Flaring and adding back methotrexate

[pdx]

We stopped methotrexate last spring, and E has been on just Remicade since then. Things went well until October, when she started having a few mild symptoms about 4 weeks after her Remicade infusion. This month, she's been full-on flaring, this time starting about 3.5 weeks after her infusion. We just got back F Cal results today, and she's at 580.

Remicade is tomorrow, thank goodness, because she's feeling terrible and is losing weight fast (down 6 pounds right now). We'll get levels testing done tomorrow, along with nutrition labs and the normal ESR and CRP. In the meantime, we're going to add back methotrexate, and then we'll decide what to do about Remicade after we get the levels and antibodies results in a few weeks.

I guess that rationally I knew that she was going to flare again sooner or later, but this is hitting me harder than I expected it would.

 

[Maya142]

Oh no!! I'm so sorry to hear that. Will they add steroids while you wait for MTX to kick in? It takes a while (unfortunately).

Supplemental EN should help if she is losing weight that fast. Even just drinking something like Boost or Ensure, if she can tolerate it. Or the NG tube, which she knows isn't so bad now.

Sending hugs :ghug:.

 

[pdx]

Oh no!! I'm so sorry to hear that. Will they add steroids while you wait for MTX to kick in? It takes a while (unfortunately).

Supplemental EN should help if she is losing weight that fast. Even just drinking something like Boost or Ensure, if she can tolerate it. Or the NG tube, which she knows isn't so bad now.

Sending hugs :ghug:.

Thanks, Maya. We're going to wait to see how she responds to her infusion tomorrow before deciding on steroids. If the symptoms disappear after the infusion, like they have the last two times, and her Remicade levels come back low, we'll move up her next infusion, and increase her dose. If the symptoms stick around, then EEN or steroids are next on the list.

Strangely, while she took about 6 months to respond well to Remicade, she had big improvements after just 2 weeks when she started methotrexate for the first time. That may have been just a coincidence, but we're hoping to see the same thing this time around.

As for drinking formula, she hates to do it--says it makes her feel really nauseated even when she sips it super slowly. She says she'd rather go back to the tube, which we will do if things don't turn around soon. We've been back to the IBD-AID diet for the past week, which seems to help with her symptoms, but it's hard for her to get enough calories when she's on it.

 

[Maya142]

I hope MTX works that quickly this time too! Fingers crossed that this time will be like last time.

Glad you have a plan. Really hope E starts feeling better soon.

As for the tube, my daughter says the same - she finds using the tube much easier than drinking formula!

 

[CarolinAlaska]

I hope the MTX kicks in quickly...

 

[polly13]

Very similar situation with Lucy - off methotrexate and she started to have some symptoms again and her calprotectin was elevated added back Methotrexate and while it has some effect she is not fully in remission her calprotectin came down from 1900 to about 800 so it could work.

 

[Maya142]

How's she doing now, pdx? Any better?

 

[pdx]

She's been feeling good since the day after the infusion--appetite is back, diarrhea and cramping are gone. She's still having joint pain, but we're hoping that the methotrexate will help with that. (Hopefully it will help with her psoriasis too.)

So it really seems like she's just running out of Remicade before 6 weeks. We'll know more when the levels results come back this week or next.

 

[Maya142]

So she's on 7 mg/kg every 6 weeks right now? We had to move to 4-5 week for my younger daughter. We also eventually went up to 10 mg/kg.

Methotrexate is also supposed to increase trough levels of Remicade (I think!), so that might also help.

I hope the levels give you more info - fingers crossed!

 

[pdx]

So she's on 7 mg/kg every 6 weeks right now? We had to move to 4-5 week for my younger daughter. We also eventually went up to 10 mg/kg.

Methotrexate is also supposed to increase trough levels of Remicade (I think!), so that might also help.

Officially she's on 7 mg/kg every 6 weeks, but with the way they round at the pharmacy, she's actually been getting 6.0 - 6.5 mg/kg, depending on her weight on infusion day. So yes, we still have room to increase the dose quite a bit, either by changing the frequency or the amount.

And that's interesting about mtx increasing trough levels of Remicade. We should probably check levels again in 6 months, just to make sure that we haven't overshot on the Remicade dosing once the mtx is at full strength.

 

[pdx]

We got back the levels results--2.7 for Remicade levels, and 25 for antibodies. That's the first time we've had detectable antibodies, but it's just barely into the detectable range for our lab. I talked to E's doctor this morning, and she doesn't want to raise her dose until we see how much the methotrexate helps. (She said the same thing you did, Maya--that mtx usually helps raise Remicade levels.) We talked about what ideal trough levels should be, and she said that she aims for 4-6.

She did agree that we could do the next infusion at 4 or 5 weeks rather than 6 if E starts showing symptoms, and she wants to get Remicade levels results at the next few infusions.

I think it's an OK plan, but I hate that we won't know if it's working for weeks or even months; everything takes so long with Crohn's meds...

 

[my little penguin]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4416970/

 

[my little penguin]

http://www.gastroenterologyandhepat...rking-in-inflammatory-bowel-disease-patients/

 

[my little penguin]

http://amgrcsa.webs.com/Diagnostics/promonitor/Steenholdt et al 2011 - IBD.pdf

 

[Maya142]

Hate that you have to wait. I think making the infusion earlier is definitely a good idea.

I wish she'd increase the dose now so that you don't have to wait but maybe I'm just impatient . But she could always lower it later if MTX raises her levels too high.

 

[my little penguin]

Not a big fan of wait and see if it works here
Either
Almost done with an 8 week trial of higher mtx for ds for his Sweets syndrome
So far not enough improvement if any at all
And two months wasted



Really wish they would just up her remicade then you know right away otherwise your guessing how much mtx will help
If it will help and if it will raise her remicade level enough

And she has low levels plus antibodies

Plus symptoms

We had ds raised and increased frequency all in one swoop
Due to increased symptoms
He had plenty of remicade by trough levels taken later
But eventually reacted since he body was fighting the med

 

[Maya142]

We did both at once too. Our GI used to say it's better to have a little too much Remicade than too little.

And it can't be so unsafe because now they go all the way to 20 mg/kg of Remicade for severe juvenile arthritis and other rheumatic diseases (my daughter was on that dose for a while and she did fine).

I hate that kids have to suffer while we wait .

 

[pdx]

Thanks, MLP and Maya. Those articles are helpful. I'll show all the articles to my husband, and we'll decide if we want to press for a higher dose this next time. We really trust our daughter's doctor; her treatment decisions don't ever seem to be motivated by pressure from our insurance company or inertia; she just seems to always be striving to find the ideal line between under and over treatment. Too bad it's not always obvious where that line is, though.

 

[pdx]

We talked to the doctor again today, and she agreed to try a higher dose. We'll check levels after a few infusions at the higher dose (and after mtx has had a few months to build up) and go back down if we overshoot.

Thanks again for the encouragement to push for this, and for the journal articles with data to back up the request.

 

[Mehita]

Keep us posted!

 

[pdx]

Good news and bad news this morning... The good news is that the methotrexate has really helped, and E made it the six weeks between infusions without symptoms. The bad news is that a foot of snow fell last night, and her Remicade infusion for today is canceled. Portland rarely gets more than a dusting of snow, and the whole city completely shuts down for days every 10 years when we actually get a real snowstorm. She's rescheduled for tomorrow, but we'll see if the infusion center is back open by then, or if we can actually make it there. Portland only has a few snowplows, and there are abandoned cars on all the roads (even the freeways!) which makes it hard for plowing to actually happen.

It's beautiful, though! I'm going to try to attach a picture taken from my front window. (I know this is nothing for those of you in most of the country, but this is a crazy amount of snow for us!)

 

[Maya142]

Oh no! I hope she is able to get her infusion soon! I'm glad she is feeling better - I hope she is enjoying the snow!

 

[pdx]

The infusion center was closed again yesterday, but we got in today. The power was only recently restored to the building, so it was freezing in there! All the nurses were wearing big jackets and hats and snow boots. Kind of like getting your infusion at a ski resort! Kidding aside, we were so grateful to the staff for figuring out how to make it in to work. Roads are ice-covered throughout the city, so getting to the clinic was not easy for any of them.

 

[Maya142]

How did it go pdx? I hope everything went smoothly, despite all the weather related complications.

Sounds like it was an infusion you'll remember !

 

[pdx]

Everything went surprisingly well. We took a taxi to and from the clinic, and we didn't get stuck or slide into anything, so that was a good start. And then our favorite nurses were there and E didn't even feel the IV start. So a good infusion day, and yes, one that we'll remember for a long time!

Another really interesting thing about this week is that E--to my surprise--was actually a little distressed about having to put off her infusion; she was worried that she would start flaring again. It was good to see that despite her protests about having to get the infusions, she recognizes how important they are.

 

[pdx]

We just got back Remicade levels results from last week's infusion, and E's Remicade antibodies are back to being undetectable. Looks like the methotrexate is working. Her Remicade trough level was up a little too, so the methotrexate helped in that way too.