When is it time to stop?

[Farmwife]

Grace's GI believes she's suffering side effect along with a flare.
Grace is just not the same.
Nausea, irritability and lethargy are what the GI believes are the side effects of the Mtx and or the humira.

Here's the kicker, the GI and rheumatologist don't want to change ANYTHING in fear of bringing on a huge, hospital stay kind of flare, both for her JIA and IBD.

For those who have "failed" meds, at what point did you decide it wasn't worth taking it.

 

[theOcean]

Around the three/four month mark. Remicade failed for me completely and utterly and I had developed really high antibodies to it. From what I've heard about Grace, it may be time for her to try a biologic other than Humira. Do an antibody test, and then depending on how that goes: see if it's time to move on.

 

[Maya142]

When we thought M was reacting to methotrexate, we skipped a week. In her case, she only got nauseous and dizzy the day after the mtx shot, so it seemed pretty clear that it was related to that. Sure enough, the week we skipped the shot she had a great weekend - no nausea, no dizziness.

Giving up methotrexate was a very hard decision because it was helping her joints so much. We have really been unable to get the arthritis under control since she gave it up. But she's a teenager and it was her decision and she knew what the consequences would be (this has happened before with mtx).

I hope you're able to figure out what's making Grace so miserable:ghug:
It's especially hard to make these decisions when the meds are helping!

 

[Farmwife]

Thanks to you both.:hug:

Remicade has already been brought up by her rheumatologist but he wants to give humira more time.
Seeing that she's five, I don't know to many other drugs available for youngsters.
None of us want to burn the bridges until we have to but how much can she endure? It's very sad and frustrating.

 

[theOcean]

Even if he wants to give her more time on Humira, doing an antibody test will help figure out if more time will even do anything or not. I got to the point where it did absolutely nothing for me with Remicade because of my antibodies.

 

[my little penguin]

There are a lot of things that can be done with humira before giving up on it.
Increasing frequency or dose or both.
Also humira is suppose to work in 3-4 months for adults but they are given loading doses
If I remember right grace didn't have a loading dose .
DS started humira last April .
He started to feel better last October so his was 6 months to start and 8 to feeling good .

Mtx there are more than a few tricks for that as well
Time of day made hugs difference for DS
Too close to bed and he was still fatigue most of Saturday
His sweet spot was around 3-4:30 pm
Not sure why but by time the Mtx kicked in side effect wise he was asleep.
Folic acid can also be added
Our Rheumo had other things to add as well.
If DS ends up adding Mtx ( still up in the air at this point ).
I will let you know .
How is her blood work imaging etc...,?

Our docs like to use objective evidence when deciding to switch meds .

How long since her last scope ?

DS was always scoped prior to med change so we would know where we were starting at .

Good luck

 

[Sascot]

Wish I had some great advice. Such a hard decision to make. I guess you have to weigh up whether the meds take away enough symptoms to make the side effects worth it. Sorry she is not doing so well! :hug:

 

[Clash]

Ditto to what MLP posted. Before dropping Remicade we upped the dose, tweaked the schedule a few times added MTX and before dropping remi we had an MRE to see what progression had occurred, a colonoscopy would not been as helpful due to the location of his disease. Also an antibodies test was carried out.

I would think the GI/rheumatologist would want to exhaust all options with a med to see if tweaks would allow her relief and healing before discounting it.

I hope you find a way forward that brings healing.

 

[xmdmom]

Is Grace taking folate?
Is it possible to have the two doctors speak to each other to get on the same page?

 

[Maya142]

If it is MTX - you do have some options. Does she take Zofran? Daily Folic acid made a big difference for M too. I have met some Mom's of kids with JIA that say they routinely take "methotrexate breaks" if the side effects get to be too bothersome! M has tried MTX three times now and each time it worked just as well (but also made her very nauseous).

Also, we found that M responded well to Arava (Leflunomide) which is used in Polyarticular JIA. If IBD is the bigger problem then you could consider Imuran/6MP.

Fwiw one of our neighbors has Rheumatoid Arthritis and she said that before biologics rheumatologists used Imuran for RA quite often. So it potentially could help Grace's joints too.

 

[Farmwife]

theOcean
I will be asking for that test before things change.

Mlp
Next scope is planned for August I believe. Her GI wanted the one year mark. Still have to schedule it. Thanks for the reminder.

Sascot
I feel the same way. If the drugs are doing more good than evil I want have her stay on them but I feel we might be pushing the envelope. I just want more time for them to work.

Clash
If these two big drugs aren't not working you bet I'll be pushing for more answers as to why. I still want a pill camera for her.

xmdmom
Yes she takes folate. She's also living off zofran for the nausea. Her doc put her on Levison(sp?) For the cramping but that seems to be wearing off.
As to the docs working together.............umm............welllllllllll..........no.
It's not that they won't it's that they both have different approaches. The GI is the "bottom up" approach and the rheumatologist is the "top down" approach.
Her GI would have never started with humira but her rheumatologist would have never started with 6mp. Her GI will do long pred tapers where her rheumatologist uses ped burst and does not want Grace on any pred if possibly.

Maya
All great suggestions. I think that's the next step, take her of mtx for one week and see how she feels.

Next mtx dose tonight. Well see how she does over the weekend. I hope we can have a good memorial day.

 

[Brian'sMom]

We went thru meds-adding new--& increasing doses-etc, EEN & TPN....and things just kept getting worse and worse... and what finally worked was surgery. Our meds are the same as they were before his surgery and now things are good. If in Sept things look good in lower colon they'll pull back on some of them. So it was the surgery he needed. Our Gi at mayo said DS was at the point that no medicine was going to get on top of his crohns flare. So that's why he didn't jump to Stelara, Now we still have that one in the wings.

Hugs and prayers sent your way

 

[SupportiveMom]

Sorry I am joining this conversation late. As you probably know this is pretty much where we are too. I know you are trying the best to make the right choices when the choices aren't clear to make. I get frustrated things aren't so clear to solve with this disease for our kids. What gets me more frustrated is that my doc says this situation isn't common but on this forum there are a few of us at this stage I think.

How about switching Immunomodulators? Has she done Imuran before?

Have you checked the Humira levels in her blood (not just antibodies, but levels of the drug in her system)? We have been on Humira now for 6 months with no change in symptoms. After the results come back we will decide to double up (if the drug isn't present enough in her system) or drop it (if the drug level is where it is supposed to be in her blood).

This is where we are going in the next 3 months of her treatment, maybe me explaining it might help you or give you some ideas: Dropping Humira (most likely), adding Imuran & keeping Methotrexate at the full dosage. at 6 weeks into the Imuran, start to drop the dosage of Methotrexate slowly to 1/4 the dosage (the purpose of this is Imuran takes a bit to start working, and no biologic & barely any Immunomodulator will send her right back in the hospital. We are also religiously doing cortifoam & 5-ASA rectally, and on full prednisone (with the plan to go to 20mg within the next 4 weeks)

I don't think the 'big guns' approved for kids work at all for my girl. At this stage I am hoping a combo of the 'smaller guns' work. If not and we don't get approved for a trial, it is surgery, and why I am dealing with second opinions before surgery. Have you had the surgery talk yet? Is that an option?

 

[Farmwife]

GI called.
It's a rheumatologist issues because it's all side effects....... in his opinion.
So I'll call the Rheummy tomorrow.


Update:
Gi nurse said to reduce her Miralax and add Metamucil to her formula.
Then the nurse said the GI is leaving in August :eek2: and the head GI will take Grace's case. Ya, I'm was shocked.

 

[AZMOM]

As usual, MLP has great advice.

Talk to the doc.....Ask about the Zofran. Work on the time interval. When Claire was taking it when she was 4, we'd give her one benadryl and one regular tylenol at dinner and then the shot about an hour later. That was on the advice of her Rheumatology.

Hope you can work it out!

J.

 

[DustyKat]

We haven’t been in this situation Fw but wanted to send you much love and healing thoughts that Grace soon finds lasting relief, bless her. :heart: and you too mum! :ghug:

Dusty. xxx