Drug options

[my little penguin]

OK - I feel better if I know there are some options
outside of LDN
Are there any other options left?

Ds took 6-mp with allopurinol never got to therapeutic levels without shunting it to his liver.
MTX- he never was able to wean off 20mg of pred since he had vascultitis
Remicade- allergic reaction
Pentasa - did nothing
We just pulled asacol HD

So is there some combo I am missing
I assume there is only cimzia ( which is not approved for kids)
or stelera which is not approved at all yet.

 

[Farmwife]

:hug:
Would it help to put him back on full EEN again?
So whatever med you use might have to use has an easier time to work?

LDN is the only other med I could think of. Sorry.

 

[Clash]

Did the MTX cause the vasculitis? C had symptoms after starting Remicade up until we added the MTX. It really seemed to give the Remicade a boost to rid the rest of symptoms. Of course, now we are again in unchartered waters since we dropped the MTX, but C is doing really great right now.

I was going to mention the Stelara but it seems you already have.

 

[Clash]

Could you add enotcort for a time to the Humira in hopes of getting things in line or are you going to have to drop the Humira, due to that skin reaction?

 

[Maya142]

Second the MTX! Made all the difference for my daughter- Humira did nothing without it but was like magic once we added it.
Maybe if you tried a lower dose it wouldn't cause Vasculitis?
My daughter's GI said that she would be willing to prescribe Cimzia for my daughter even though she's not legally an adult. However, she is 16 so I don't know if they would prescribe it for a much younger child.
Also, have you heard of Simponi? It was just approved for Ulcerative Colitis and I think it might be in trials for CD. It's a shot, once a month I think. It's used for Ankylosing Spondylitis which is why I know about it.

 

[my little penguin]

Mtx did not cause his vasculitis .
The theory was he had vasculitis as an EIM from uncontrolled crohn's since it would disappear at the higher pred dose but come back as soon as we started to wean again while on Mtx.

Clash my concern is he is building antibodies and his immune system is fierce and known to progress to anaphylaxis .
It takes his system time but once he starts reacting every single time his body sees " it" again it gets worse.
It happened with remicade, bees, pollens , and food.

So although the reaction was minor I don't like the path it seems to be going on
And am not sure how to keep him on humira long term without going down the same path again.

I will see what his docs suggest in terms of stopping the antibody production.
I know Mtx reduces the risk but not sure how well it slows down the progress after its begun ( which I am afraid it has in his case)
Just glad he is nine so he is not stressed about the red spots in the least .

 

[polly13]

Lucy is on metho with humira and it is definately working. As this is last chance before surgery for Lucy I have done some looking at other drugs particularly stelara my sister is a drug rep with Jansen cilag and it is one of her drugs the reckon it will have a crohns license early next year at which point the general consensus is that it will be used in paeds, however I really wouldn't be comfortable with dd being first paed patient to get it! However I think it is probably the most promising drug in the pipeline. Helmic worms are also getting some good results but again to the best of my knowledge not being used in paeds yet.

We are as usual about a month behind where you are with treatments

 

[DustyKat]

I don't know of any other meds and combos apart from what you have already mentioned mlp but...

Would the older drug Sulfasalazine be worth try, given the large bowel involvement even though it is CD? I don't know given the potential side effects it can produce and so the push to the newer 5ASA's for the majority of folk.

Dusty. xxx

 

[Kev]

I'm not going to make a sales pitch for LDN. But I am intrigued (OK, just old fashioned nosieness) about what the issue is with LDN as an option? A "fierce immune system" might actually make LDN work faster (that is just a hunch, I wouldn't put any stock in it).

 

[my little penguin]

http://science.howstuffworks.com/life/endorphins.htm

Kev
Issue is simple endorphins

Not enough is known at this point of what happens to a developing brain ( ie a child)
When you keep over stimulating the hypothalamus to produce more endorphins.
Endorphins as in too much or too little can cause a host of issues
motor tics ( Tourette's syndrome)
Depression
Alcoholism
Bipolar
Obsessive compulsion disorder
Rage or aniexty attacks
And the list goes on and on......

LDN blocks opiate receptors and increases endorphins .

An adult taking this is one thing the brain is done developing
But anything that has the potential to alter "who you are" for the future
Is just not a risk we want to take .

We also discussed it with our doc early on. He had spoken with Dr. Smith at penn state for us. He basically said the studies were showing this was a good drug if you only needed a small "nudge" to get to remission. I know that is not the experience of most here.
I also know it works for alot of kids and adults here. Not arguing that fact.
Nor am I arguing it causes any of the above list.

I am just stating what is already known in some people as adult
If your endorphins are "not just right" then you have serious medical problems
OCD , alcoholism, Tourette's , bipolar , anxiety , depression , Parkinson's etc....




Everyone has their area of "not a risk " they want to take .
LDN is ours . I have pulled many papers and done my research .
Our decision may change later but then my child will be older .
He is not even a teenager yet his brain will change rapidly prior to that.
For now its just not for us.

I respect everyone's decision to make a choice they can live with for themselves or others .
This is one drug that is not an option for us and not something I want to debate about.

 

[Tesscorm]

I only have a couple of other suggestions but none have the solid background of the typical treatments

There is also Tacrilomus (spelling???) that Izzi is on. If I recall correctly, Izzi'smom 's last post was that Izzi continued to do well with this. But, I don't believe it is a drug commonly used for crohns or kids???

I actually just recently read a thread where a member was considering a trial for Traficet-EN. I know virtually nothing about it other than it's currently in Phase III trials - here are two links:

http://www.crohnsforum.com/showthread.php?t=10424
http://www.chemocentryx.com/product/overview.html

And, there's also the SSI vaccine that is running a current trial in Canada (Vancouver, I think). I know I've read of a couple of members who are either in the trial or were applying for the trial.

I know there isn't enough of a history or known success rate with any of these to really ease your mind but just a couple more options that perhaps you haven't explored yet.

 

[my little penguin]

Thanks for the info Tess
I don't think his nephrologist will permit anything that potential causes kidney issues ( Tacro) since he already has those.
But good to have the info in case we need it.

 

[Twiggy930]

What about methotrexate and sulfasalazine as a combo? The only side effect my son has had from the sulfasalazine is the odd headache (really not many) and a wicked stomach ache if he does not take it with a full meal (easy to solve that problem). I know the consensus is that it is a drug that isn't very effective and I'm pretty sure it on it's own wouldn't do the trick but maybe it is all that is needed to give the boost with the methotrexate.

The SSI trial (by Q Biologics) is not currently accepting paediatric patients.

Good luck and I hope you find the winning combo soon.

 

[my little penguin]

he was on methotrexate and ascaol hd at the same time with pred.
last summer

 

[Twiggy930]

When my son had his initial bout of enthesitis GI put him on Pentasa in addition to the azathioprine that he was already taking. This combo did not improve anything. When we finally got him seen by Rheumatology they scoffed at the addition of Pentasa and preferred sulfasalazine. This combo has worked for him. A few months ago we tried to take him off the sulfasalazine (following doctor's advice) and within 10 days of reducing the dosage by 1/4 he couldn't walk due to enthesitis and had terrible abdo pain. GI claims that during this time his Crohn's was under control but Rheumatology disagrees. In any case, he went back on the sulfasalazine and has been fine since. I mentioned the combo to you because of the vasculitis. Not sure if sulfasalazine is used to treat vasculitis but it is used to treat rheumatoid arthritis, where as Asacol and Pentasa are not. From what I understand they do not entirely know why sulfasalazine works for RA. Just wondering if it might be beneficial for your son given his presentation of EIMs. It's a stretch I know.

 

[Amy2]

So very sorry, MLP.

 

[Tesscorm]

MLP, just came across a thread re Vedolizumab ...

http://www.crohnsforum.com/showthread.php?t=14087