Higher dose Mtx with humira

[my little penguin]

Has anyone increased Mtx with humira or remicade ?
Right now this is being discussed as an option for Ds to calm his sweet syndrome
He increased once before from 7.5 mg to 12.5 mg .
Dermo wants to increase it more to 15 mg .
Waiting for ok from other docs .
What is considered high dose for Mtx ( oral) with a biologic for kids ??
Any increase in side effects ?

 

[Maya142]

Both my girls did up to 25 mg of MTX with a biologic. Our rheumatologists did not consider 15 mg high, they considered 25-30 mg high.

Both my girls had side effects with 25 mg - nausea, vomiting and dizziness for the younger one. Once we lowered it to 15mg, she was still very nauseous and dizzy but did not throw up any more. She eventually started refusing to take MTX because of the side effects. Zofran, other nausea medications, extra folic acid, Leucovorin helped a little but not enough.

However, she is VERY sensitive to MTX and was nauseous even with 7.5 mg.

My older daughter was on 25 mg (1 mL) of MTX with Humira. She was very nauseous and tired with it, but didn't vomit. As her joints got better, it was lowered to 15 mg (0.6 mL). She does well with the 15mg dose, though she does need Zofran once with it usually.

Both my girls were on the injection since they had worse side effects on the pills. They were never able to tolerate the pills, except at very low doses (under 7.5 mg). Once we increased the dose, they got mouth ulcers and very nauseous with the pills. Switching to the injections helped with some of the side effects and both our GI and rheumatologists prefer the injection anyway.

Good luck!

 

[my little penguin]

Ds had more issues with injections ( fatigue mouth ulcers etc..,)
Pills he is fine with as long as he takes 2 mg of folate

Have to wait for Gi /Rheumo anyways not sure if they will stick with pills or not
Three docs agreeing should be interesting

 

[my little penguin]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4133437/

Good paper on Mtx and the use in crohns etc...

 

[pdx]

My daughter has been taking 15mg of mtx from the start, and I have never had the impression from our doctor that it is considered a high dose. She doesn't have many side effects from it, just very occasional nausea and dizziness, but she always takes zofran 2 hours before. She did have a little more nausea when she first started taking it; I wonder if she's gotten used to it, or if she's getting an effectively lower dose now that she's 105 pounds rather than 75 pounds.

Hope you can find something that helps with the Sweets syndrome.

 

[Clash]

C has been up and down the spectrum of dose amts of oral and injectable mtx with both remicade and humira.

We got the most benefit from mtx when the rheumatologist moved him from 10mg (equivalent for injectable) to 25mg equivalent in injectable form. But the benefit was on the joint side only as far as I know.

C hasn't had any side effect issues with mtx no matter the dose so far.

 

[Maya142]

I have heard that too and actually studies show that injections aren't necessarily better with side effects.

Our girls just happened to tolerate them better, but there's no harm in trying pills and seeing if he tolerates them. You could always switch to injections later if necessary.

The other nausea medication we tried (when Zofran failed for my younger daughter) was Kytril - Granisetron. Similar to Zofran, but used more for chemotherapy. It also helped but not enough and insurance was not happy about it (I think it's more expensive).

Zofran does help my older daughter a LOT with MTX - she takes it half an hour before the shot and then does the shot right before bed. The next day she is a bit tired and sometimes nauseous, but it's not so bad and she is used to it.

Really hope it helps him and you can get all three doctors to agree and talk to each other (that sounds like my own personal nightmare)!

 

[my little penguin]

I didn't think 15 mg was high dose just wasn't sure what was for kids ???
Seems like 25 mg is Max dose injected
Not sure on oral

 

[Maya142]

Our rheumatologist switched from pills to injections if the dose was higher than 15 mg. I don't know what other doctors do - I suspect it varies. I know with the higher doses - 20-25mg - injections are used more often.

 

[Clash]

C's GI and rheumatologist both said the highest they would go was 25mg oral and whatever the equivalent was in injectable. I'm not certain of they meant for C or in general.

 

[Maya142]

Two rheumatologists we have seen - one adult, one pediatric said the highest was 30 mg - I guess that would be 1.5 mL by injection? We only went up to 25 mg (1 mL) and that was high enough for us!

It did REALLY help both girls' joints at that dose, they just could not tolerate it. Some kids have absolutely no issues though.

 

[my little penguin]

Ok thanks that makes sense
Will see what the docs agree to
Could be a while for them all to talk though