Kidney Pain(?)

[glen26]

Hi,

My son (16) has Crohn's disease and has just started Humira - 160mg loading a week ago. Since then he has had severe pain in his kidneys, normally alternating between the two but more on the right side. On the weekend he had instance of blood in urine x 3 then it settled down. We went to hospital on Monday for xray to see if he had kidney stones -ve. Spoke to drs today and basically they have said he will have to put up with the pain. His bloods taken on Monday are looking much better so the humira appears to be doing its job but i'm concerned about the pain. He hasn't been at school for weeks due to symptoms and i thought at last we would get him back but this is really holding him back.

He's on doxycycline for his skin - I wonder if this is suppressing an infection but then it would show up on his bloods?

Sorry for long ramble - just a bit confused

Diagnosed 2007
Pentasa - 3 gms 2 x daily
Methotrexate 25mg 1 x weekly
Folic acid 5mg 1 x weekly
Doxycycline for skin
Vitamin D
Iron supplements
Probiotics
Zinc

Thanks

 

[Farmwife]

Bump

Hi and welcome.
I'm sorry your son if having more pain.
I'll page in DustyKat, MLP or anyone that knows more then I.

 

[DustyKat]

Hi Glen and :welcome:

I am so sorry to hear your son is having these problems.

My children have not been down the Humira path but in view of the type of medication then infection is certainly are scenario thay should be investigated. I don't know how reliable bloods have been in the past for your son but for some people they aren't indicative of what is happening. My daughter was those people so I tend not to believe what they tell me unless what I am seeing in front me matches. My son's bloods on the other reflect everything.

Where is your son's Crohn's located?

Although not bilateral pain my daughter has certainly had issues with Hydronephrosis affecting the right kidney in the past. It occured when her swollen and inflamed ileum was pressing against the right ureter causing an obstruction. That obstruction then caused urine to back up into the kidney causing it to swell and creating severe pain.

I don't agree with the doctors saying that he will just have to put up with the pain, that sucks. If they don't have an answer then they should be doing their utmost to find one. He is 16 for gods sake, where is their compassion. :ghug:

How is he doing now, is it settling at all?

Dusty. xxx

 

[Tired]

Did they check if he has proteins in his urine? Anti-TNF in rare cases can induce Lupus, and Lupus likes to attack the Kidneys.

 

[glen26]

Hi. Thanks for your replies his crohns is in his colon with some evidence of it in his stomach and small intestine. He had a flexible sig about 4 weeks ago and his crohns was severe in the 20cms they could see so we assumed it was at the same level of flare throughout . At hospital on Monday they x rayed his kidneys and tested his urine looking for kidney stones. Once they discounted kidney stones they weren't really interested and said it was nothing sinister so they couldn't do anything further


He went to school today for whole three hours yay so today pain not so bad but it does come and go. I have an appt with our GP tomorrow so will discuss further with her - she's fantastic and has known Sam since he was a baby and understands him well. The thing is he's very stoic so if he says he's in severe pain he's not joking

 

[Sascot]

I also agree that he shouldn't have to "put up with the pain"! As much as it probably isn't a good thing to have to change meds, there are others out there so why should he have to live with pain if there are other choices - meds are supposed to improve you quality of life.
That being said, maybe it's best to give it a few weeks to see if it settles, but after that I wouldn't put up with it (my humble mommy opinion ) . Hope the GP has some answers.

 

[DustyKat]

How did the appointment go Glen?

Dusty. xxx

 

[glen26]

Hi Dusty, sorry haven't had chance to get to the computer. I spoke to our dr and she was happy with Sam's improvement too so deferred to the specialist. She thought like you it was inflammation pushing on his kidney. I have to say though, Sam is a different child, he's so much better, that Humira is amazing! He went out yesterday to watch his school in the rugby final and has been cooking some food, which is a really good sign of how he feels.

We go back on Wednesday for another two shots so we'll see whether he has anymore pain and blood in his urine this time. As I said, it appears this drug will work for him!

 

[DustyKat]

Thanks for the update Glen and a fab one at that! It is so good to hear that your lad is responding and I hope more than anything it stays that way.

Good luck for Wednesday and please let us know how he gets on.

Dusty. xxx