To complicate matters, at the time of our the last appointment, Rheumatology decided to try and wean him off Sulfasalazine so we reduced the dosage by 1/4 for about 2 weeks. Once the heel pain set in I upped the Sulfasalazine back to the original dosage. However, the heel pain has not gotten better and the overall bad feeling his still there. So we saw Rheumatology today and as I expected they have put him back on the dreaded prednisone. And this Rheumatologist must have a go big or go home attitude because they put him on 40 mg. Not sure what the taper will look like, they will advise on that when they see how he responds. Not ideal but I hope it makes the foot better and gets rid of the overall bad feeling.

Oddly, through all of this we had a fecal calprotectin done and it came back NORMAL. WTF!!!!! I HATE this disease. :ymad:
 
I love pred....I hate pred...I love pred.....I hate pred!
I completely understand.

I hope this helps his heel and makes him feel better. So is he able to keep up on homework?
 
Location
Canada
OMG! 8 hours in and I have a different kid! He's laughing and joking and ate a decent amount of dinner. At the moment I LOVE pred!
 
Location
Canada
Glad it's working !!!
Have they mentioned AS???
Yep. They check his back like crazy every time we go. I have read that it often starts as enthesitis in kids. :ymad: He is negative for the HLA B27 gene, although that doesn't necessarily mean much. I had, previous to this latest incident, convinced myself that last year's enthesitis incident was a one off event and that he didn't really have arthritis/enthesitis. Can you say HEAD IN SAND! :ybatty::ybatty::ybatty::ybatty::ybatty: I am now going to be vigilant with keeping track of the symptoms and if the pred and the regular sulfasalazine dosage don't make him feel GREAT I am going to be pushing for a change in treatment (i.e. pull out the big guns).
 

DustyKat

Super Moderator
Hey Twiggy...:hug:

I am so sorry to hear that you lads pain didn't improve and Pred was pulled back into the mix. :( It's a bugger of a drug but surely can work wonders. (((sigh)))

I think, but don't quote me on this, enthesitis is associated with axial arthritis?? If so this type of arthritis runs independently of intestinal activity so may well explain why his FC is normal.

Good luck! I hope things soon settle...:getwell:

Dusty. xxx
 
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