Rejected Humira, Low prealbumin.. Help!

[mreyn]

Well, it's official. Bloodwork is back and he has no Humira in his system and high antibodies . Drs are looking for someone else for us to go see but in the meantime.. he has low prealbumin... does anyone know what I can do to help that??

 

[my little penguin]

Has he been on remicade or cimizia yet?

 

[mreyn]

We were on Remicade first, had a bad reaction during infusion and tested .. he had built up antibodies and there was no med in his system. Were on Remi for about a year, then switched to Humira which we've been on for .. guess.... yep.. one year. Ironic.

This dr doesn't feel comfortable treating him now since he's failed both meds for kids so he's trying to find us someone who specializes in IBD instead of a general G.I.

 

[Maya142]

Some doctors like to add medications like Imuran/6MP or Methotrexate to prevent your immune system from building antibodies to these drugs. So if he does try Cimzia, I would ask about one of those drugs to see if you can prevent a reaction. Simponi is another Anti-TNF that's being used off-label for Crohn's (and is approved for UC).

Stelara is a completely different biologic which has not yet been approved for IBD but doctors sometimes use if you have no response to Anti-TNFs.

 

[Jenn]

My son had stubbornly low protein levels (albumin) until 6mp was added to his Humira for about a year. It only came up with successful treatment, no amount of supplementation helped. I would think Cimzia or maybe Stelara would be the next choice, since the antibodies are there. Good luck!

 

[Livvies Mom]

So frustrating, but glad your doctor isn't too proud to admit that he isn't the best qualified to help you right now. So many doctors are too arrogant to do that.

 

[Momoftwo]

Jenn, how low was his albumin levels? Dd on Humira and really low level, going to check for celiac. Any thoughts?

 

[ronroush7]

I hope the doctor can find the right meds.

 

[crohnsinct]

sorry to hear this. Stelara is next on our list should my daughter fail anti tnf.

I have seen a few presentations recently that say low albumin means there is inflammation. Is he symptomatic? Maybe it could be as simple as treating the crohns successfully?

 

[Jenn]

momoftwo - had to go dig up his old results since it's been awhile, looks like his albumin was 2.5 g/dL and standard range is 3.5-5.1, total protein was 5.4 vs 6.3-8.6.... looks like it took a few months to increase, didn't hit normal til 8 or 9 months in.

Curious what happened to mreyn, no posts since

 

[Momoftwo]

Jenn, how is that measured , like does it go 2.9 then 3. Because my dd was 1.9 ugh and we are going to do ENT , but he said this is very concerning, as it seems she is malnourished. The irony is she feels better now since dx 1 1/2 ago. Started Humira 20 then on to Humira 40 bi, taken 9 injections so far. Level has been like this for five months now, Humira 40 really starting to help with other issues. Maybe celiac disease is what they are thinking, but I googled and, ugh, I became fearful.

 

[Jenn]

Sorry for the late reply, any response yet? I don't know how low is considered urgent or not, just comparing the numbers. His jumped around a bit before going over the minimum normal. It is so frustrating, my son seemed fine too, but must have had some inflammation where protein is absorbed, because adding protein made no difference but the combo eventually did. He was on the 20mg Humira dose while on 6mp, we went to 40mg after that, once his weight came up too. I am not familiar enough with celiac to know about its effect on protein absorption, but could be manageable?

 

[Momoftwo]

Well allergy testing said she was allergic to pork, beef, gluten, eggs, daily and nuts, so it's absorbency issues, just not sure if celiac yet. I guess with gluten allergy it's close enough, so I'm not sure what they will do as far as adding meds. Thanks

 

[my little penguin]

IgE allergy testing or IgG?
IgG is suppose to be there for foods so not an allergy .

This explains the difference
http://www.kidswithfoodallergies.org/page/diagnosing-a-food-allergy.aspx