Search results

E is currently symptomatic and Stelara levels just came back at 2.8 mcg/mL at 6 weeks post injection. (She is currently on every 8 week dosing.) A quick Google search makes me think this is low. Anyone have experience with what levels led to increased dosing? Results just came back so I haven't...

Quick question for the committee. E has been on Stelara for about 6 months, and overall doing well but still experiencing fatigue and occasional abdominal pain. She has enough symptoms that we are wondering if she'll need to switch to more frequent injections. Calprotectin post resection just...

OK--I want to do some prep before my daughter's GI appointment next week. It does look like Stelara might be a better next option, rather than Entyvio. I'm thinking that her doctor is suggesting Entyvio only because E told her that she prefers infusions to shots. So a few questions for those...

E has had high calprotectin numbers--above 500--for the past 18 months. During that time she's had mild Crohn's symptoms--fatigue, low iron levels, occasional nausea and pain, and a little bleeding. Her weight has oscillated a bit over that time but it's good right now--around 140 pounds--and...

E has been in a weird flare for the past year. Her calprotectin has been slowly rising; it actually hit 1090 in the spring and then dropped back to 650 a little later--still way too high. Her iron levels dropped in the spring too, and she was feeling fatigued. But she wasn't really having any...

As the new year begins, I just wanted to let new readers know that there are co-pay assistance programs for most biologics. If you have private insurance, the programs are independent of your income. We have good insurance for the most part, but our co-pay for infused drugs is 20%, which means...

E has her Remicade infusion next Wednesday, and I just got a call from Kaiser explaining their new procedures. The good news is that the infusion center is no longer sharing a waiting area with Urgent Care; they've moved upstairs into the day surgery area. The bad news is that patients can't...

E decided to try methotrexate injections for her last couple of doses; she wanted to see if she would feel less nauseated, and that seems to be the case for her. She still feels a little dizzy and "off" the next day, but the nausea is better with the injection. When I picked up the...

E is home from the hospital and doing really well. Her doctors weren't sure exactly what was wrong for the first couple of days, but it turned out that she had a bowel obstruction at the point of her stricture. The obstruction cleared on its own after 48 hours of IV fluids (and pain and nausea...

E's calprotectin has been sitting at 250 for a while (after being in the 400's while flaring last spring), so her doctor wants to do a scope. E really doesn't want to miss school for the scope, and the only Monday holiday in the next few months happens to be just 3 days after her Remicade...

E has been having Crohn's symptoms on and off for a few months, along with low iron, and her calprotection just came back in the 400's. We're going to get Remicade levels and iron levels at her infusion next week, and start a 3 month course of budesonide. She's also going in for an MRE in the...

As the new year approaches, I just wanted to make sure that any new readers here know about the Remicade rebate program. If you are in the US and have private insurance that covers a portion of your Remicade costs, then the makers of Remicade will pay for your out-of-pocket costs for the drug...

Does anyone know if the new, less-painful Humira formulation is now being used in the US? I haven't heard anything about it for a while. My daughter is still doing OK on Remicade, but I'm always thinking about the future...

I just got the EOB from E's first Remicade infusion this year, so I went online to remind myself how to fill out the Remistart paperwork. It looks like they are calling the program Janssen Carepath Savings now, and this year you can do everything online, including submitting the EOB and...

My daughter is not having a good PE experience this school year. I won't go into all the details, but it's bad enough that we were getting ready to ask for her to be excused from the class completely for the spring semester, which starts in 2 weeks. So then on Friday she fell while running in...

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...

E had her Remicade infusion today. They mostly go OK lately, but the tape removal at the end remains a source of meltdown. I think part of it is just that it's at the tail end of a challenging experience, but it really is painful for her too. Any suggestions for making the removal easier...

Today was Remicade infusion day, and E was finally over 50 kg (113 pounds!) for the first time. So she was due to step up from her previous dose of 300mg. The IV bag came... with 300 mg. I asked the nurse to call the pharmacist, who told me that E's doctor would have written a note in her...

E had her regular GI appt yesterday, and everything is going well right now. Her GI suggested that we check fecal calprotectin and Remicade levels this spring, and if the numbers are good, consider taking her off MTX. (She will have been on it for a year at that point.) This was at the very...

E hit 100 pounds last night, for the first time ever! She was 5'1" and 75 pounds at diagnosis a year ago and 69 pounds a month later when nothing was working for her yet. EEN got her up to 90 pounds last spring, and supplemental EN up to 95 over the summer. She called the whole family upstairs...